Life with Vulvodynia & Pudendal Neuralgia

Life with Vulvodynia & Pudendal Neuralgia: A Year In Review

2011-12-17T11:49:00.000-05:00

I have not posted in months because, nursing school has taken over my life. I don't think, say or do anything that is NOT school-related. I've been meaning to post since September when I went and saw my pelvic pain specialist.

I needed a refill of Neurontin, but when I called in to request it, his receptionist said I had to come in first. This wouldn't be an issue, but for the fact that his office has moved 45-50 minutes away from me.

When I saw my doctor, he told me that the last time I had schedule an appointment was in November of 2010. I had come to him with a suspected yeast infection, that (no surprise) turned out to be an overgrowth of lactobacillus instead.

I was amazed that I hadn't seen him in such a long time. Back in 2007, I feel like I must have seen him once a month.

This long reprieve reflects a couple factors:
1) I've learned how to be careful with my body and modify my behavior to prevent flares
2) When flares do occur, my doctor has given me enough tools to manage them on my own
3) I haven't had the time or energy to seek treatment when I felt I needed it

I have definitely managed. I had periods of severe pain, but I knew from my years of experience with my doctor and a better understanding of my body that with rest and better care, the pain would typically improve.

Admittedly, I haven't taken the best care of myself since nursing school began. I haven't bothered to use my estrogen/testosterone compound nightly, as prescribed. The consequence has been that of the scant few times I have had sex, it has been extremely painful at the onset.

I have had no sex drive since school started. For me, with less sex comes fewer pain issues. This is not necessarily a good thing. I know that my relationship has suffered because of school.

The positive thing to take away from this post is that I am managing my vulvodynia and pudendal neuralgia well enough with the tools I have.

Vacation without the O

2011-08-06T00:14:00.000-04:00

Since I started nursing school, it's been very difficult for me to keep track of the days. Now I can't keep track of the season. It does not feel like summer to me. I saw a back to school commercial and it confused me. I thought for a moment that I was in the middle of the school year already. No such luck.

I survived eight weeks of hell, taking OB and Peds with shreds of my sanity. This semester is supposed to be easier, but I'm doubtful knowing that I'm taking four classes, have two days of clinical, and I'm trying to work one 12 hour shift a week at the hospital.

The stress of school has had a detrimental impact on my sex drive. I'm so busy and so tired when my husband gets home that sex is the furthest thing from my mind. The handful of times we did have sex during this crazy semester something was missing...

That same thing was also missing when I spent some quality time with myself...

No O!

I thought once the semester ended, my orgasm would come back, but it didn't. I feel frustrated and dysfunctional. (More so than usual) I started looking at other potential contributing factors to my lack of orgasm.

The long days at the hospital were exacerbating my pudendal neuralgia so I started taking 1200 mg Q3 instead of 900 mg of Neurontin. It seemed to help, but was the higher dose quieting the orgasm nerve signals as well as the pain signals?

I don't know, but I've decided to scale back down to 900 mg and see what happens. I was even more motivated to scale back when I remembered that I was taking the highest dose possible. If my pain were to get worse, I would have no choice but to try other drugs. I'd rather have the comfort of knowing I can always go higher.

Reiki Session

2011-07-14T17:54:00.000-04:00

I got to experience something incredible at clinical one day. Two staff reiki masters were giving demonstrations for staff members; and since the staff was reluctant to try it, I got a chance to try it.

It was performed by two nurses. They asked me what drew me to nursing. I have a generic answer that doesn't pertain to my genitals, that I usually give, but because this was a healing session, I as honest with them about my vulvodynia and pudendal neuralgia.

Neither nurse had heard of either condition. Should we be surprised?

I was told to lie down on a bed. One nurse practiced the art of reiki touch, while the other used a Tibetan crystal bowl to create this unbelievably resonant sounds. The combination was so powerful, especially the tones from the bowl. The sounds rolled through my entire body; and within minutes I felt like I was floating.

When the session concluded the nurses gave me a glass of water and told me to stay well hydrated for the rest of the day. I felt incredible for the rest of the day.

I highly recommend this alternative therapy to anyone who is comfortable with touch.

If Only My Jaw Were My Biggest Problem...

2011-05-09T18:57:00.000-04:00

Last Thursday I went rollerskating with one of my friends, my sister and her fiance. My husband came too, but he didn't want to skate. I suspect he didn't want to look foolish. I used to love to skate, but I hadn't been on skates in 15 years. God that makes me sound old!

My girlfriend got it in her head that she wanted to join the local girls' roller derby. Of course my friend had never been on skates before when she made the decision, but that's beside the point... I told her I would practice with her, but derby was out of the question for me because I can't think of too many more reckless things to do for pudendal neuralgia. One fall on my butt and I could become infinitely worse.

A girl who looked like a member of the derby, with the pads and uniform. She came onto the rink, swept around behind me, then for some reason, she decided to push off on me. I was not prepared for it. It threw me right off my skates and I landed directly on my left wrist. I landed just behind my wrist guard. I felt a pop and I knew it was broken.

It started swelling immediately. I started screaming, please take my wrist guard off me. The girl who pushed me down told me she was afraid she would hurt me. (Ironic) I was rocking myself and wailing. The pain was unbelievable. I managed to rip the Velcro straps off and free my wrist. I was terrified to look at it. My husband ran out on the ring, got me out of my skates and got me on my feet. Apparently there is no protocol at the rink for what to do when a patron is injured. I was shocked about that. I wanted to get the girl's information, but I didn't ask. I was too busy crying.

As we drove to the emergency room I kept thinking, "Oh my God, I've ruined everything! How am I going to get through school?"

The nurse practitioner confirmed my worst fear: I broke my radial bone just below my wrist. He set it with a temporary cast and referred me to an orthopedist. I was given two shots of Dilaudid, which did nothing for the pain, but did calm me down.

That night I lay awake in horrible pain. The next morning I was able to get an appointment with the orthopedist. He put me in a new cast that goes above my elbow and locks my arm at a 90 degree angle. He told me I would be in a long arm cast for three weeks, then a shorter cast for the next three weeks.

I called my clinical instructor and told her about my broken arm. She told me that when she broke her elbow, she was not allowed to come into work until her cast came off. I had hoped it wouldn't be an issue, but her reaction made it clear that this was a serious issue.

I arranged to meet with my advisor at school to inquire how I should proceed. She took one look at me and said, "Shit!" Not a good sign. She told me that I would need to take an incomplete in my class and complete my clinical time in August. That was very disappointing, but the worst news was soon to come.

I may not be able to take my summer classes, effectively derailing my progress in the program. Without those classes I cannot graduate on time and those classes are only offered in the summer. In stead of graduating one year from now, I would graduate in the December, seven months later. There are only three classes I can take without completing those summer classes. I don't know what that would mean for my financial aid or my ability to remain a full time student.

I am waiting to learn the names of the instructors I need to meet with in order to determine if I will be allowed to take the classes.

I'm trying to stay positive. The good news is the spring semester is almost over...

Has It Really BeenTwo Months Since I Posted!?!?

2011-04-19T20:35:00.000-04:00

This is how insanely busy and stressful my life has been the last two months. I haven't even had time to think about my vulvodynia and pudendal neuralgia, let alone write about it.

On the whole I've been managing pretty well. I've had problems with pain during my three hour class, even with my stupid cushion. I think I need to make some new ones. I think the foam is wearing out.

I'm having some pain with intercourse, but it's tolerable. I got a new prescription for my estrogen testosterone compound and I think that's helping.

My biggest problem right now is my jaw. I'm having BIG problems. About a month ago I got a root canal. That inflamed my jaw. The proceeding filling and crown placement in the subsequent weeks made it worse. I haven't been able to open my mouth more than half an inch for the last 12 days. The last 10 days I was on a prescription anti-inflammatory and a muscle relaxant. I saw my dentist yesterday and he was about to send me to an oral surgeon, when he decided to try a different muscle relaxant. The first one didn't seem to have any effect on me. Perhaps it's all the drugs I already take...

Well this new drug has knocked me on my ass. I drove to school today, but I can tell my reaction time is delayed. I feel very tired and groggy. I think the medication is helping. I can almost open my mouth an inch. I know it doesn't sound like much, but it's a start.

It's extremely aggravating because I feel like a prisoner in my own body. I literally cannot open my mouth. There are times when it makes me feel really anxious. I want to fight the resistance and stretch my mouth as wide as I can, but my doctor told me that's the worst thing I could do. I could potentially dislocate my jaw. Scary.

I've had jaw problems since I had my tonsillectomy in 2001. I had my jaw propped open for so long, it shifted the alignment of my jaw. I had some limited range of motion and a great deal of pain and stiffness in the mornings, but I could open my mouth. It took months to get better.

I ran into this problem again when I had two of my wisdom teeth removed. I elected to only do two at a time to reduce the amount of time my mouth had to be open.

It has never been this bad though. I could always open it, there was just a great deal of pain. This situation really worries me. I'm scared.

V Day... This Was Supposed To Be A Funny Post...

2011-02-14T23:45:00.000-05:00

I've been planning this post for a while. One of my girlfriends at school was sweet enough and brave enough to read my vulvodynia blog. She enjoy the smorgasbord of names for the pink canoe and suggested I make a list for one post of all the different names I have in my repertoire. I though V Day would be perfect, but I can't be silly right now.

It's stupid Valentine's Day, my husband made me a phenomenal meal, bought me flowers and a sparkly card, but I feel nothing. No desire. No connection. No intimacy. I don't know what's wrong with me or why it seems to be getting worse.

I got my first C in nursing school today and I just don't care. That's a bad sign. I may be coming unglued.

It's Hurting More...

2011-02-11T11:43:00.000-05:00

I've been doing really well with my pudendal neuralgia symptoms, aside from my attempt at Zumba. On the other hand, unfortunately, I've been experiencing more problems with my vulvodynia.

Nursing school and living with my parents have completely killed my sex drive. From the time I turned 13, I've always been an overly sexual being. It feels very strange. I feel like a very big, important part of myself is missing. My husband has become the sexual aggressor, but he's terrible at it. It's my fault, though, I taught him that all he needed to do was tell me he was in the mood and I would jump him. Those instructions came under completely different circumstances, when he had no sex drive.

Having him say in passing that he wants sex is repulsive. I never expected to feel this way. We rarely have sex now and when we do, I have to force myself. I don't want to disappoint him and reject him all the time. I know those are not the right reasons to have sex.

That could potentially be contributing to my increase in pain. It's a new pain. There is a great deal of pain upon insertion and it takes much longer to dissipate. Where my pain was always focused on the base of the vestibule, but now the pain encircles the entire entrance.

Naturally the increase in pain does not help my nonexistent sex drive. I've thought about seeing my specialist about it, but I don't want to bother.

It's sad. I never thought I would be so indifferent to sex.

There are probably other issues I need to address in order to understand what's happened to me.

Zumba + Pudendal Neuralgia = Freaky Pain

2011-02-01T17:39:00.000-05:00

The spring semester started last Monday. My girlfriends are on what I assume is a New Year's Resolution health kick. They decided to attend a Zumba class at our gym and I hesitantly agreed to join them.

The Zumba class at school was freaky! Our instructor was flipping her hair, gyrating, and shaking her bits and pieces like a pro.

When I was in undergrad, I loved to get freaky dancing at the clubs. Sometimes if I was dancing on a bar or platform, men would hand me nasty, alcohol-soaked dollar bills. Some girls might have found that degrading, but I loved it. Despite that, even I was a little scandalized by the moves in this class. (God, when did I get so OLD! !

Even though I made a conscious effort to keep my moves low-impact my pudendal nerve started to flare. I realized that it wasn't the impact at all that was causing the pain, it was the thrusting and jiggling. I may be a small girl, but I've got A LOT of booty and I know how to shake it. I can only assume that the constant smack of my excessive booty tissue slamming against my pelvis irritated my cranky, prude pudendal nerve.

Only half way through the class I had to stop. I was the only one who couldn't keep up. I sat out one song, then decided to just do the upper body and arm parts of the workout.

I really enjoyed the class. It was liberating! I miss dancing like that. It never used to bother my nerve. I'd really love to attend another class, but I don't think my pudendal neuralgia will allow it.

Remembering Florence P. Kendall

2011-01-28T23:43:00.000-05:00

Five years ago today, my grandmother died. She fought a short and fruitless battle with lung cancer. She never smoked a day in her 95 years. She dedicated her life to advancing the profession of physical therapy. She was not ready to stop working. She had so much left to do.

It still hurts.

She was my cheerleader, my inspiration and my hero.

I miss her.

An Unfortunate Anniversary: 15 Years with an Eating Disorder

2010-12-13T21:26:00.000-05:00

I literally just stormed upstairs to my room with tears in my eyes. I've been under a tremendous amount of stress with the end of the semester and my husband just hit a nerve and it wasn't my pudendal nerve.

I've been living with an eating disorder for 15 years! ! ! I just realized that December is the month it all began when I was 13 years old. Happy anniversary to me...

I was text book anorexic during middle school and on and off in high school. I was a very restrictive eater. There were so many things I didn't allow myself to eat. I did always make exceptions for the weekends, but otherwise, I ate very little. If I ate dinner with my parents and felt guilty about it, I simply vomited. Of course that created an entirely different feeling of guilt.

In college I became very, very sick. I got to the point where I didn't even like to allow myself water because it made me feel so fat. After being hospitalized for gastritis and severe dehydration, coincidentally also in December, my therapist wanted to hospitalize me so I could get in-patient treatment for my eating disorder.

I begged her not to because I was in my final semester of college and I couldn't afford to miss school and not graduate on time. We made an agreement that I would go to the student health center once a week to be weighed and if my weight went below 100 pounds I would have to go to the hospital.

I was very sick and a big part of an eating disorder is deceit. I started stuffing my clothes with paperweights, bars of soap, drinking bottles to hide my true weight. I can't stand to be deceitful. It gnaws at me until I break down. It was especially difficult in this situation because I was lying to two women who I respected and admired. Two women who genuinely cared about me when I despised myself.

I eventually came clean with my doctor and my nurse, putting them in an extremely difficult position. They didn't know what to do with me. I should have been in a hospital, but I was so close to graduation that they agreed that keeping me from graduating would be more detrimental to my fragile health.

I continued the weekly weigh-ins, without cheating. I kept my weight around 100 pounds and I saw my therapist tree times a week.

That's how I survived college. Moving back home and having a slightly more stable and less self-destructive life helped, but I never got treatment for my eating disorder. I continued to be a ridiculously restrictive eater. I hardly had any food in my apartment. I would eat a tomato or a piece of cheese for dinner.

I didn't start eating like a "normal" person until I started to get serious with my husband. I started buying cereal, eggs, milk and cheese for him to have for breakfast. When he moved in, we're started cooking together and eating balanced dinners. I discovered that I loved to cook and I loved good food.

I started eating breakfast maybe three years ago. I've even started eating lunch. I prefer to keep it very small: a yogurt or a piece of fruit. I was a "normal" weight.

When I gained 30 pounds from the Lyrica, it was very difficult for me to handle. I had never been heavy, but there I was having to buy all new clothes and try to make peace with my new body. I was in a healthy, stable relationship. I had a good job and a good life. I couldn't completely self-destruct like I used to. I started going to the gym and making healthier dinners to lose weight.

It took two years to get the weight off the healthy way. I won't say it's easier to lose weight through starvation, but you do get results a lot faster.

The purpose of this rambling post is to say that my eating disorder has never left me. I've experienced times of health. I've even gone years without inducing vomiting. But in times of stress or sadness, it's the first place I go. I start fixating on my weight. It feels like the only thing in my life I can control.

Naturally, in nursing school, I am under a lot of stress; and honestly, I don't think it's possible to get through the first semester at my school without experiencing some periods of depression. We work so hard constantly. There's no time for pleasure to balance out the stress. We isolate ourselves from our friends and family in order to stay on top of all the material.

