Happy Holiday Find

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

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?

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

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.

It Continues... Back to the Doctor

The vaginal flare has subsided, but the clitoral flare rages on. It's been more than three weeks! I have good days where it's pretty quiet, but they are few and far between. It's beginning to take a toll on me.

I still have intense feelings of rawness and burning. I'm taking every precaution to ensure that it's clean and dry, but that doesn't seem to be enough. I think my change in shampoo may have something to do with it. Perhaps it's causing some irritation.

I don't know for sure, so I'm headed back to my doctor's office tonight. I was scheduled for a wax job, but I thought it would be better to figure out what's wrong with my snatch before I subject it to more torture. This sucks!

Still Flared

My doctor told me that most likely the reason I'm still in pain is because the nerve has flared. In this case, the problem began in the skin, the pain signaling from the skin trauma caused the nerve to flare. He didn't find any evidence of yeast, but there was an overabundance of good bacteria, which could imply that there was yeast before I took the Diflucan.

He also found fissions, or tears in my clit, which could have been cause by trauma or just from the presence of yeast. I think the tears were cause by wearing pajama pants to bed. I would guess tossing around caused the seam to rub me in all the wrong places. Either way, the only thing I'm wearing to bed from now on is socks, maybe a T-shirt if it's cold.

My doctor wrote me a prescription for Climdese, which helps treat the bacteria levels in my cootie catcher. It's a cream that you insert. Fun stuff. And the best part is, as the goo is seeping out of me, it's getting lodged in the folds of my clit and causing me a tremendous amount of pain and discomfort. I've had to get in the bathtub 2 or 3 times a day to clear it out. It's so painful.

This is the first time I've had a pain flare in my clit and it is horrific. The increasing scope of my condition makes me worry that my nerve damage is getting worse. God knows it's not going to get better without surgical intervention, if then.

I really try to keep those worrysome, negative thoughts out of my head. It's completely out of my control. Besides, I have so much to be thankful for in my life.

You can't forget that life, in any state, is a gift. This is the time we have to enjoy. In the words of the late Joseph Campbell, "follow your bliss."

I Guess My Lady Bits Felt Left Out

Although my man popped the question almost a week ago, we have yet to consummate our engagement. Why? Well, the first three nights we were absolutely exhausted, plus we were staying at his parents house.

All of Monday I had all this burning pain. It felt like the skin in that area was stretched to the breaking point. I had no idea what was going on down there.

When I got home from class that night, I had a private moment with my mirror and discovered a swollen screaming red rash all over muzzle. I was horrified. I had no idea what would have caused it.

I went to sleep with the hydrocortezone and the next morning it had cleared up. But as Tuesday wore on I started to feel the familiar rawness of a yeast infection. I was really not happy about that.

My best guess is that my clam did not enjoy a night of sweating in panties and jeans at the concert. I think it might be something like adult diaper rash, minus the adult diaper. How disgusting am I?

I took a Diflucan that night. Wednesday morning things seemed to be better, but I noticed that my hot button was irritated. When I took a shower that night my clit really started to hurt. It felt like someone had sanded it, even the slightest contact was jarring.

I am officially in a flare. Everything down there burns. I don't know what's wrong. I changed shampoo and I know sometimes that can set things off. Perhaps it's just a nerve flare from the trauma of the last few days. I have no idea.

I had to take pain medication today to manage it. That's my last resort and I never take it during the day, but I'm miserable. My clit is still raw and my baby shute is on fire.

I hope this gets better soon. It's especially distressing because I don't know what's wrong. Over the years I've become pretty in tune with my pain. I can usually pin-point what started the pain, but not this time. I think it's almost entirely vulvodynia related. Something irritated my skin and I'm paying for it. I'm sure my pudendal nerve has flared from the pain signalling.

I'm seeing my doctor first thing in the morning. I hope he can help me.

A New Life with Vulvodynia

Warning: This has nothing to do with vulvodynia or pudendal neuralgia

Last Friday was the best night of my life. My boyfriend and I went to see my favorite musician, Butch Walker, at the North Star Bar in Philadelphia. It was the best crowd I've ever experienced. Everyone was quiet and respectful and everyone knew the words to every song, even the songs from his latest album, which was release three days earlier. We die-hard fans have our ways of hearing his music before it hits the streets.

My boyfriend isn't too well acquainted with Butch's music, but he knows a few songs. When the song "Don't Move" began playing, I reach out and grabbed his hand. I knew he knew that song because I put it in a mix I made for him 2 years ago when we fell in love. He pulled me close and as the chorus began, I looked down and he was holding a ring in front of me.

I was completely overcome with love and joy. I began shaking and tears ran down my cheeks. I absolutely could not believe what was happening. He slid the ring onto my finger as my hands shook.

"I hope you'll say yes," he said.

"You haven't asked me."

He paused and said, "will you be my wife?"

"Yes."

I couldn't take my eyes off him. I couldn't stop hugging him and smiling. After that moment, there was only one man in the