Tonight I awkwardly asked my mother to not bring cookies into the house or at least to hide them from me. It's very uncomfortable for me to ask something like that. I'm ashamed that I can't control myself, but it's the only way I know how to manage my eating disorder is to keep foods like that out of the house.

My mother said, "oh."

"Welcome to my Hell," my husband said.

"Fuck you."

"Stop that! Don't talk like that at my table!" my mother cried.

I launched into a tear-stained tirade on how hard I struggle every day with my eating disorder. I was especially hurt because I had told him the day before that I was having a lot of trouble lately. I excused myself and put my plate in the kitchen.

As I went up the stairs I said, "why don't you try my 13 years of Hell?" I was off by a few years, but I think I made my point.

That brings you up to the present. I've spent the last hour writing this on the night before my last final when I should be studying. I'm nothing if not consistent. My eating disorder is always the first place I go under duress and writing is my second stop. I had to write this down. I don't know if anyone had the patience to read this post, especially since it has nothing to do with vulvodynia or pudendal neuralgia, but I had to write it down.

Finally Getting Better

2010-11-23T12:05:00.000-05:00

It took the full six day treatment and a few days of rest, but I think my pink taco is free of sour cream! (Like that visual? Sometimes I even gross myself out!) My pudendal neuralgia is keeping the area inflamed, but there are no other symptoms. The pain is dissipating slowly.

Out of Commission for Two Weeks

2010-11-16T12:14:00.000-05:00

I can usually ascertain the cause of a bacterial imbalance in my lady bits, but not this time. I have no idea what caused it. I started having burning and discharge (gross) about two weeks ago. My first impulse to self-medicate. In the past that has been a problem because by the time I get to my specialist, there's no evidence of an infection and all that I have left is residual burning from my flared pudendal nerve. On those occasions, I got a very stern scolding from my doctor.

This time I decided to be a good girl and schedule an appointment and do nothing to teat my symptoms. Unfortunately, I couldn't get an appointment until Thursday, a full week after the symptoms began. Ugh!

It was a miserable week, but I thought it would be worthwhile when my doctor said, "yes, this time you really do have a yeast infection." Not this time!

After looking at my cells under the microscope my doctor's PA found that I did not have any signs of yeast! So frustrating! The good news is, even if I had self-medicated it wouldn't have helped. The bad news is, I don't know what caused it and the treatment is messy.

I hate using overnight vaginal creams because the whole next day that cream gets all over my squish! Yuck! Obviously, I have to wear underwear on those days, which causes more pain to my poor sloppy moose knuckle!

Hopefully, this clears up soon. It's making me feel gross.

I Haven't Forgotten

2010-10-16T10:49:00.000-04:00

Midterms have begun. I have three weeks of Hell in front of me. Nursing school is unbelievably demanding! I still haven't figured out the best way to stay on top of all the material. I'm putting all my energy into my most difficult class, but unfortunately they are all difficult. The class I've neglected the most just snuck up behind me and bit me in the ass. That midterm was ridiculous!

I've been managing my vulvodynia and pudendal neuralgia pretty well. On some days, I even bring my cushion to class. On the sex front, I've discovered that I really do have less pain with non-latex condoms! Who would have thought?!?! Perhaps they reduce the amount of friction. I do have to use more lube; and if we change positions, I have to reapply. It's easy. Instead of wiping my hand off before we get down to business, I just keep it coated, so the KY is there if I need it without having to interrupt the flow.

It's funny, I always thought condoms were the antithesis of intimacy, but they've brought an exciting new element to our activities... Let's just say we're both enjoying ourselves... And every time I go to the bathroom after sex, like a good little girl, I'm shocked by the lack of post-coital burning.

All that fun stuff aside, I know that my posts have grown more infrequent and for that I apologize. Nursing school has swallowed me whole. I'm going to try to be more active on this blog. I just wanted to let you know that I'm still living every day with vulvodynia and pudendal neuralgia. I'm working hard and I'm living a normal (if you call living in a two bedroom condo with your parents, your husband, two dogs and a cat, while your own house sits empty on the market normal) life. I have an active sexual relationship with my partner and my daily pain level is manageable.

It is possible to enjoy life with vulvodynia and pudendal neuralgia.

Don't lose hope.

Sorry It's Been A While

2010-08-10T22:55:00.000-04:00

I just realized it's been nearly a month since my last post! I'm sorry I haven't been more active. My life continues to be crazy. I'm two days into my final week at my job. Scary. Goodbye paychecks, hello debt!

I spent last week at the beach with my husband's family. It was a nice vacation. The best part was the fact that I got to rest my pudendal nerve. My flare is finally over. I'm still being very careful. I spent the six hour car ride to and from the beach lying across the backseat, just like the doctor ordered. I felt stupid and high maintenance, but it was a necessary precaution. Fortunately for me, my husband prefers to drive, so he wasn't put out by the arrangement.

I have so many loose ends to tie up at work, which is forcing me to sit at my desk instead of stand. It only takes a few hours for the pain to build up, even sitting on the cushion. I wanted to go to the gym tonight, but my pudendal neuralgia had other plans.

I'm so busy right now, I don't even have time to freak out about going to school. Wait and see how I'm doing this weekend...

The Block Wore Off

2010-07-18T23:14:00.000-04:00

I am still so impressed by the success of my pudendal nerve block. It really helped and seemed to reduce the pain. But all good things must come to an end. I had the block last Friday and by Monday it started to come back.

I worked from home as much as I could. As the week went on the pain got worse. It wasn't as bad as it was before the block, but it was bad. I was getting the shot of pain with every step I took. I called my doctor to see what I could do. The answer was disheartening. Nothing.

I can't get another block for three to four weeks. All I can do is go up on my Neurontin, take pain meds as needed and rest. I shed a few tears after I hung up the phone. I felt helpless. There's nothing proactive that I can do.

Successful Pudendal Nerve Block

2010-07-15T11:14:00.000-04:00

I thought the heat and the bathing suites were going to do me in, but in the end it was the actual trip that caused me pain. It took us more than four hours to get to and from the beach. Even though I was sitting on my cushion, my pudendal nerve flared.

I started to feel pain in the second hour in the car. I tried to shift around and find a comfortable position without much luck. I had intermittent pudendal nerve pain during the holiday weekend, but I wasn't too worried.

After I returned to work, I realized I was in a flare. Every day it got worse. The pain was constant. There was no position I could get into the brought me relief. By Thursday, every step I took caused a shock of pain. I've never had that before. The pain was concentrated around the opening of my urethra. The area was burning.

After a trip the gym on Thursday, I knew I was in trouble. The pain got so much worse after I did a series of sit ups.

The next day I saw my doctor who suggested a nerve block. He said it could really help with an acute flare. He performed an extremely painful vaginal nerve block. I couldn't help but cry as he located the nerve canal and performed the injections.

Within a few hours, the tears were worth it, because the area was completely numb. I wasn't in pain. I continued to walk gingerly for the next few days, but the nerve block really seemed to knock out the flare.

Warm Weather Blues

2010-07-02T17:59:00.000-04:00

I'm enjoying the 4th of July weekend at the beach, but summer weather presents a lot of problems for someone living with vulvodynia and pudendal neuralgia. There are even more accommodations to make to stay comfortable.

I typically can't wear panties. The pressure of even flimsy cotton panties again my clit causes a great deal of irritation. If I have to wear panties, I can only wear them for a limited period of time. In the summer, the desire to wear panties increases a great deal because of sweating. I know, totally gross, but I want to be honest here. Naturally if it's hot and humid, areas of your body that overlap are going to perspire. This makes panties really appealing.

On a really hot day I'll wear panties and powder my thighs. I usually can't go a few hours without having to take them off. Other days if my love button is especially cranky, I'll just powder my thighs and hope for the best. I keep a pair of panties in a sunglasses case in my purse just in case I can't stand it.

The other day my bean was raw and angry. I went to the freezer for some ice and discovered a small blue ice pack that was just the right size. It felt good to have the extreme cold on my angry folds.

Take all these issues and put them on the beach and what do you get? A problem. If you want to wear a bathing suite, you're just asking for trouble. I just spent the afternoon on the beach and my kitty is not happy with me. I try to create a little space between the bathing suite fabric and my lady bits. It helps a little bit.

Despite the discomfort, I'd rather have a weekend on the beach with an angry kitty.

I'm Not Good With Change

2010-05-14T11:47:00.000-04:00

The closer I get to nursing school, the more fear and doubt I have. I'm scared that I won't make it through school. I'm scared that I'll have anxiety attacks at the sight of blood. I'm scared of completely changing careers. Once I start this program, there's no turning back.

Over the past week, I've received a few emails from readers here that reminded me why I've come this far. There are so many women who need help and I want to be able to help in a professional capacity. The only way that's going to happen is if I get through nursing school and get two more degrees under my belt.

All Quiet on the Vagina Front

2010-04-30T14:59:00.000-04:00

My vulvodynia and pudendal neuralgia have been under control the last couple weeks. I've been able to get through an entire day at work without pain! I think it's because I'm splitting my time between sitting on my cushion and standing.

I still have pain when I do strenuous work or go to the gym. Last weekend, my husband used his favorite wedding gift, a chain saw, on some branches that have been cluttering our yard for a year. I carried the smaller logs and put them in a pile in the corner of the yard. I also scavenged the yard for sticks, creating a separate pile for them. The repetitive motion of bending and lifting caused my pudendal nerve to flare. I had to stop that activity and I haven't gone back.

When my body starts talking, I drop what I'm doing and listen. It's just not worth it to push myself to do that extra five minutes on the elliptical or pick up that last log in the yard. The price is just too high. I've found a good routine that allows me to live a pretty normal life and avoid causing myself pain as much as possible. There's always some pain with sex, but it's manageable. With the compound back in my system, there is less burning pain after sex.

I'm content with my holding pattern. We'll see how long it lasts.

Crowded

2010-04-20T16:17:00.000-04:00

Well the idea of living with my parents while we try to sell our house and while I'm in school seemed like a good idea when they were on vacation, but they've been back for a week now and I have one major problem: SEX!

We can't have sex! Our bedrooms share a wall and I have a feeling my husband isn't cool enough to creep down to the living room late at night for a little fun. He's a prude. To make matters worse, they're retired, so at least one of them is home all the time.

Honestly, it's only a minor complaint. We can always have rendezvouses at our house. We'll see.

Group Therapy Update: Seeing Some Improvement

2010-04-16T16:33:00.000-04:00

I haven't mentioned Group in a while and that's simply because I have no complaints. I'm really enjoying it (if that's the right word) and finding it surprisingly helpful. There's one woman who is very similar to me, almost to the point of being eerie. Seeing some of my behaviors in another person makes me want to vigorously work on myself. I'm finally seeing the qualities in myself that others have described for so many years.

Since I was six years old, I've been described as very serious, very rigid, intense. I just didn't see it. I don't think of myself as serious or intense, but watching her, I can easily see how others could perceive me that way. I'm trying to be more fun and confident in myself. I'm pushing myself out of my limited comfort zone.

Last weekend, I reconnected with some old friends. I hadn't seen them in years, and in one case, the friendship had ended poorly. I didn't want to go. I almost backed out of several occasions. Why? I don't really have a good answer. I felt terribly shy and self-conscious. I was afraid it would be awkward between me and my estranged friend.

I wanted to bring my husband as a crutch. We was invited. If he went, I wouldn't be afraid to go.

I realized that this was something I needed to do on my own. They were my friends from a time long before my husband and I wanted to challenge myself, overcome a very silly fear.

I went alone and I had the BEST time! I really let my hair down. I cleared the air between my estranged friend and I and I'm really hoping to see a lot more of him in the future. I had a few drinks and stayed out until 3:30 am! It was great! I got to be myself and really laugh.

I work so hard at my job, at school, on my house that I completely forget to have fun every now and then. I carried my hangover with pride the next day as I repainted my basement floor. Life is good.

Visiting a Nursing School

2010-04-14T11:56:00.000-04:00

I found out last Thursday I've been accepted to both schools to which I applied! I now have a difficult choice to make. I'm so excited to have a choice.

I'm visiting one school today to take a tour of their facilities and get more details about their program. This particular school offers a Master's of Science in Nursing for second degree applicants who satisfy the prerequisites. The focus is a little different than a basic BS in Nursing and I want to know how it compares.

I need to make an informed decision. In the BS program at the other school, I would be a big fish in a small pond. I think I could do very well. In the MS program I would be plankton floating in a vast ocean.

More importantly, the BS programs offers a great deal of prep for the NCLEX exam. You can't be a nurse without successfully passing this exam. I want to know how much the other school focuses on this exam.

Although these factors are influential, unfortunately, the most important factor is money. I am still waiting to receive my financial aid packages from both schools. Regardless of which school is best, I have to choose the school that offers me the best deal. I still have another degree to go before I can become a Women's Health Nurse Practitioner. I can't rack up all my debt with this one degree and I don't want to be forced to take out private loans.

My life is is still very much in limbo. It will be a few more weeks before I receive my financial aid; until then I won't know where I'm going.

Home From Hawaii

2010-04-12T16:22:00.000-04:00

I'm back at home and back to work. I had an incredible time, although I missed my husband quite a bit.

I brought my cushion on the plane with me and survived 14 hours of travel each way without pain. That thing is a lifesaver! I only had one day of pain, following a five mile hike to a waterfall. Had I know the hike was so long, I doubt I would have done it.

But three years ago when I was in Hawaii, I attempted the same hike and failed. I was on Lyrica and Ambien at the time. I had trouble functioning and I was putting on weight. I got overheated and had to stop.

This year I made it without even getting tired. It was a great accomplishment and worth the pain that followed.

More Traveling with Vulvodynia & PN

2010-03-29T23:45:00.000-04:00

I haven't written lately because I've been doing pretty well. I'm dividing my work day between standing and sitting on my cushion. I've gone longer in the day without pain.

I just travelled for 13+ hours to visit family in Hawaii. I brought my cushion along and it help make the eight hour flight tolerable. Best of all, I didn't leave the cushion in a cab once I got here (happened on my honeymoon.) Also, unlike my honeymoon, I'm traveling without my husband. My parents are here, my aunt, uncle and a host of cousins, are here as well, but I am just heartsick.

The time will go by quickly and I would have been a fool to pass on this opportunity.

Running From Stress

2010-03-10T16:28:00.000-05:00

I'm under a great deal of stress right now. I'm trying to get my house ready to put on the market, I'm waiting to hear from the colleges I applied to and I'm trying to figure out how I can afford to live. I'm also terrified of making such a drastic career change. Plus there are some family issues that I cannot discuss.

It's not just the stress, I've also been depressed (hence the lack of posts lately). I'm still somewhat overwhelmed by the idea of marriage. Then two weeks ago a very dear friend of ours and half of our favorite couple came to us and said his marriage is dissolving. They've only been married for eight months! ! ! But they've been together for eight years! How could this happen?

This news shook me to the core. They were my gold standard, my ideal. I thought, if they can't do it, what hope do we have? Of course, I shouldn't compare our marriages, but I saw some parallels that wrecked me.

Amidst all the chaos, I've wanted to disappear. I wanted to run from all the problems that are smothering me. Of course, I have no money thanks to the wedding and I'm desperately trying to save for school. Traveling didn't seem like an option, until I looked at my credit card points. I have enough points to fly to Hawaii for free! My parents are there visiting family there and I've been invited to join them.

Initially I was so excited about this trip. It was something I was going to do on my own. I could rediscover my independence and get away from all my worries. But the guilt set in quickly. By the time I got home the night I booked the tickets I was a blubbering mess. I felt awful about going on a vacation without my husband. I begged him to come with me, but he said it didn't make sense. Who would watch the animals? Who would take care of both houses?

He was right, but I thought we could work it out. He insisted that I go alone and enjoy the time with my parents. I've wavered on whether or not to go, but I would be a fool to miss this opportunity. We won't be able to afford a vacation for at least the next two years and this is probably the last time I'll be able to travel with just my parents.

I'm not looking forward to 15 hours of travel alone. Flying causes me a great deal of anxiety. No one will be there to hold my hand when I get nervous. I know the nights will make me sad; and I hate the idea of being SO far away. But I know somewhere in my right mind that this will be good for both of us. It will be nice to miss each other. Seeing him at the airport when I get home will be amazing!

When Is the Right Time to Tell Him It Hurt

2010-02-22T23:17:00.000-05:00

I've been back on my estrogen/testosterone compound for a while now and when I get horny, look out! A few weeks ago, in a fit of passion I encouraged my partner to do something that on any other day I keep off limits: I slid his finger inside me. What he did from there was mind-blowing. I've only let one or two other people do that to me and I've NEVER enjoyed it at all.

In three and a half years together, this is the first time he's done that. It felt incredible. It didn't bring me to climax, but it just felt so damn good. With my extreme desire and his new found confidence in the sack, we've been having some steamy evenings.

Last Thursday night, we had what I would consider the greatest sexual encounter of our relationship. Nothing comes close. It was amazing. There are no other words.

Tonight was great, except for one thing... I didn't tell him no or gentle or ouch or be careful of that. First of all, I wasn't in the mood for foreplay. I just wanted sex. My partner wanted to touch me. I thought about saying something, but I didn't. He was running his finger back and forth from the top of my clit to the end of my snatch. He kept rubbing the opening of my urethra. I thought, "I'm going to feel that tomorrow," but I didn't say anything. My partner rubbed my clit vigorously and it hurt a bit, but I just didn't want to say anything.

Now, three hours later my clit is still swollen and irritated and my urethral meatus feels uncomfortable. All of this could have been avoided if I had just told him something to deter him. But he's been so confident and I know how fragile that confidence is. I didn't want to risk him pulling back and shutting down. I'm now wondering if I should let him know to be careful with certain areas or just let it go.

The question is: when is the right time to tell him it hurts, if the pain isn't that bad? In the moment? Right after? Days later? Never?

I don't know if there's a correct answer. I'm eager to hear what you think. What the best way to tell him or her?

Shovelling Upset My Kitty

2010-02-11T12:17:00.000-05:00

Today I had to dig out my car and my driveway once again. This is really getting old!

Apparently snow shoveling puts pressure on the pudendal nerve. I noticed as I lifted a shovel load of heavy snow there was a twinge of pain in the opening of my urethra. I tried to shovel a few more times, but pain persisted. I decided to quit and rest my nerve to avoid a flare.

I hate feeling disabled but I'm happy to put the shovel down. There are a few "benefits," if you will to vulvodynia and pudendal neuralgia. For instance, my cousin in-law was in labor for the last 30 hours. That's something I won't have to endure.

How Many Inches...

2010-02-10T20:27:00.000-05:00

We just got walloped with another 20 inches of snow! ! ! I'm going to miss an entire week of work at this rate. The good news is we haven't lost power. We're just stuck. I hate being trapped in any capacity literally and figuratively. I can't get much more trapped!

Yesterday we walked through the neighborhood to the nearest convenience store because I needed a machine cappuccino. I was reading for school and it was putting me to sleep. While we were there I bought my first ever Playgirl. What else am I going to do while I'm stuck here?

I have a fascination with penis. If I had it my way, I would see a lot more penis than I do. Wow! Playgirl is just full of penis! I had no idea. I didn't know they showed everything. I just figured like every other double standard in Hollywood, we would just see a suggestive glimpse of penis here and there. But no, I opened the first page and there was penis everywhere.

I haven't spent a lot of time looking at Playgirl, but you know the typical girl that winds up in there satisfies the American standard of "beauty" and most of them have nice round fake boobs. The same standards are not applied to Playgirl. Perhaps nice penis is hard to come by (oh lord, pun intended).

A lot of the cocks in this issue are of average length and many are just plain ugly! ! ! Don't even get me started on the balls! Some guys looked downright deformed. Oh well, at least I got a heaping serving of cock. That should satisfy me for a while.

Blizzard Good For Vulvodynia But Bad For Pudendal Neuralgia

2010-02-06T21:16:00.001-05:00

We have over two feet of snow on the ground here. Digging out has been a nightmare. My husband took care of the sidewalk while I tackled my car. The furious winds created snowdrifts all over the neighborhood and a nice big one right against my car.

After clearing away as much as I could from the top and right side, I decided to try to clear away the mountain of snow on the left side. As I trudged around the car I quickly found myself up to my lady bits in snow. Frankly it was kind of nice. I thought maybe every lady out there with vulvodynia should take a few minutes to have a seat in the snow. A couple steps further and suddenly the snow was over my boobs. I was completely buried. Because my car is only about a foot and a half away from my neighbor's fence clearing away that side was futile, but I still had fun.

In the backyard we started playing in the snow. I dove backwards off the porch into the snow. It was like landing in a memory foam bed. If it weren't so damn cold I could have stayed there for hours. Not the smartest thing to do with pudendal neuralgia, but I was fairly confident that I would have a soft landing.

I normally hate snow. I had a sledding accident when I was 16 that may have actually caused my pudendal neuralgia. My parents lived on a big hill so winter weather was always a blast. One afternoon I took my standard poodle out with me to keep me company while I went sledding [technically an only child : ( ]. I climbed to the top of the hill for my first ride. I took off at a good speed. My dog ran playfully beside me. Suddenly I hit something hard, was thrown up in the air and landed on my back with the sled on top of me.

The impact knocked the wind out of me. I hit my tailbone so hard that I thought I was paralyzed. As I regained my breath I remember telling myself, "ok try to move your toes." I did so I knew I was ok. I was in so much pain I couldn't get up for a few minutes. My dog sat anxiously by my side.

When I finally got to my feet I realized what had happened. I hit a tree stump hidden under the snow. I dragged my sled back to the house and vowed to never sled again. I still haven't. From that point on, I've hated snow.

I didn't show symptoms of pudendal neuralgia for a few years, but that's the only injury I sustained to that area. I'll probably never know definitively what caused my PN, but at least I've made peace with the snow.

NVA Support Contact

2010-01-25T16:21:00.000-05:00

I have just been selected to be the National Vulvodynia Association's Support Contact for my state. Just like on this blog, I will not offer medical advice, I will only share my experience. I'm honored and excited to become a volunteer for the NVA.

It Should Have Been A Good Day

2010-01-20T16:21:00.000-05:00

Yesterday was a roller coaster. In the afternoon I received a call from the Nursing Adviser from one of my prospective schools. She said, "I have your application here and it looks beautiful. I just wanted to let you know to expect an acceptance letter very soon." I was thrilled and so relieved. I called my husband and my mom to tell them the good news.

It so happened that I was attending an information session that evening at the school. I had felt pretty nervous about going, but after that phone call I felt like I belonged there. The school is in a beautiful area, surrounded by pastures and woods. I love it there.

The session began with the history of the school and some of it's major achievements. When the Nursing Adviser took the floor my mood started to change. As she described the curriculum, the reality of this decision shot straight into my heart. I started to feel panicky. I entered the "What the fuck am I doing?" stage. There was a person with a nasty phlegmy cough sitting across from me. It grossed me out. I don't like to be around people with colds because I don't want to catch what they have. How could I possibly become a nurse if I'm repulsed by coughing and snorting?

In reality, that's only one small area of nursing. There are so many other options where you're not dealing with the cold or flu. The obvious example is right where I want to be: women's health. But in that moment, I started to backpedal. Am I really going to be able to do this? What if I don't like it? What will I do then?

All these worries were swirling long before the topic of scholarships was breached. After the presentation concluded, we were able to ask questions. I asked if the school offered merit scholarships for second degree students and her answer was no. I began to feel sick to my stomach. I was counting on a scholarship.

I have no money to pay for school. I would have to get loans to cover everything, of course, the maximum loan amount approved by the school only covers half of what I need in living expenses. I don't know what I'll do to cover the rest. With this plan, I would have a mountain of debt by the time I finish with my BS. Even then, I'm only half way there. I need a Master's to be a nurse practitioner. Another two years of school would double the size of my mountain of debt. We're talking six figures.

I went home feeling crushed and frightened. I didn't know what to do. My dreams were literally within my grasp and now they seem unattainable. How could I come this far and give up now? How could I handle all that debt? I began to think I would never become an NP.

Naturally, I looked to my husband for support. That was a mistake. Initially he was sweet and loving, but as I began to explain my situation he completely shut down as he's been know to do. He wouldn't talk to me, he wouldn't answer my questions, he wouldn't communicate at all.

I needed him last night and he completely let me down. To make matters worse, he decided to sleep in the guest bedroom. I asked him why and he said it's better that I'm not around him. I felt like I was being punished. I have no idea what's going on in his head. I have no idea why he shut down. And not for lack of trying.

I curled up in our bed alone and cried. It should have been a good day.

It's Out Of My Hands

2010-01-15T15:59:00.000-05:00

My applications are in for nursing school. I can't fuss over them anymore, they are as good as they're going to be.

Back in 2007 when I began my quest to save vaginas from vulvodynia and pudendal neuralgia, I never thought I would get to this point. Three and a half years is a long time, especially when you're only taking one class per semester. I felt like I was moving at a glacial pace, it was incredibly frustrating.

Now I'm standing on the edge of a ravine without knowing how I will proceed. Will I fall off the edge to land broken at the bottom or will a bridge appear to safely deliver me to the other side? It's frightening to think about and I try not to as much as possible. Completing the applications helps push the worries out of my mind. I'm keeping myself pretty numb to the whole thing.

Now all I can do is wait. I think both schools have rolling admission so hopefully I won't be waiting too long...

Success with the Compound and So Much More...

2010-01-13T15:54:00.000-05:00

I decided that after nearly three years it was time for this blog to get a makeover. I found a template that's even girlier and vaginaier(?) I like it!

On to the compound... I've been using it for two weeks and I decided that I like the sample-sized compound better. The other one gets grainy as you rub it in, like rubbing sand into your squish. Why would anyone want to do that?

I know it can take a few months to see results, but I think my vulvodynia is improving. I'm having less pain during and after sex already. The best part is the trace amount of testosterone is making me horny. I love it! I feel like my old self again. I'm sure being on the right psych meds helps too.

The Sampler

2010-01-06T14:45:00.005-05:00

I saw my pelvic pain specialist last week about the resurgence of my vulvodynia and I told him that the base of the estrogen/testosterone was causing my skin a great deal of irritation. I asked if the compound could be water-based. He explained that because the hormones are lipid-(fat)based they are unable to bond to a water base. Think oil and vinegar.

He then went into his drawer and pulled out all sorts of bottles and tubes. With a tissue handy, he placed a drop of two different bases, one on each hand for comparison. I rubbed my thumb and index fingers together to get a feel for each base. I didn't want something thick and goopy like Vaseline.

I was torn between two bases: one was very smooth and light, while the other was a bit thicker. I was concerned that the lighter base wouldn't be as effective. My doctor arranged to have the compound I liked best as a full prescription and he also ordered a sample of the thicker compound. He said, "try both and decide what works best for you."

I just had no idea any of this was possible. I didn't think we could use so many different products. My doctor looked like the Avon lady.
He did scold me for stopping the compound without seeing him first. I could have avoided all of this pain. The compound builds up your skin over time because the hormones actually enter the skin cells. Those skin cells multiply and the skin in the affected area improves.

After stopping the compound, it takes a few months for the stronger cells to be shed. That explains why I was fine for three months without it.

The kicker is, while it takes a few months to wear off, it also takes a few month to start working. I'm starting from zero.

Lesson for the Day: Always consult your doctor before changing or stopping a medication.

Christmas CAME Early, Then I Got A Lump Of Coal

2009-12-29T11:15:00.003-05:00

My husband and I spent the holiday with his family out of town. The day before we left, we got down to business, knowing it wasn't happening while we were under his parents' roof. I hadn't had an orgasm probably since the beginning of the honeymoon in mid-October. Let me clarify, I haven't had an orgasm with him since then.

There are a lot of factors that influenced my dry spell: for one thing I was depressed, so sex wasn't happening very often and also performances were less than stellar... But that day, I was at the helm. I didn't think it would happen, but it snuck up on me and boy did it feel good! A clitoral orgasm cannot compare to a vaginal orgasm in my book.

That leg-shaking, toe-curling experience drastically reduced my stress level while we were away.

However, just like the last time we knocked boots, I had a great deal of pain at the opening of my pink orchid that continued long after the sex was over and the lidocaine had been applied. Obviously, my vulvodynia is back with a vengeance.

To repair the damage I began regularly applying the estrogen/testosterone compound, and quickly found out why I had stopped it in the first place (I should really read my own blog!). It irritates the skin in the surrounding area, especially my clit.

The compound is Vaseline-based, so it's hard to wash off. The longer it lingers, the more my skin flares. I'm hoping my doctor can prescribe something that is water-based.

The pain from the sex trauma and the compound trauma has dissipated, but don't worry I fixed that by going to the gym and spending too much time on the elliptical machine. I caused a pudendal nerve flare that is concentrated on the opening of my urethra (sorry I don't have a fun way to describe that).

How the Hell am I supposed to lose the wedding weight, the honeymoon weight and the holiday weight? This blows.

Also, all the cheating I've done at work crouching on a desk chair when I should be standing has messed up my tail bone. Now it hurts to sit for a whole new reason! But to make it even better, it also hurts to bend over and lie flat on my back! Awesome!

This is what cheating gets you ladies: a whole new set of problems.

Please forgive me for the paragraphs of bitching. I just had to get it all out. Despite all this crap, I'm managing pretty well. I'm actually amused by how messed up things are right now. Perhaps that humor came through.

When You Slack On Your Meds You Pay The Price

2009-12-21T14:54:00.003-05:00

With my altered emotional state, sex has not been a top priority, but thankfully I'm feeling more like myself now.

Last night, I decided to get it on, but I almost had to tell my husband to get it off. I felt so much pain at the moment of penetration, I involuntarily pushed him. For a fleeting second, I thought I have to stop, but like always I soldiered on. I don't want to give my husband a complex. He worries too much about everything as it is.

The pain is concentrated around the opening of my squish, and trust me it's still burning bright right now. I believe this is primarily a vulvodynia issue based on the location of the discomfort. I have to confess that I haven't used my estrogen testosterone compound in months. Perhaps all that resilience has worn off.

Tonight it's back to the compound and maybe I'll get intimate with an icepack for a while. I am really uncomfortable. I hope I haven't really set myself back.

Wellbutrin Well-being

2009-12-16T11:15:00.002-05:00

I've been on Wellbutrin for five days and I've really improved. I feel present and I have more energy. I don't know whether it's the drug or if I finally pulled through my rough patch. Hard to say. Perhaps it's both.

The only thing I do know is that I'm now on THREE psych meds! ! ! That's ridiculous! What does that say about me? I asked my Dad that question and he said it made me lucky because 20 years ago there were only one or two drugs and otherwise you were on your own. Because of advances in modern medicine, there are many different medications available to treat mental illness.

I'm left wondering what kind of long-term effect these medications will have on my brain. Will my brain ever be able to produce the necessary chemical to maintain my mental health without drugs? Is prolonged drug use going to retard my brains ability to manage itself? Do these drugs set you up to be a user for life?

Think about it, the longer you're on a psych med, the more the doctors and pharmaceutical companies profit.

What am I going to do when I want to get pregnant? I don't think I can function without drugs and I don't think I can function pregnant. That's going to be a problem. Fortunately, I don't have to worry about that for a few years.

I tried to go off of one of my meds over the summer, but my mind went to very dark places once I did. Maybe I'm just one of those people who has to be on psych meds for the rest of my life. It's a disappointing thought.

New Medication For Depression

2009-12-11T15:35:00.004-05:00

I've been battling depression since the beginning of November. I really thought it was situational. It normally is. I'm in a lull because the wedding and classes are over, but as soon as school starts in February I should be fine. Following that logic, it would seem that if I took myself out of my current situation, I would feel better.

I got to test that theory and it proved wrong. My friend's father passed away last Sunday. My husband (wow, still getting used to that) and I drove up the New Jersey for the viewing and the funeral. Now, a funeral isn't a happy occasion, but being off of work and traveling should have snapped me out of it. Instead, I was completely disengaged and down.

I feel like there are weights at the corners of my eyes and mouth, pulling the skin down. You can actually see it on my face. I always feel tired and in a haze.

I saw my therapist this week, but I found the appointment repetitive and pointless. Her theory that I'm craving chaos in my life and that's why I want to self-destruct seems inaccurate. Frankly, my life is in chaos. My basement has been flooding periodically since we got back from the honeymoon.

When the plumbing backs up we move out, the plumbers come, think they've fixed it, we move back in, the basement floods again, we move back out. I've been living out of suitcases for weeks. Finally we learned last week that we had to replace the main sewer line. There goes all the money we got for the wedding.

If that's not chaos, I don't know what is! ! !

And still I'm down... I saw my psychiatrist today to follow up on the higher dose of my mood stabilizer. I told him it left me too sedated, so he decided to add Wellbutrin to my daily regimen. He told me it would give me more energy, and there would be no weight gain or sexual side effects. Sign me up!

I start Wellbutrin tomorrow. I hope it brings me back. I don't want to feel this way any more.

Neurontin, Same Drug, Different Pill

2009-12-07T12:55:00.002-05:00

My doctor wrote my prescription for Neurontin differently this time around. I usually take three 300 mg capsules three times a day, but my doctor wrote the new script for 1.5 600 mg tablets three times a day. I objected to the change, but my doctor insisted that he preferred to prescribe it that way for patients with vulvodynia and pudendal neuralgia.

I've been taking the medication this way for a month and a half and I've seen a reduction in my daily pain. At first, I thought I was still in a honeymoon period with my pudendal nerve. Three weeks of vacation left me with very little pain. I thought maybe I the pain would build up as I returned to work, but it hasn't.

I can't say definitively that the change in pills has made a difference, but I can't think of another reason for the improvement. It's a nice reprieve.

Back into the Lion's Den

2009-12-07T12:45:00.002-05:00

I went back to group therapy on Saturday; and it was better. There were times when I wanted to speak, but I didn't feel comfortable interjecting. Eventually, I gave up trying and withdrew from the situation.

That's been one of my biggest problems lately. I completely withdraw to the point where I feel like I'm watching my life, but not actually a part of it. That may not make sense to you. Don't worry, that just means you're not crazy.

I was forced to speak a few times; and it wasn't as difficult as last week.

Once again, I felt completely exhausted afterward, but that was due in large part to a higher dose of my mood stabilizer. I curled up in a ball and passed out on the couch for two hours. I was a zombie for the rest of the day.

That was the only day I took the higher dose. I was far too sedated to function. This only confirms my doctor's belief that there isn't a pill to fix me. It's something I have to work on.

Group Therapy

2009-12-01T12:10:00.002-05:00

I debated whether or not to share my group therapy experience, but since therapy is often a vital to a life with vulvodynia or pudendal neuralgia, I figured what the heck!

I've been stuck in a rough patch for a few weeks, worsening as time goes on. I saw my therapist two weeks ago and she told me that group therapy could really help me. She's suggested this before, but this time she was adamant. I need all the help I can get right now, so I agreed.

My therapist told me it was a handpicked group 8 of very smart, successful women.

I was terrified to go and I dragged my feet in the morning. I arrived 15 minutes late and the session was already in full swing. One woman was in complete crisis because she had just lost custody of her children. She was beside herself and no one could calm her down. She went on and on for the better part of an hour in tears. No one else felt like they could speak because she negated everything.

Finally, my therapist interjected and asked a woman who had been angrily rocking what was upsetting her. She said, "I had to put my cat to sleep yesterday and no offense to you Quinn, but it really pisses me off that you (the therapist) brought someone else into the group without asking our permission first!"

I was in shock. I felt tears well up in my eyes, but I blinked them away. Intellectually, I know she wasn't mad at me, but emotionally it still hurt. I didn't want to be there and it was VERY clear that I wasn't wanted there.

I was forced to explain a little bit about myself to the group with a lot of prompting from my therapist. I said, "I feel like it's insulting to talk about my problems considering what they're going through."

When the session was over a few women asked if I was coming back. I didn't want to, but I promised my therapist I would try it for at least six weeks.

I collapsed when I got home. I felt completely violated by the entire experience. I had to expose my problems to a group of somewhat hostile strangers and I felt wrecked. To make matters worse, I was horrified that my therapist thought it was appropriate to group me with women who were in so mentally unstable. I'm not THAT crazy.

OT: It's Never Just One Thing...

2009-11-24T13:37:00.002-05:00

I don't have anything new to report on the vulvodynia or pudendal neuralgia front. Same old, same old.

I am dealing with another problem that is unrelated. It may be difficult for others to understand. I grew up in a chaotic household. My parents had a lot of problems and as I reached adolescence, so did I. I have the propensity to be incredibly self-destructive in all aspects of my life; from the people I associate with, to the actions I take.

I hit rock bottom more than four years ago, and at that point I began to turn my life around. I learned to value my life and myself. I distanced myself from my associates and I got a handle on all of my destructive behaviors.

It was during this time that I met my husband and went back to school. My life has been busy, but not chaotic. Unfortunately, whenever I hit a lull when I'm not busy, I start to come apart at the seams.

I'm in a massive lull right now. The wedding is over and my next semester doesn't begin until February. Most people would enjoy the downtime, but not me. There are dark corners of my mind that begin to take over. I feel dissociated, like I'm watching my life happen, but I'm not really there. I'm fighting the urge to self-destruct.

I'm so disappointed with myself. I thought I was over all of these problems. I finally have a good, stable life and I don't know how to handle it. I don't know how to live without chaos.

I'm getting help, but unfortunately this isn't a problem you can just fix with a pill. My therapist told me that I'm very complex. Great, that's the same thing my pelvic pain specialist said about my cooter! I'm just complex all and therefore nothing is easy.

A SIDE NOTE: I find it amusing that I can openly describe every nook and cranny of my lady bits, but when it comes to emotional issues, I'm extremely vague. I guess even I have limits.

Back at Work & Back in Pants

2009-11-06T11:27:00.005-05:00

I love the fall. It's my favorite time of year. The cool air and the gray skies make me really happy. It reminds me of when I truly fell in love with my husband. The only problem with the fall is that I have to start wearing pants. Ugh. Any woman with vulvodynia and/or pudendal neuralgia understands the pain of pants.

I've survived my first week back at work and I've had to wear pants and undies every day. Well, actually I couldn't take it today, so I'm going comando. I really can only wear panties for so long in a day before my clit starts complaining.

I'm back to the same old routine: my day begins with pain at a zero with the burning steadily increasing over the course of the work day. Resting at home after work brings the pain level down, but often not back to zero.

If I go to the gym, my pain level continues to increase. I call it waking the kitty. I'll be on the elliptical machine doing cardio when suddenly my kitty wakes up and starts howling. At that point I get off the machine and go sit on the toilet to rest my pudendal nerve. There's no science or medicine behind that, I just feel like maybe it might help. If nothing else I get to air it out after perspiring. Totally gross, I know...

Once I get home, I continue to rest and tender my pudendal nerve until bedtime. The next day, I wake up and repeat the cycle.

My life is like the movie Groundhog Day except with beavers.

So Much for the Cushion

2009-10-29T20:59:00.002-04:00

I'm home from the honeymoon. The trip was incredible. I saw places in the world I never thought I would visit. It's all kind of a blur. Thank God I have pictures to prove I was really there.

Of course I had to bring my snatch along with me on the trip. I went to a lot of trouble to try and make sure my bits would be as comfortable as possible. I made a special cushion that could fit in a laptop bag. I even had the seamstress who altered my wedding dress make a special cover for the cushion...

Well, we arrived in Barcelona, took a cab to the hotel and I left the damn thing in the cab! I didn't realize my oversight until the next morning when we were packing up to get on the cruise. I can laugh at it now, but at the time I was really upset. I was very worried that the multiple two hour long bus trips in my future were going to cripple me.

The first night on the ship I was not in good form. I was in pain from having sat on an airplane for so long the day before and I was worried that I had developed a yeast infection from the wedding night.

I sunk into a very dark place. I felt trapped: trapped on a boat, trapped in my body, trapped in a bad place in my mind. I stayed up most of the night listening to depressing music and writing. What am I 13 again?!?!? I had very destructive urges, but I didn't act on them. I felt truly tested.

I realized that no matter how far away you go, you can never get away from yourself. I felt disillusioned.

The next day I came out of it and the boat finally left port. We were delayed because the ship had sustained damage on it's way back to Barcelona. The Mediterranean is not calm and smooth in October. We learned that the hard way.

The Mission of This Blog

2009-10-05T20:39:00.003-04:00

I started this blog to share my story with other women, so they would know they weren't alone. I also wanted to let women know that there are treatments available and share what has worked for me. Most importantly, I wanted to show that it was possible to continue to LIVE with vulvodynia.

Let me take this time to clarify: vulvodynia does not have to be a life sentence, but I think that pudendal neuralgia is. Pudendal neuralgia is damage to the pudendal nerve. It is unlikely that damage will heal on it's own and even surgery offers no guarentees.

I don't think there's a magic cure for either afliction. I think it is something you have to work for every day to ensure that you are as comfortable as possible. It is in that vein that I share my experiences. There are oral and topical prescriptions that I take and physical accomodations that I make daily to avoid causing myself any pain. I have good days and bad. I try to share them all.

There are days when it does get to me and on those days I go to this blog to share my sadness and frustration. I do so with the hope that others will feel a sense of connection and understanding.

It is NEVER my intention to make others feel worse about their condition. If my words have caused any of you to feel dispair, I'm so sorry. I'm not a medical doctor, I'm not an expert. I am only one person sharing my pain and my experience on the internet.

I am successfully living every day with vulvodynia and pudendal neuralgia. I've had to change my life to work around it, but I have an active sexlife and I even have days with no pain. I just take one day at at time and try not to focus on the big picture.

Still Sick...

2009-10-04T19:32:00.002-04:00

I have had a fever for six days. I am weak and exhausted. I've had horrible headaches daily. I'm getting really tired of being sick.

I'm supposed to go to work tomorrow. There are things I need to do before I take three weeks off, but it's my job's policy that I not return until I've gone 24 hours without fever. I don't want to risk getting my coworkers sick.

I hadn't told my bosses my diagnosis, but at this point I think it's necessary. I sent them an email explaining that I most likely have H1N1 and asking if they would like me to report to work tomorrow. I'm still waiting for their reply.

My fiance and my family don't want me to drive. On Friday I decided to run an errand and knocked the driver-side mirror off my car before I made it out of the driveway. Probably a sign I shouldn't be behind the wheel...

This is just getting out of hand. I need my life back. I need to get better. There are only six days until the wedding.

Swine Flu & Vulvodynia

2009-09-30T22:36:00.002-04:00

Ten days until my wedding, and I find out I probably have swine flu. I spoke to my doctor today and told him my symptoms. He said, "I think you have the flu." I told him that was strange because I got a flu shot 15 days ago. He said, "you didn't get a shot for swine flu and that's what's going around right now." His lab doesn't test for swine flu and he said that can often be inaccurate. He advised me to stay home, avoid people and not go back to work until I've been clear of a fever for 24 hours.

It started yesterday. I woke up feeling sick, but I shook it off and went to work. As the day wore on, my nose was dripping like a faucet. It wasn't like snot. It was like I was crying big splattering tears from my nose. I started to feel weak and light headed. I asked my supervisor if I could go home, although I was concerned about how I would get there. I got myself home and collapsed into bed. I felt like someone was sitting on my chest. It was exhausting to breathe. My neck, my arms and my legs ached when I moved.

I told my mom and she offered to drop off some medicine and soup. She called me after she had driven away to tell me she had left it on the porch. It's like I have the plague. My sister is afraid to see my parents because they saw me on Monday.

My fiance is sick, but he seems to just have a head cold. Thank God! I don't know how he doesn't have it. I pray that he doesn't start showing symptoms next week. We'll really be in trouble!

I'm trying not to think like that because it just makes me anxious. There's nothing I can do. It's all out of my hands. All I can do is try to get better.

I feel horrible. I hate feeling trapped and isolated at my house. I hate doing nothing. I always like to be busy and productive. There are things I need to do at work before we go on our honeymoon and I just can't do them. I physically need to be in the office to take care of them. I'm stressed about that.

The only positive note in this whole mess is that being sick is very good for my vulvodynia and pudendal neuralgia. I'm essentially reclining all the time. I'm not putting any pressure on my nerve. At least that's good. I couldn't take any extra pain right now.

Vulvodynia VS The Wedding Dress

2009-09-25T10:47:00.003-04:00

I've been cool as a cucumber through this year of wedding planning. I haven't been stressed about anything until Tuesday. That night I went for my last dress fitting. It was a balmy day and my seamstress didn't have the air conditioning on in her house. It felt a little stuffy, but not uncomfortable.

Once the dress was on, it was a different story. My dress is large. I have a huge crinoline and a ball grown skirt. There have to be at least 30 layers of fabric between my lady business and the outside world. I started to get hot in my dress and my flower began to wilt.

I hadn't thought about being hot in the dress. I started to feel very anxious. If I'm hot in that dress, I'm going to sweat. If I sweat too much, I could develop a yeast infection or a spike in lactobacillus or a smegma build up. All of which could lead to days and even weeks of pain.

One night of sweaty kitty could ruin my wedding night and even my entire honeymoon. Would you want to spend 8 hours walking in a foreign city if your crotch was on fire?

I started to feel hopeless and overwhelmed. Normal women don't have to worry about this nasty crap on their wedding day. It's not fair. I hate my vagina sometimes.

On the car ride home I curled up in a little ball. I felt powerless. My mom tried to comfort me. She told me to request that the AC be on at the reception location.

Since that night of panic, I've picked myself up and started strategizing. I made the request for AC and they were happy to oblige at the reception site. I'm going to pack a hand-held fan and baby powder in my bag along with a few pairs of cotton panties.

I don't really wear panties of any kind because the pressure irritates my clit. I purchased some hipster panties that have some extra clam room. I'm going to try wearing them a few times and see how my clit manages.

I don't want my stupid crippled vagina to ruin my big night. I'm afraid I'm going to have to periodically sneak away to air out my goods. I really hope it doesn't come to that.

Same Smegma, Different Day

2009-09-17T15:21:00.002-04:00

Ugh! This is driving me crazy and it's so gross! It seems like every other day I have an accumulation of smegma in the folds of my clit. This causes pain, irritation and swelling. Smegma accumulation is a natural occurrence. In normal women, they don't even realize it's happening. It builds up and sloughs off, just like any other skin cells.

Unfortunately for me and other women with vulvodynia and pudendal neuralgia, it can be extremely uncomfortable. Even worse is trying to get that smegma out of those folds. The stretching and pulling and rubbing only heighten the pain.

I went and saw my doctor about this matter a few weeks ago. I asked him what I could do about it. He said soak, use a squirt bottle or a hand-held shower head. I have a hand held shower head. When there's something really lodged in there, naturally my shower head fails.

I was hoping he would tell me something useful! Something I hadn't already tried. Even doctors don't have all the answers...

I am really looking forward to the season change. The summer heat has obviously exacerbated this rather indelicate problem to the Nth degree. Cooler weather means no steamed clam. I can't wait!

2009-09-14T22:16:00.002-04:00

Dear Readers,

As you all know, I suffer from chronic pain. There are days when the pain is unmanageable and I have to resort to prescription pain medication to be comfortable. On those days I take Vicodin, an acetaminophen combination drug.

The U.S. Food and Drug Administration (FDA) is considering advice from its Advisory Committee that would eliminate all prescription acetaminophen combination medications (like Vicodin, Percocet). These changes could negatively affect me and other people suffering from pain who rely on these medicines every day.

I signed the petition "Acetaminophen: Educate, Do Not Regulate". I'm asking you to sign this petition to help us reach our goal of 5,000 signatures. I care deeply about this cause, and I hope you will support our efforts.

Thank you for your support,
Quinn

Not the Best Idea... But So Worth It

2009-09-01T12:28:00.003-04:00

I've been feeling a little blue lately. I'm feeling quite stuck. I'm stuck at my job. I'm VERY thankful to have my job, but I really want to move forward with my new career. I'm stuck with the 3 year evening and weekend nursing program because we can't afford for me to go to school full time. And I'm stuck in a house that's entirely too small for the two of us.

Everything in our lives is either on hold or moving at a glacial pace. Sometimes it gets really discouraging.

My partner gave consoled me and made me feel a lot better. He also suggested a shoulder massage in the bathtub... We lit some candles and ran a bath. This was the first time we were going to break in our newly renovated bathroom. Wow it was HOT in there and I am not taking about the water temperature.

One thing lead to another and we decided to do some aqua aerobics, if you know what I mean... I always have to use a lot of KY to protect myself from trauma. I knew most of it would wash away in the tub, but I was willing to take that chance.

There was some pain and some friction, but it was incredible. That was two days ago and I'm still hurting. All the pain is again concentrated in my urethra again. UGH.

Right now, I'm saying it was worth it. If I still feel like this next week, I may feel differently about my aquatic adventure. Hopefully I can rest enough over the holiday weekend to allow my pudendal nerve to recover...

This Flare Has Passed

2009-08-26T15:31:00.002-04:00

I took a few days off to go to the beach, and it did wonders for my nerve flare. I got to relax and keep my body in positions that didn't agitate my pudendal neuralgia. I am feeling so much better.

I even managed to spend a few hours a day in a bathing suite without irritating my clit! I think the secret was wearing a bathing suite with a little skirt attached. I was able to keep the crotch fabric away from my goods without anyone noticing my droopy drawers.

When I got back from the beach I resolved to continue to take better care of myself. I stopped where my wedge sandles to work. I'm wearing my flat Danskos. They may not look the best with a skirt, but frankly my deli meat is more important.

I'm standing more at the office and not cheating my crouching on a desk chair. It kills my knees and eventually my nerve starts to flare. Even standing for too long gets it going, but there's no question, standing is better than sitting.

I've avoiding using my compound lately because I didn't want to put anything nerve my inflamed urethra. The crazy thing is I've been able to have virtually pain-free sex without using the compound! Maybe the compound was doing more harm than good.

I'm going to avoid it for as long as I can. We'll see what happens.

Purse Design Fail

2009-08-13T12:08:00.002-04:00

I just had to share this!

see more Fail Blog

Happy F-ing Birthday

2009-08-05T11:45:00.002-04:00

Monday was my birthday. I got to spend part of my "special day" at my doctor's office. My urethral pain has persisted on and off for more than three weeks. I've also had random bouts of swelling in my clit. I wanted to get checked out and find out what I needed to do to make it better.

My doctor had just gotten back from a vacation and I could tell he didn't want to be back. I was the last patient of the day and it seemed like everyone wanted to just get out of there.

When he called me into his office, I told him my symptoms. He then told me to go to the exam room and get undressed from the waist down. I know this routine by heart. He used the speculum to take a sample and then used his finger to feel the length of my urethra. I was in agony.

After taking a look at all my samples he met me back in his office. He told me that everything looked normal so it had to be a nerve flare. The problem is, there's no trauma I can attribute it to. Why is it happening now? My first thought was, "Oh God, it's getting worse." I started to fight back tears.

For once, my doctor really didn't have any answers. He didn't have a good idea of how to combat the problem. He told me the objective was to knock out the pain long enough to quiet the nerve.

He told me I could apply Lidocane to the opening of the urethra, if that didn't work, I could use a syringe and inject the Lidocane directly into the urethra. If the Lidocane fails he could give me a shot right in that area. All of these options sounded terrible. I couldn't imagine putting anything in there. I was in so much pain just from his exam that I couldn't sit.

I was troubled because it seemed that he really didn't know what to do with me. What's worse, he didn't have much patience. He was rather flip about the whole thing. He told me that if my condition were getting worse, most likely, the pain would be everywhere and not focused in one spot.

That was of no comfort to me. I cried to entire ride home. I felt so scared and discouraged. I can normally deal with the pain and still have a normal sex life, but this is so bad it's made me gun shy. I'm afraid to try on a good day.

Serious Design Flaw

2009-07-28T13:37:00.002-04:00

On more than one occasion I've discovered that my clit was tender and swollen. Upon a thorough examination I've always found a buildup of shed cells stuck in one of the many nooks and crannies. Why are there so many folds down there? How do those folds benefit us?

Men would have a similar problem, but we circumcise them. In the USA, we take away the ugly extra folds of the foreskin that could cause hygiene problems. Why can't I get a little taken off the top? I'm not talking about full female circumcision. That's a horrific practice. I would just appreciate having my clit opened up a bit so stuff wouldn't get stuck in there.

I woke up in pain this morning. Usually I'm pain free in the morning, but today my clit feels raw and the opening of my urethra burns. The worst part is the urethral burning seems to be independent of peeing. What is going on down there?!?!?

I can't get comfortable and I have a painfully (yes, pun intended) long day. I have class until 10pm on top of a full day at the office. I'm going to go crazy. I can't skip it. It's the last class before the final, plus I have a quiz.

Sometimes, I wish I could just leave my vagina at home.

The Pee Pain Cleared Up

2009-07-21T11:49:00.002-04:00

On Friday night my partner and I were packing for a weekend with his family. We got a little distracted by each other and wound up getting it on. There was a shot of pain through my urethra at the beginning. The pain gave way to pleasure and relaxation. It has been about a week and a half since our last encounter. I needed it.

Unfortunately because my area was out of whack, I didn't use my compound all week. That became painfully obvious when I went to clean off. The burning was unbelievable. I thought, "God is this what it was like in college? No wonder I cried every time I had sex!" Ouch! I used some lidocaine to numb the burning. My urethra was also in flames.

I worried that I had crippled myself for the entire weekend. I took have a vicodin before we got on the road. It was very difficult to find a comfortable position in the car. I squirmed around a lot, hoping my partner wouldn't notice. Lucky for me, he can be utterly oblivious.

When I went to bed that night, I applied the compound and took another vicodin. In the morning I was much better. I'm not sure how sex and a drug cocktail put an end to my urethral pain, but I'm grateful to be better.

It Hurts After I Pee

2009-07-17T11:47:00.003-04:00

Since last Saturday I've had a sharp pain in my urethra after I pee. It feels like someone stuck a knitting needle in there. It's very uncomfortable. I haven't found a position that alleviates it, but I have found lying down in certain positions makes the pain worse. Strange.

So the question is: do I have a nerve flare concentrated in my urethra or do I have an infection that is being magnified by my pudendal neuralgia? I really don't know. I don't have any other UTI symptoms, like urgency or increased frequency.

There have been times when I've had sex in certain positions and the opening of my urethra has been hit or rubbed the wrong way. The pain is similar, but it wasn't linked to peeing. This time, there was no sexual trauma.

I don't know what could have brought it on besides the summer heat. Let's face it ladies, on a hot day, you're going to sweat down there. Pink part perspiration has caused me a lot of problems lately.

When my kitty gets overheated, my lactobacillus population increases causing burning similar to a yeast infection.

Could my hot muff have caused my urethral pain?

I'm drinking cranberry juice and hoping it will go away on it's own. I just saw my doctor last week. If it's not better by Monday I'll call. This is contrary to my, "Why Suffer," motto, but it's good to be sure you need medical assistance first.

I haven't been able to have sex all week and, of course, it has to be the week my partner has eyes for me. Hopefully he'll still be hot for me when this goes away. Maybe I'm just more appealing when he can't have me... or I'm not asking for it...

There might be a lesson in all this.

Just to Clarify

2009-07-11T23:53:00.003-04:00

I believe you have to love your partner, warts and all. I'm far from perfect and so is he. At times this blog becomes my arena to bitch late at night about a problem that we're having. I'm very grateful to have a place to vent. I really need it sometimes.

My partner is unfairly represented on this blog because I don't write about the good stuff. That's not what this blog is about. This blog is about my chronic pelvic pain and that pain plays a role in my relationship at times.

My partner is an incredible man, with a good heart. I'm truly blessed to have found him. I would not be where I am without his positive influence on my life. I have never been so happy or so well. He brings out the good in me that I didn't know was there. He supports my dreams and he believes in me. He makes me happy. Thinking about him makes me smile. Even after three years, I still get starry eyed.

I can't wait to be his wife. I am so proud to have him.

I'm Not Sure How To Answer That: On Marriage

2009-07-10T23:42:00.003-04:00

I'm getting married in three months. Scary, I know... My fiance is Catholic and it was important to him and his family that we have a Catholic ceremony. I am not Catholic, so it won't be a full mass, but it will still be considered a sacrament.

There are a lot of requirements in order to have a Catholic marriage. We had to go to marriage classes, take an hour long online exam, complete a lot of paperwork, and answer some very personal questions. The Catholic church takes marriage very seriously. I respect that.

For any normal woman in the hot seat, the questions wouldn't cause concern, but for a woman with vulvodynia and pudendal neuralgia, it's a different story.

At our first meeting with the deacon, we had to meet with him separately to answer a series of questions. My fiance went first. I figured if there were any road blocks, he could navigate them better than I. He was asked, "do you know of any problem that would prevent you from having a physical relationship with your future spouse?"

Naturally he said no, but he felt that in some ways his answer was not entirely true.

When my turn arrived, I was asked, "is there any condition that could prevent you from having children?"

In both cases the answer is technically yes. Yes, there are times when I cannot have intercourse with my partner because I have vulvodynia and pudendal neuralgia. And yes, because of those conditions it will be more difficult to have a child and natural birth is out of the question. But that's not the right answer.

I can't stand to be deceitful, but I don't think that line of questioning warranted a lecture on chronic pelvic pain.

The second time we met with the deacon, I was asked if I suffered from mental illness. I wasn't so cool with my answer that time. The question caught me completely off guard.

"That's an awfully personal question. What do they consider mental illness? I have anxiety sometimes, does that count?"

"I think they mean something debilitating like being institutionalized or having something like schizophrenia."

Hmmm. Aren't there HIPPA laws in place to protect my medical history?

I want to reiterate that I respect the desire of the Catholic church to try to ensure that their unions involve many children and don't end in divorse. I guess I just found it ironic that I got hit with those questions.

At this stage, I am capable of having fairly frequent intercourse and I see no reason why I couldn't have children. There is always the possibility that my world will come crashing down on me and I will lose those luxuries. I don't, however, think that's something that Catholic church needs to worry about.

I Take Vicodin and the FDA Wants to Take It Away

2009-07-01T10:18:00.003-04:00

This is outrageous! A panel has just recommended that the FDA ban Vicodin and Percocet because they can cause liver damage. What's next, are they going to ban alcohol? How many people suffer from liver failure related the excessive alcohol intake? The important word in that sentence is excessive.

How many people who had liver failure from these meds actually had a prescription, of that number, how many of those people were taking them correctly? One concern is that people would take Vicodin and then take Tylenol or NyQuil, not realizing that all of these drugs contain acetaminophen. Then why don't they just put a big warning on the bottle, "this drug contains acetaminophen and may interact with other drugs that contain acetaminophen."

I take Vicodin as needed for pain. On average, I probably take it once a month. I'll take one pill in one day and no more. I don't mix it with other pain killers or cold medications. I take it safely and responsibly. But apparently the FDA panel doesn't think I'm capable of properly taking my medication. Instead of making it more difficult for these medications to be prescribed to the wrong people, the panel advises that the drugs are taken off the shelves completely. It doesn't matter that many Americans rely on these medications to living comfortable, functional lives.

This decision is so painfully short sighted! They aren't thinking about the people who need these medications, they are only concerned about the people who abuse these medications, the people who shouldn't have access to this medication anyway.

I'm frightened and angry. I strongly believe that I have the right to take this medication responsibly. If the FDA takes away my medication, the FDA takes away my rights as a patient with chronic pain.

I'm So Much Better and What Has It Gotten Me...

2009-06-21T00:53:00.003-04:00

In some ways I was better off when I was crippled by vulvodynia and pudendal neuralgia. I'm beginning to worry about how sexually compatible my partner and I are. When I had to go weeks without intercourse, we didn't have a problem. He understood and I did plenty of things in the interim to keep him satisfied. Now that I have a pretty good handle on the vulvodynia and pudendal neuralgia, I can have sex more frequently. I can even have sex two days in a row! Although I can, I usually don't, because my partner isn't in the mood.

I have a lot of trouble wrapping me head around that. Call me sexist, but he's a man! Shouldn't he be perpetually in the mood? Shouldn't he be ready to go any time? Shouldn't even suggestive dialogue get him turn him on? Apparently not.

I've never been with someone like this before. Every guy I've ever been with has had a very strong sex drive. Even the one night stands, obviously they wouldn't have happened if the guy hadn't been ready to rip someones clothes off. I was just stupid enough to volunteer.

Sexual compatibility is extremely important to a successful lifelong relationship, even the Catholic Church thinks so. That's why I'm up at my computer at 1:00 in the morning. I'm worried that my partner cannot satisfy my sexual needs. How can I spend the rest of my life in that situation? How can I work so hard DAILY to enjoy sex only to be rejected time and time again?

There's always an excuse, "I'm exhausted, it's too late, I've got a lot on my mind." It's not going to get easier, we're always going to be tired, there are never going to be enough hours in the day, and we're always going to be worried about something, if we can't manage to have regular sex now, we never will.

Not So Annual...

2009-06-11T23:23:00.002-04:00

I had my "annual" with my regular gynecologist on Wednesday. I hadn't seen her since May of 2006! That's terrible. When you see a gynecologist on a painfully (yes, bad pun intended) regular basis, you forget there are other important reasons to see a gynecologist. Oops!

I warned her that I was in some pain that morning and to go easy on me. She used her smaller speculum, but you could have fooled me. It hurt like crazy. I think that thing should be lubricated before it gets inserted. She did all the standard STD tests, leaving out HPV. Apparently it's so common in women in my age group that they only see fit the check for the virus if the pap test comes back irregular. I knew HPV was common, but I had no idea it was THAT common.

Since my gynecologist also handles pregnancy and delivery, I decided to ask her a few medical questions. I'm a very serious planner and with my professional and academic goals, I really need to schedule in a pregnancy or two between degrees.

I asked if it was safe to continue to take Neurontin during pregnancy. She said she wasn't sure, but she thought so. She said that would be better than having to take narcotics for flares. I also learned that other medications that I take could still be taken during a pregnancy with minimal risk.

I am tremendously relieved. I thought I would have to be out of my mind and in constant pain for the entire pregnancy. After so many positive answers I decided to ask the most important question: would she permit a C-section given my vulvodynia and pudendal neuralgia. She told me that was completely reasonable.

Now I feel like pregnancy is a real possibility... down the road... way, way, way down the road.

One of the Biggest Accomplishments of My Life

2009-05-28T12:43:00.002-04:00

Monday May 25, 2009 marked one year free from the grips of my eating disorder. I have lived with anorexia for 13 years. My eating disorder has been the one problem I couldn't fix. I continued to periodically torment myself with food. I starved myself or through up the food I ate. It became another form of self-mutilation. When things in my life were going wrong, I turned to food as a way to hurt myself.

One year ago I through up so hard I broke blood vessels in my face. My head began to pound and I had stop myself. Hours later, the headache continued. The next morning it was still there despite doses or Motrin and Valium. Driving to work that morning, every time I hit a bump in the road, I would get shots of pain in my head. It was excruciating and more so, it was scary.

Another day passed and the pain was no better. Every bump, every pothole, every speed bump sent jolts of pain into my head. I started to worry that I had broken or damaged a blood vessel in my brain. I was afraid I was going to have an aneurysm. I called my neurologist and scheduled a battery of tests. I had an MRI, an MRA and an MRV.

Thankfully, I was fine. After 10 days, the pain subsided, but I vowed that that was the last time. I couldn't do that to myself any more and I couldn't do that to my loved ones. I wasn't going to let anorexia kill me.

It has been a long year. There have been times when I've been tempted to self-destruct, but I haven't. I'm healthier than I've ever been. I eat well and I work out twice a week. Every day is a battle, but now I'm strong enough to fight.

Living with a B and Vulvodynia

2009-05-22T14:35:00.003-04:00

This semester I had to take Introduction to Inorganic and Biochemistry. The class is a prerequisite for the nursing program I hope to begin in the Fall of 2010.

This was the most difficult class I have taken so far. The professor was a kookie old man who probably should have retired a few years back. He did not stop to answer questions and he erased figures on the board as soon as he had finished drawing them. He justified that by saying, "it took me this long to write it and it should take you the same amount of time." Of course, he neglected the fact that he was standing in front of the figure as he was drawing it and therefore unless we had the gift of X-ray vision, there was no way we could see what he was drawing. Going to class only confused and frustrated me.

I got a 73 on my first exam and my heart sunk. The exam was extremely difficult. He included material that we had never discussed in class. I'm an A student and I need strong grades to even be considered for the nursing program at any school. I realized that my future was in the hands of a mad man.

I started studying religiously, teaching myself the materail, taking extensive notes from the book and supplimenting it from what I could grasp from lecture. The harder I worked, the better I did. I got an 89 on the second exam and a 96 and the third.

The final was cumulative (ugh!). I studied every day for a week, writing and rewriting formulas and strutures to cement them in my head.

The day of the final I was surrounded by pages and pages of drawings of polysaccharides, fatty acids, amino acids and other organic compounds. I felt confident going into the exam, but the confidence dwindled as soon as I got to the short answer section. He threw in questions that were so far out of left field. No one knew how to answer them. He left us so ill-prepared. (Did I mention that he didn't believe in reviewing because "every class before the exam is a review."?)

When he stepped out of the room for a minute everyone began saying, "what the fuck is this?" At least I wasn't the only one who felt completely lost. I did the best I could and reluctantly turned in my exam, reminding myself that based on my other grades, I could get a 62 and still get a B.

I didn't want to get a 62. I wanted to get an A. It wouldn't have changed my final grade, but I wanted that A for me. I studied harded for that exam than I ever have for anything. I knew the material so well.

This morning I went to meet with my professor to see my exam grade. After all the stress and worry I got an 86. I honestly thought I was going to get a 65. I'm very proud of my grade. I finished the most difficult class that I've taken with a strong B. I'll take it!

Rave Review for the House of Foam

2009-05-15T10:50:00.002-04:00

After work on Friday, I rushed over to the House of Foam not knowing what to expect. It was a combination foam shop and car stereo place. They had foam in different strengths and thicknesses. I brought in my modified Brookstone cushion and the nice man traced it onto a specific foam. With a vertical saw, he cut out the pattern to make two different cushions. It was so quick and easy! And the best part... each cushion only cost me $11! ! !

I went with a firmer foam this time that was still very comfortable. I was very impressed with the store and the gentleman working. I would highly recommend checking out House of Foam for your lady part needs. Unfortunately, it's a local store.

I took my new cushion out for a test drive as soon as I got back in my car to drive home. It seemed to work well, but the big test was going to be the next night at the baseball game.

Because I felt self conscious and I also wanted to keep it clean, I carried my cushion in a large plastic bag. I had no problem getting it past security. When we got to our seats, I took the cushions out of the bag and spread the bag over my seat, before positioning the cushion. After a few adjustments, I was ready to go.

I am proud to say I sat for 3 hours with no discomfort! The game wasn't so bad. There were a lot of homeruns. I wasn't really paying attention though. I think I enjoyed the game because I had wonderful company. My finance was in great form. He was loving an affectionate, something that is rather out of character. I could tell that he was so happy to have me on his arm. The couple who brought us to the game were so much fun.

Best part was, my cushion passed with flying colors.

Leave Me Out Of The Ball Game...

2009-05-08T13:46:00.004-04:00

Sing it with me:

Leave me out of the ball game
Leave me out of the crowd
I need a cushion or I can't sit
Why should I put up with this shit

I am not a baseball fan. When I'm subjected to it on television, I'm bored out of my mind. Tomorrow night I'll be subjected to it in person. My fiance and I, along with another couple are going to a baseball game. I'm going because I really like the other couple and I thought it was more of a "thing to do." I didn't think we'd stay that long. Turns out the guy we're going with is a die hard Yankees fan. Looks like we'll be there all night...

Of course, even if I didn't have an aversion to baseball, this would be a problem. Everyone sits at a baseball game. I can't be that weird chick who's standing up the whole time. People will throw stuff at me. Frankly, I've had enough shit thrown at me lately.

Guess that means I'm sitting...

The coushin I have is Tempur Pedic, which means it gets softer as it warms to your body. That was fine in the winter, when I bought it, but now it's warm. As soon as I put my big butt on that cushion it turns into a pancake! No support at all. It's not going to do me any good tomorrow when it's 80 degrees.

Chances are I'm already going to be a bad sport (bad pun intended) so I have to make a better cushion. That way at least the game won't be physically painful. But trust me, it will still be quite painful!

Today after work, I'm going to the House of Foam to have a new cushion made. I need a more supportive foam that won't be influenced by temperature. I've never been there before. Hopefully this goes well and the price is right. I might have a couple made.

I'll write a review later.

When Life Sends You More Things You Can't Fix

2009-05-02T21:51:00.002-04:00

Life with vulvodynia and pudendal neuralgia is difficult enough. There's no cure and there's only so much you can do to make yourself comfortable. But at least that's my problem and I have to manage it or not manage it alone.

I do everything in my power to not let it spill into the rest of my life. More often than not, I see no point in letting people in on my pain because there's nothing they can do except feel bad for me. I don't want to make people feel bad for me. Sometimes I really need the support and I'll talk to someone, but generally not my fiance.

I'm currently battling another problem that I can't fix because it's not mine. My partner can be extremely moody. When he gets in a state, he completely shuts down and just won't speak or he's curt and nasty. Both options are awful. It's happening more and more and there's nothing I can do to help him. He won't communicate with me about what's wrong and try as I might, I can't get him to snap out of it.

When he gets like that, I feel trapped. He inevitably pulls me down with him. His behavior has me worried and discouraged, but there's nothing I can do.

How do you cope with a moody partner? What is the best way to handle it? Is it ok to leave for a little while so you don't get sucked down into it when he's having one of those days?

I honestly don't know what to do to protect myself from his moods without making things worse. Will my leaving for an hour or two when he's sulking and brooding hurt him? I tried to go out to get myself a sandwich on a particularly bad night and I felt so guilty I just turned around and went back home.

There's no manual on how to deal with this. Technically there are professionals who can advise me on this matter... I'll probably turn to my therapist next. I really need to learn some coping techniques because this is killing me.

If I Ever Thought Neurontin Didn't Work...

2009-04-23T11:01:00.002-04:00

I was wrong. I've had a very manageable pain level for the last week. I've been very careful at work and at the gym and it's paying off.

Yesterday was Administrative Appreciation Day. My bosses took me and the other admin staff to lunch. It was a long meal. By the time we got back I only had an hour to catch up on work before I had to head out to the salon.

In my haste, I completely forgot to take my mid-day dose of Neurontin. It occurred to me as I was walking to my car, but I didn't think it mattered. Trust me, it did.

My Brazilian bikini wax was so painful this time, I almost had to tell her to stop. Every place she spread the wax hurt and when she pulled the fabric strips off my skin, I thought I was going to go shooting off the table. I tried to use mind over matter and force myself to relax, but nothing could block out that pain. As she rubbed a strip over my right lip and the outer edge of my clit, I thought I was going to scream.

The pain and the anxiety of anticipating more pain made my head hurt. It took so much strength to keep my composure that by the time it was over I felt completely exhausted.

I'm still in pain today. The area feel extremely raw. Waxing is not for everyone, especially women with vulvodynia and pudendal neuralgia, but for me it's normally worth the pain. I know for next time to be sure I've taken my Neurontin well in advanced.

Frankly, it's good to know Neurontin is actually worth taking. I'm on quite a few meds and I'd like to start going off of them sooner rather than later. I know in a few years I'll have to stop all my prescriptions in order to have a safe pregnancy. Neurontin, I'll save for last.

A Few Hard Lessons

2009-04-17T12:56:00.003-04:00

I work in a rough area of a major city. To get to my job, I have to drive through an even rougher area. Yesterday, I went out and ran an errand during my lunch break. On my way back to the office, I saw a boy bend and pick something up in the gutter. He showed it to his friend. At that point I turned my attention back to the road.

Suddenly, I heard the sound of a rock hitting my window. I turned and saw the kids laughing. A little ways down the road I pulled over to call the police. I got out of the car to inspect the damage and see if the kids were approaching. They saw me and ran around the corner. I didn't know my exact location and as I walked to see the closest street sign a rock flew at me. The kids had run around the block and were now throwing rocks directly at me. I got back in the car and waited for the police to arrive as rocks continued to fly.

The kids who through rocks at me walked across the street staring me down to meet up with a friend. I wrote down a description of the boys clothes, pretending not to notice them. One boy in particular seemed to have it out for me. He circled my car like a shark. I pretended not to know who he was. He brazenly walked right by my car, looking in at me. I kept my gaze forward, still pretending to be unaware.

He and his friends disappeared momentarily before two more rocks flew at my car. One hit the center of my windshield with a loud crack. I jumped out of my car and yelled, "Stop it, asshole! I called the police!" I thought this would scare them away. I thought this would make them stop. I continued to wait for the police.

Now I was scared. Tears were rolling down my cheeks. I tried to keep my composure. Then two more rocks hit my car. CRACK! CRACK! One hit my windshield and one hit my roof. I jumped and screamed when I heard the sound. I didn't know where the rocks had come from this time.

I began to completely fall apart. I called the police to tell them that I couldn't wait for them anymore because I feared for my safety. I wasn't thinking clearly. I got out of my car to retrieve one of the rocks for evidence. More rocks flew at me when I stepped into the street.

I ran back in my car, blinded by tears and drove away. There were so many people walking along that street. School had just gotten out and kids were walking home. Families were sitting on their front porches with their young children. No one stopped to help me. No one cared. They just stared at me as rocks bashed into my car and flew at me.

Two blocks away as I sat at a light, I saw the boy who circled my car like a shark. He was sitting on the steps of a church. He saw me and got up, coming at me, making threatening gestures. I was terrified. Before he could make it to my car, the light changed and I floored it.

I drove back to my parking garage shaking and crying. It was then that I realized that they had shattered part of my windshield. I could hear the sound of one of the rocks scraping around the roof of my car as I circled my garage searching for a parking space.

When I parked I took the rock with me to show the police. It was a large piece of concrete. I called my friend at work and told her what had happened. She came to be with me while I waited for the police to arrive.

I tried to get a hold of myself, but I couldn't. The first officer on the scene was curt and unkind. He took my information and told me I should have left the scene immediately. I didn't know I could leave. I had reported an incident to the police and I thought I had to remain in that location until the matter had been settled, like a car accident. I also thought that there would be consequences for the boy who throw the rocks and harassed me, but I was wrong.

Because the rocks never hit me, the incident was being filed as destruction of property. A description of the boy would be included in the report, but that would be the end of it. When I realized how the system worked, I began to feel so angry at myself. I felt like a fool. I waited there for the police for nothing. My car was badly damaged and there would be no consequences for the boy who terrorized me.

As I began to completely lose faith in the justice system in my city, the second cop on the scene asked me if I wanted to ride along while they looked for the boy. I said ok and my friend and I climbed into the back of his cruiser. I was terrified, but excited at the same time. I leaned over to my friend and asked, "Is this the craziest thing you've ever done?" "I think so," she said.

The cop put his lights on and went from 0 to 75 in seconds, tearing up a major road. He turned on his siren to get through intersections. We didn't have seatbelts in the back, so we had to hold on tight.

The novelty wore off and the fear sunk in as we got closer to the crime scene. My whole body started shaking. What if we did find him? What if he did get arrested? What would he do to me then? He knew my car and he knew my face. What kind of retribution would he seek for my tenacity? I ducked down in the car. I didn't want people to see me, but every person we passed on the street stared at us in the back of a speeding police car.

The kid and his friends were gone. The cop brought us back to the garage and dropped us off. I collected my police report and my friend and I went back to our office. The work day was nearly over.

I learned a few hard lessons that day. Never stop your car when someone throws something at you. You can file a police report later in a safe location. I also learned that there's really no punishment for that kind of crime. Those kids got away with destruction of property and attempted assault. They had no fear. It's frightening to think what they could be capable of. I strongly believe that karma will catch up with everyone person who threw rocks at me that day, unless they turn their lives around. They are all racing down a terrible path, one all to common on my city.

Ladies, please taking something away from my ordeal. Don't put your lives in jeopardy for something stupid like a car. Keep yourselves safe.

Settling Into A Routine

2009-04-09T23:14:00.002-04:00

I've had a fairly good week. I've managed to go to the gym twice with minimal pain. Today I felt like Goldilocks. I started with the running machine. I got through 13 minutes before my nerve started to flare, so I moved to the elliptical, but that hurt immediately, then I tried the treadmill, a long shot I know, and what do you know, that hurt more. I decided that 13 minutes of cardio was "just right."

The estrace cream seems to irritate my clit. I've had to reduce how much and how often I use it. That's ok, I'm not having much sex anyway...

I can get pretty far into the day before the burning starts as long as I'm good about standing in the office. By the time I get home from work, there's always some burning, but most days a short rest lying down is enough to calm the nerve down.

I can't seem to go a full day without some pain. That's distressing, but it's at a manageable level. I'd really like a vacation from my vulvodynia and pudendal neuralgia. We could use some time apart.

A Workout Without Pain

2009-03-31T11:50:00.002-04:00

Over the weekend I went to the gym and got through my entire 45 minute workout without any pain! It was awesome! I've modified what I do A LOT to accommodate my vulvodynia and pudendal neuralgia. Saturday those changes paid off.

I was on the elliptical for 20 minutes, but I only give it 50%. That's enough to get moving and elevate my heart rate to enough to be considered low impact fat burning. Usually by 12 minutes I start to hurt. Reducing my speed and resistance reduced the trauma to my nerve.

Since the last flare I hardly sit to do any weight training. I've been standing or lying down and working my arms, shoulders and legs. I have to sit to do back, but I've VERY careful.

I'm extremely relieved that I finally had a pain-free workout.

I'm not a gym-nut, by any means, but I've found that exercising makes a big difference in my life. Working out makes me feel proud of myself and satisfied. It's also helped reduce my anxiety and helped me fall asleep faster. Sleeping has been a problem for me since college. I'm now sleeping without Ambien. I've been on Ambien for 3 years. Finally, going to the gym has improved my appearance. I gained 25 pounds on Lyrica and I've spent a year and a half trying to work it all off.

I highly reccommend some form of exercise to any woman living with vulvodynia and pudendal neuralgia. Impact can irritate the nerve, so don't go out and run a marathon or walk five miles, but get your heart beating. It feels good.

Thank You

2009-03-25T11:53:00.003-04:00

I want to thank all the brave and wonderful ladies who participated in the online vulvodynia support group meeting last night. Thank you for sharing your experiences and your advice.

It is a great comfort to know that I'm not alone and there are other women out there who understand.

If you missed the meeting last night, you can check out the transcript in the chat box.

Thank you again, ladies.

Reminder: Online Support Group Meeting Tonight at 8:00 EST

2009-03-24T12:14:00.002-04:00

Come interact with fellow patients living with vulvodynia, pudendal neuralgia, vulvar vestibulitis, IC and other chronic pelvic pain conditions.

Rules of Etiquette

1. Please be respectful of everyone in the group. We are not competing for who has it worse. We're all in the same boat, and we all know how difficult it can be.

2. Please remember this is intended to create a positive environment, so please keep your negativity in check. I know this can be a challenge given the subject, but it is necessary for the success of the group.

Here's How It Will Work:

-The chat will be held in the left sidebar on this page.

-Log in to participate by giving a username and a password.

-A topic will be introduced and then everyone will be invited to share her experience.

-The meeting will last one hour

Online Support Group Meeting Tuesday March 24th

2009-03-19T23:19:00.002-04:00

I've had a lot of interest in the Online Vulvodynia and Pudendal Neuralgia Support Group, so I've scheduled a meeting for Tuesday March 24th at 8:00 pm EST. I hope you'll join me and other women who are in your shoes.

One Good Thing About Being A Cripple

2009-03-19T10:26:00.003-04:00

My flare has finally ended. I still have some pain, but that seems to be the norm now. I don't get to stay at zero like I once could.

Recently, I found a ray of sunshine in the cloudy abyss of vulvodynia and pudendal neuralgia. I got a jury duty notice in the mail. I was summoned, but I had to give all my information in preparation of a jury summons. Boo! I did not want to be called for jury duty and now I never will.

When I showed my notice to my brilliant fiance, he said, "can't your doctor write you a note for that?" Of course, how in the world could I sit in some horrible chair for 8 hours a day? There's no way. I would be in agony. I don't think the court system would let one random juror stand up during the trial.

I called my doctor and found out that he has completed the necessary paperwork for other patients. It took me a week to get through to the city courthouse, but now the permanent disability form is in the mail. As soon as I receive it, I have to take it to my doctor to complete and I have to return the original to the courthouse.

I'm very relieved I have the opportunity to do this. I appreciate the civic duty of being on a jury, but it's really not something my body can handle.

I had an important meeting yesterday at work and I had to sit properly at a table for an hour and a half. It started a minor flare. Next time, I'm just going to stand, even if it makes me look unprofessional or conspicuous. It's just not worth the pain to pretend to be something I'm not.

Finally Some Relief

2009-03-11T11:35:00.002-04:00

The Clindamicin has made a big difference. My burning has dissipated to a tolerable level. I'm glad my doctor figured out the source and prescribed the right treatment. I was even able to get my monthly wax job!

I've learned that while it's good to monitor your symptoms, but for a diagnosis and treatment, I'm better off going to my doctor. For all I know, it was lactobacillus all along and there never was a yeast infection.

My doctor has a policy where you can be squeezed into the schedule on a given day for a yeast check. I didn't want to trouble my doctor or myself because I really thought I had it all figured out. In the end, I still had to go see him. Next time I think I have a yeast infect, I'm starting with him. Even if there's no yeast, he my see another explosion in the lactobacillus population.

Without a microscope and a wet prep, I can't make those determinations from home. Hmmm...

Another Pre-Cancerous Mole

2009-03-06T11:27:00.003-05:00

I can't believe I posted a picture of my bloated maggot toes.

A few months back, I had the infamous mole removed from the outskirts of my anus. My doctor advised that I see a dermatologist to get the rest of my moles checked out. He was astounded that the first dermatologist who identified the butt mole as atypical didn't check me.

I decided for a thorough job I needed to make an appointment with my primary dermatologist. The old guy who saw my ass is my fallback. I can be seen much faster when I call his office. Yesterday I went to the dermatologist and guess what? She found two other atypical moles.

She removed one on my stomach and took pictures and measurements of the one the second toe of my right foot. I have to come back in three months to see if it has changed. I'll probably have that one removed and biopsied then.

I asked my dermatologist why I had so many pre-cancerous growths, especially considering I never go out in the sun. And obviously, I've never tanned my asshole. She told me that sun damage is only one factor of melanoma. I am genetically predisposed to develop melanoma. She told me to avoid being in the sun and to protect myself thoroughly when I do spend time outside.

My dermatologist asked me if I had any history of melanoma, but I didn't know of any. After my appointment I called my mom to tell the latest health problem I have. She told me that my father's cousin died of melanoma. Ding! There's my family history. Yikes!

Fortunately for me, this news isn't devastating. I'm of Swedish and Irish descent. I don't like being in the sun and I'm prone to get overheated. I'm happy to stay under the umbrella on the beach or in a big sun hat.

When Good Bacteria Goes Bad

2009-03-05T15:32:00.002-05:00

I saw my doctor last night and he didn't see any yeast under the microscope, but he did see an overabundance of lactobacillus, the good bacteria that lives in your clam. This could be my body's response to yeast, or it could be something else entirely. In nornal people flora, or bacteria, fluctuations go unnoticed, but in someone with pudendal neuralgia the elevated level can cause a great deal of burning.

I'm taking Clindamicin for the next week to get the flora levels back to normal. Hopefully, that gets everything undercontrol. In the meantime, I'm very uncomfortable and the only relief I get is from a hot bathtub. Too bad I can't keep a bathtub at my job.

I'm Out of Ideas, Time to See a Professional

2009-03-04T10:22:00.002-05:00

I thought the yeast infection idea was a good one. I seemed to get better after taking Diflucan, but this morning I was in buring, itching pain all over my area, from the top of my clit to the base of my vagina! How could I still have a raging yeast infection after 2 courses of Diflucan? What's really going on?

I made an appointment with my doctor for tonight. I didn't want to wait another day. This has been going on for a week and a half and today is the worst day. Today should be my best. I don't get it. Hopefully my doctor will be able to detect whatever is going on down there and get this flare under control.

This sucks!

Finally a Bit of Good News... In the Form of a Yeast Infection

2009-03-03T15:18:00.003-05:00

Friday night, my man went out on the town and I had some quiet time to myself. I was in so much pain that night, I really thought it was ridiculous. I decided to whip out my trusty mirror and my halogen desk lamp to see what was going on down there.

I didn't expect to see anything, but that night I got a clue. There was a small amount of discharge (gross, I know) and I thought, "Oh thank God, it might be yeast! Please God, let it be yeast!" I took a Diflucan and got in the tub for a hot soak.

I assume the yeast infection started after the gym on Monday. I worked out really hard and got really sweaty. I've learned from experience that sweaty bits are often followed by yeast infections. Working out on Wednesday probably only exacerbated the problem.

By Sunday, I saw a good amount of improvement. Unfortunately, I had to work from home on Monday due to snow. I don't have any accommodations at home for my vulvodynia or pudendal neuralgia. I had to sit at a desk of most of the day. I took a second dose of Difluca that day.

I have a lot of burning today. Is it from sitting or is it a remaining flare from the yeast infection? Only time will tell.

Gym Woes

2009-02-27T16:04:00.003-05:00

Last week I had my treadmill trouble and this week it seems that I can't find a pain-free stationary exercise machine. Pudendal neuralgia is ruining my fitness routine.

Monday I went at it a little hard. I was doing short bursts of rigorous activity followed by periods of my normal pace... God, reading this I sound like some kind of workout freak! That couldn't be further from the truth. I started going to the gym after I gained 25 pounds on Lyrica. Exercise has been really good for me. I find it really satisfying and I can see the results.

After 20 minutes of that I was sweaty and tired and I started to feel some pain. I only did standing weights and hoped for the best. It didn't get better and by Tuesday I became more and more aware of my irritated nerve.

Wednesday, I was feeling better, so I thought I'd give it another shot, without pushing myself. Just so I could get my heart rate up. It took me 3 paces on the running machine to realize that was out of the question. I hopped off and got on the elliptical. After 20 minutes going extremely slowly, I started to feel that same burning pain around my urethral meatus.

Give me a freakin' break! I can't do anything. I'm getting really frustrated. I might make an appointment with my doctor to get some advice on what physical activities I can do. I'm feeling like a complete cripple.

I have a horrible flare. I'm in so much burning pain today. It's very uncomfortable, standing doesn't help at all.

This whole situation is exacerbated by the fact that my eating disorder demons have been sitting heavily on my chest all week. Wednesday marked 9 months free of any eating disorder behavior. It's been 13 years since I've gone that long.

It's probably a combination of stress from school, my first exam was Thursday, eating big meals with family and being bigger than I'd like to be. I want to be trim and fit for my wedding. I don't want big flappy arms in all my pictures.

It's a bad combination and I've had a very difficult week. I'm very grateful anti-anxiety medication. It came in handy more than once.

Starting a Database

2009-02-20T11:40:00.003-05:00

For my blog, I would like to start a database of doctors across the country who treat vulvodynia, pudendal neuralgia, pelvic floor dysfunction, vulvar vestibulitis and interstitial cystitis.

If you have a doctor that you see, please send me his or her name, address and phone number. More importantly, please send me any comments you have about that doctor and rate your experience.

It took me 5 years to find the right doctor. With this list, maybe we can help save someone else from years of discomfort and deadends.

Please email your doctor's information to lifewithvulvodyniaATgmail.com or post comments to this entry.

Thank you very much for your contribution.

Sometimes, It Gets To You

2009-02-18T15:38:00.002-05:00

I didn't go to the gym all last week because I was recovering from surgery. On Monday I was back on the horse, but I sensed trouble from the start. I got on the treadmill at a good clip and immediately started to feel sharp pain near my urethral meatus. I promptly reduced the speed and the pain stopped. I did 30 minutes on the treadmill and 20 minutes of weights and abs.

By the end of the night, I was exhausted and beginning the next morning, I was in pain. Same place as the night before. It was dull, but it increased as the day wore on. Sitting really exasperated it.

I saw my doctor during my lunch break. He told me that everything looked fine, but in order to keep the skin from refusing I had to manipulate it. He applied some KY and began spreading open my clitoral hood with his thumbs and index fingers, while pushing my hood up.

"I don't want to do this a lot because it will hurt."

"It already hurts."

He told me to apply lidocaine jelly, wait for the numbness to kick in and then manipulate my business the way he had.

I didn't want to pull my folds apart and rub myself raw. Between the gym flare, caused by my ever-present pudendal neuralgia and the clitoral pain, there was no way I was going near by lady lumps.

I was in pain and feeling down. By the time I got home from work, I was exhausted and miserable. I was in a lot of burning pain and I felt helpless.

I miss the days when my pain was only caused by sex. I don't know what happened to bring on the pudendal neuralgia, but I hate it. I can't avoid it. Pudendal neuralgia affects everything I do.

I started feeling trapped in my body with a life sentence. I am going to be tortured by this pain for th rest of my life and I feel like it's getting worse. I just want it to stop.

I took a percocet after dinner and went to bed.

I'm in much better spirits today. I know thinking like that only makes my situation and my mood worse. But sometimes, it gets to you.

Vulvodynia Heroes

2009-02-16T12:06:00.002-05:00

I'm honored and proud to announce that this blog will be included in the resource section of the book Vulvodynia Heroes: 190 Women Share Their Experience and Treatment by Alexandra Carmichael and 190 CureTogether Members.

I was really happy to learn that Servicing My Chassis will also be featured in the resource section. Congratulations Lora!

For those of you who have not checked out CureTogether.com, take a look. It's a site that "helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research." You can compare your health with people with the same condition, track your health and ultimately make better health decisions.

You don't have to use all the features, but by comparing your health, you are providing extremely valuable data that can help professionals discover novel therapies for patients like you. I think this site has the potential to have a tremendous impact on the future of medical research.

V Day

2009-02-13T14:02:00.002-05:00

I'm off to the beach for a sexless Valentine's Day. I can't have any fun for 2 weeks. I really couldn't have picked a worse time. My fiance's birthday was Tuesday and Saturday is that stupid overrated love holiday.

Frankly, I think it should be call V Day and I think it should be a day to raise awareness about the mysterious snatch.

Every year at my college the women's group performed the Vagina Monologues on Valentine's Day weekend. My senior year I got on board and performed My Short Skirt in the production. It was a lot of fun.

So on Saturday, instead of whispering sweet nothings into your honey's ear. Take a moment to talk to someone you know about your muff and, more importantly, your pelvic pain. It's time to give V Day a whole new meaning.

I hate the word and I never used it in my blog, but let's shout it out. Vagina!

Here's an excerpt from the Introduction to Eve Ensler's Vagina Monologues:

Woman 1:
I bet you're worried.

Woman 2:
We were worried.

Woman 3:
We were worried about vaginas.

Woman 1:
We were worried about what we think about vaginas, and even more worried that we don't think about them. We were worried about our own vaginas. They needed a context of other vaginas- a community, a culture of vaginas. There's so much darkness and secrecy surrounding them - like the Bermuda triangle. Nobody every reports back from there.

Happy V Day, Ladies.

Recovery

2009-02-13T12:04:00.003-05:00

I went into work on Wednesday and my boss sent me home early because I looked like a zombie.

I tried to go to work yesterday, but I couldn't see straight. I know from experience that I shouldn't get behind the wheel of a car when I'm seeing double. I don't want to drive into another parked car.

It was a nice and much needed break. I got to catch up and sleep and do some knitting. I know for future reference that it takes my body a long time to recover from anesthesia.

Honestly, the anesthesia was the worse part of this whole experience. The pain really wasn't that bad. Nothing compared to a flare. I had to ice my folds every night and the area is still extremely tender, but nothing I can't handle.

I worried for nothing, but how could I know? I've tried spreading my beef curtains to find the incision, with no luck. I know it's in there somewhere, but chances are I wouldn't want to see it.

Thank you to everyone for their support and good wishes.

Post-Surgery Was Ugly

2009-02-10T20:39:00.003-05:00

I was ok when I woke up in recovery, but within a few minutes of getting to my mom's house I started to feel horribly nauseated. I choked down some cream of rice and lay still. As the day wore on a developed a migraine. I toke oxycodon for the pain, but it didn't seem to help much.

I took a nap mid-day then tried to eat lunch. As soon as I brought the soup to my mouth, I had to run to the bathroom and lie on the floor, willing myself not to throw up. It was awful.

I used an anti-nausea suppository and was able to choke down some soup. I didn't really feel any clitoral pain. All the pain was in my stomach and my head. There was no color in my face. I looked terrible.

After another nap I had dinner. I really had an appetite, despite the nausea. But an hour later I was back on the bathroom floor fighting the urge to vomit.

I got in bed with a cold washcloth and a dose of vicodin, my normal pain medication.

I didn't learn until today that oxycodon causes nausea! Why didn't anyone tell me? I wouldn't have taken the second dose. Anesthesia makes me nauseated anyway, but I have a feeling my day wouldn't have been quite as bad.

Today I'm feeling better, but I'm accutely aware of my clitoral pain. I feel like I have a big cut. There's a lot of soreness. I can't really get comfortable, but it doesn't seem to be effecting my pudendal nerve. Thank God!

I can't believe it's already Tuesday. I lost a day to surgery and nausea.

My mom was a saint and took incredible care of me. I was in no condition to be alone. I'm very lucky to have her.

The good news is, the pain is not nearly as bad as I thought it would be. The bad news is, I really don't respond well to anesthesia. I'll make sure to bring home a prescription for nausea next time.

Thank you to everyone for your support and good wishes. I'm going back to work tomorrow with advil and vicodin. Hopefully I'll be comfortable.

6:30 a.m. Reporting for Surgery

2009-02-08T21:29:00.003-05:00

I'm pretty nervous about tomorrow. I know it's minor, but the pain has the potential to be major. I don't know how well I'm going to sleep tonight, thinking about my early morning.

Hopefully, I'm worried for nothing. I'll know when the anesthesia wears off.

Bad Night Back at School

2009-02-06T13:09:00.002-05:00

My semester began on Tuesday. I'm taking Introduction to Inorganic and Biochemistry. Trust me, I'm not taking this class for pleasure. It's a prerequisite for the nursing program I'm applying for in 2010.

The 3 hour lecture is held in a lab room with tall lab tables instead of desks. The tables are about waist high and the chairs are small rolling desk chairs. I tried to orient my body in such a way to avoid putting pressure on the nerve, but there just wasn't enough chair. I couldn't fold my legs up and to the side, putting the majority of my weight on my hip.

By the second hour my nerve began to flare. I was in pain and I didn't know what to do. That old familiar pain crept into my throat and my eyes stung with tears. Why can't I sit through class without pain like everyone else? I felt like a cripple, hopeless and angry. Why does pudendal neuralgia and vulvodynia have to creep into every area of my life?

I swallowed my hurt and frustration and stood up. The bench is too low to write on and too tall for a different chair. I awkwardly spread my legs to bring me to right height to use the table as a writing surface.

To make matters worse, my professor is a terrible teacher. He's a pleasant funny old kook, but when it comes to explaining content he's the worst. My classmates were all in shock by his methods and extremely frustrated. I need to do well in the class and it looks as though I'm going to have to teach myself the material.

There's an online learning tool that comes with our text book, but we can't use it because, as our professor stated, "I don't use that crap!" I anticipate this will be a miserable semester.

When class finally ended, I drove home angrily and draped myself on the couch. Obviously, I couldn't sit. I was inconsolable . Thank God for anxiety drugs. I took one before bed to calm me down.

I succumbed to my tears before falling asleep. I hate the thought of living with these conditions for the rest of my life. Especially the pudendal neuralgia.

I have control over the vulvodynia. I use plenty of lubricant and I apply my hormone cream every night. If I'm in pain, I can avoid sex.

I don't have control over my pudendal neuralgia. I feel like it has control of me and it's never letting go.

One Week Until Surgery

2009-02-02T16:37:00.002-05:00

I had my pre-op last week. My doctor reviewed my responsibilities before surgery and reassured me that the procedure was very simple. I asked him if he could show me on the screen where he was going to cut. Although this was out of the ordinary for him, he happily obliged.

With his magnifying camera and the screen above the examining table, he was able to show me where the skin had fused. I could see the build up of cells under the skin. It's funny, that's not where I thought the problem was at all.

I proceeded to hunch over, spread my bits and show him the area where I continually find a build up of cells. He told me that my trouble spot looked ok. I told him that he would probably wind up having to open that area next.

Back in my doctor's office, he told me that there is always the risk that the problem not improve or get worse after the procedure, but it was unlikely. He told me, he could really do it in the office, save for the fact that I wouldn't be able to tolerate the pain. You do not want a patient to flinch when you're slicing her mystery mountain.

I'm nervous, but hopefully everything will be fine.

Another Year Goes By

2009-01-28T16:47:00.003-05:00

Last year on this date I posted a tribute to one of the true pioneers of physical therapy, Florence Peterson Kendall. This year, in honor of her passing and her miraculous life, I want to once again pay tribute to Florence P. Kendall and remember her not only as a physical therapist, but also as my grandmother.

She continues to be my inspiration for trudging forward towards a nursing degree and eventually a Master's in Women's Health. I know she would be proud of me. Even though it's been three years since she left, she's still in my thoughts every day.

The greatest compliment I ever received came from my mother when she told me, "you have Amma's spirit." Sometimes I wish she could see how far I've come. My life was a mess when she died, but I believe in my heart that she knows.

For those of you who still have grandparents or even older parents, treasure them, love them, give them your time. Sometimes it can feel like an inconvenience to go out of your way to pay grandpa a visit, but the time we have is precious and fleeting. You'll be grateful for the moments you shared when they have gone.

I've Been Cheating...

2009-01-22T16:11:00.002-05:00

I think the only way to manage vulvodynia and pudendal neuralgia is to avoid the activities that cause pain. The most obvious for me is sitting, but guess what I've been doing? Sitting. Well not exactly sitting. I hunch down on my kneeling chair with most of the weight on the end of my spine and shins instead of my knees. Basicially, I'm sitting... To make matters worse, I've been knitting a scarf for my fiance and you have to sit to knit.

You'll never guess what came of all this sitting... Another flare. I could smack myself. I know better, but I thought by perching on the kneeling chair and lounging on the couch I was cheating the system and I wasn't really sitting.

Apparently, I was wrong. My pudendal nerve has made it abundantly clear that I was in fact sitting.

I've gong back to lying on the couch and standing in the office. I'm coming out of the flare, thank goodness. And I know for next time that I can't trick my body into thinking that I'm not sitting. If there's pressure, there's pain and if there's pain, a flare is just around the corner.

Invitation to Participate in a Vulvodynia Research Study

2009-01-14T11:58:00.000-05:00

Invitation to Participate in "Exploring the use of online support groups among women with vulvodynia" Research

This is an invitation to participate in undergraduate research conducted by Ms Kate Flynn, under the supervision of Dr. Rebecca Knibb at the University of Derby.

Participation involves an interview of up to thirty minutes. This can be conducted via live chat facilities. The interview covers such areas as your experience of vulvodynia, your reasons for seeking out online resources relating to vulvodynia, and the benefits and disadvantages you have experienced while using them.

Participation in the study is completely voluntary and is open to all women aged 18 or over. Your answers will be quoted as part of an undergraduate research project, however the researcher will not use your real name, thereby assuring the information you provide will remain anonymous. You can withdraw from the study at any time.

If you would like to ask any questions regarding the study or express an interest in participating, please contact the researcher using the details below.

Thank you for your time.

Kate Flynn

k.e.r.flynn1@student.derby.ac.uk

If Only I Were an Oyster

2009-01-13T11:14:00.004-05:00

Yesterday I had an important meeting after business hours and I wanted to look professional. No baggy pants without panties. I wore a sharp pair of gray, fitted dress pants and a button down shirt. Naturally, with pants that fit, I need to wear panties.

The ensemble didn't bother me for most of the day, but by 7:00 pm when I headed home I became acutely aware that something was wrong.

I smiled my way through a lovely dinner that my fiance prepared. As soon as I finished washing the dishes, I had to excuse myself to take a look at my lady flaps.

To call a vag a clam or an oyster seems rather accurate, at least in my case. In nature, a pearl is created when a grain of sand or some other foreign matter enters the oyster and causes irritation. In response to the discomfort, the oyster coats the foreign invader with layers of mother of pearl to make it less abrasive. In the end, a beautiful pearl is formed.

When foreign matter becomes lodged in the folds of my oyster, the skin becomes inflamed and eventually the skin tries to heal over the invader to eliminate the discomfort. What I find are essentially pearls of sloughed skin deep in tiny craters that have formed around previous irritation. This is totally gross, but picture acne scars on your silk flower.

If a cranky oyster could just expel the foreign material, there would be no pain, and of course, not pearls.

Good news for me, bad news for anyone who loves pearls.

Scheduled for Surgery

2009-01-09T11:55:00.003-05:00

I had another really unpleasant clitoral pain flare over the weekend. I discovered material lodged in a fold of skin that I could not remove. I tried warm water in a syringe, I tried my bare hands, I even tried a toothpick. You want to talk about painful! ! ! Oh my God, if I ever questioned whether or not I had pudendal neuralgia, I can't now. The difference in sensation between my inner thigh and my mound of Venus is unbelievable.

Finally, the next day, after repeated soakings and washings, I was able to dislodge the material. I feel better now, but this second incident has proved to me that I need surgical intervention to open up that fold of skin.

In the meantime, I'll continue to use the steroid ointment to open the fold myself, but I'm not optimistic. I'm scheduled for a Lysis of Labial Adhesion on Monday February 9.

A Very Intersting Article

2009-01-07T12:23:00.003-05:00

I read the NVA News a few days ago and I'm still thinking about the second article titled, The Need for Research on Coexisting Conditions by Hannele Rubin, MSJ and Christin Veasley, BS. It outlines a number of different studies that have analyzed the relationship between coexisting conditions, like vulvodynia and IC. One doctor presented a theory that these chronic pain conditions could be cause by a birth defect as the urogenital tube forms in the developing embryo.

I can't stop thinking about that concept, and the more I think about it, the more I feel like it could hold water for me. My whole genital area, from tip to tail is in some way defective: I have the labial fusion on my clitorus, the vulvodynia on the vaginal skin, the pudendal neuralgia, and lastly, the precancerous mole just beside my hiny-hole. Good lord, that's a lot of problems in one concentrated area! The rest of me is fine. I have some anxiety and depression, but doesn't everyone to some extent?

What could possibly explain all these problem?

I don't know, but I hope someone figures it out.

Who knows, maybe someday I'll be testing that theory in my own research study. A girl can dream, can't she?

Happy Holiday Find

2008-12-30T11:25:00.005-05:00

I did some traveling over the holiday season and, like so many, I got stuck in the airport for a few extra hours before departure. During that time I wandered around the airport shops with my future sister in law. In Brookstone she discovered a cushion designed to take pressure off your tailbone and she asked me if I could use it. I got really excited.

The cushion I bought from the Interstitial Cystitis website has been worn down by constant use. I keep it in the car and use it every day. It's served me well but I wanted something with more support.

This Brookstone cushion looked perfect! Only problem was it was $40. I felt quite conflicted. It seemed perfect, but that was an awful lot of money to spend on myself during the holiday season. My wonderful sister in law said she would split the price with me and call it my gift. I hemmed and hawed a bit, but she convinced me to buy it.

After some modifications with a kitchen knife, it fits my body just right. My doctor has advised using a kneeling pad and cutting an opening that would aliviate any pressure on the nerve while sitting. The kneeling pads at Homedepot are thin and uncomfortable. This cushion is fabulous. I feel no pressure on my pudendal nerve when I sit.

I don't plan on doing any marathon sitting, but it's good to know that I have the support I need when I do have to sit for extended periods of time in the car or elsewhere.

When I first visited my doctor about the last flare he said that it could have been attributed to the two and a half hours I spent between Baltimore and Philadelphia. I told him that I don't sit on my firezone and instead I cock my legs to one side and put all the pressure on my hip. He told me in that position I was hyper-extending the nerve, which could also cause a flare.

Man, sometimes it's impossible to keep my doctor and my coochie happy! He told me the best way to sit was with two feet on the floor. And of course, on a cushion.

Over the years, I've learned that it is in my best interest to heed his advice. I've been ignoring it for long enough and obviously my way isn't working.

Honestly, I'm so happy with this cushion, I might buy another one for my fiance's car and maybe my office.

BTW- Yes, that is a stick of deodorant on my dining room table...

Well Enough for a Waxjob

2008-12-15T16:20:00.003-05:00

For the first time in 2 months, I'm going into the salon and getting my nana waxed. I'm a month overdue. But around the time I normally schedule, my flare started. Five weeks later I'm doing better.

The clitoral pain seems to be under control. I still have it, but it's tolerable. Obviously having hot wax ripped off that area causes a flare, but it usually passes in a day. I'm willing to take the chance because I just hate pubes.

Having a smooth peach makes me feel more comfortable. My vag has so many potentially embarrassing problems, I like to at least keep the lawn well maintained. For some reason, it makes me hate that part a little less. It may not work well, but at least it looks pretty.

My Dad always tells me, "tis better to look good than be good." How true.

Why Couldn't It Be A Normal Problem?

2008-12-12T10:49:00.002-05:00

I just have to reiterate how absurd this whole situation is. I really thought I was going to see my doctor and he would say, "yup, the skin looks a little irritated. Use some Hydrocortisone for a few days and go back to your old shampoo."

Instead he tells me that my clit is fusing shut. Come on! Does that really happen to people?!?!?

The good news is, the steroid seems to be making a difference. I've used it for 3 nights and my clitoral pain has decreased. I'm sure digging out that mass of epithelial cells helped as well. I haven't started pulling things apart when I apply the ointment. I want to let it calm down first.

I think between my class being over and my clit being treated, I should have a pretty nice weekend. I hope you all do the same.

Thank you for your thoughts and support through this difficult flare.

All I Want for Christmas Is a Brand New V

2008-12-10T15:57:00.003-05:00

There always seems to be something going wrong in my netherlands. Here's the latest.

First, a disclaimer: I've grown almost too comfortable discussing lady bits, but this topic even makes me squirm. Please forgive the graphic content.

When I told my doctor that I was still having miserable clitoral pain he asked me if I had recently experienced any kind of straddling trauma. The answer is a definite no. My doctor decided that he needed to take a closer look.

Wearing magnifying specs, my doctor got an extreme closeup of my lady lump. He had to stretch it and spread it apart in every which way. At times it was so painful, I thought I was going to shoot right off the examining table.

He asked if I used any creams on that area and I told him no. I tried once and some of the product didn't dissolve and got stuck in my folds, causing me unbearable pain.

Just as I described, my doctor uncovered some material stuck in my hood. He put on the screen to show me what he was seeing. He then proceeded to squirt water to try and dislodge the matter, but to no avail. Finally he took a toothpick, a blue toothpick to be exact, and began gently scraping the material out of the fold.

The whole order was extremely uncomfortable, but being able to see what he was doing really helped. I knew what to expect and therefore I didn't jump when he made contact. Don't get me wrong, the view was gruesome. I told my doctor he could use that footage in a horror movie.

He was able to remove the material and he explained that it was a collection of skin that had sloughed off and gotten caught. He also told me that part of my clit was fusing together over a site of inflammation.

Apparently, when a collection of skins cells gets lodged in a clitoral fold it can cause inflammation and irritation. The skin then heals over the irritated area, trapping the material under the skin. What's worse is the skin now buried under a layer of fused skin is still sloughing off skin at the same rate. You can wind up with something similar to a cyst filled with sloughed skin matter. Gross!

Now the normal woman wouldn't even know this was transpiring just below her panties. But with my hypersensitivity from my pudendal neuralgia, the whole process is unbearable. Normal women only become aware of a problem much later when they lose sensitivity in their buttons.

At that point, my doctor performs a procedure to open up the fused folds and remove any trapped matter. It's a very minor procedure with only 2 or 3 sutures, but because of the area, patients must be in a very dark twilight sleep.

Patients who go through this procedure come out very happy on the other side because they can successfully flick their beans again.

I'm not a candidate for the surgery yet. My doctor gave me a steroid cream to help with inflammation. He also told me that when I apply it, I should try opening it up to try to reverse the fusion. If it doesn't get better in a few weeks, he told me to call and schedule the procedure.

I asked him what I could do for the pain in the interim and he told me not much. I can go up on the Neurontin or take opioids. Neither of those are appealing to me. I found this news pretty distressing.

When I left his office to go to the pharmacy, I started to feel nausious and panicky. The vision of my clit being raked with a toothpick coupled with the thought a surgical procedure made me feel sick and knowing that there's nothing I can do about the pain made me feel panicky, helpless and trapped in a body that continually fails me.

I bought myself a large Hershey's Symphony bar when I paid for my prescription and when I got home I took a Vicodin to try to take the edge off the searing pain in my clit from all the poking and prodding.

It was a rough night.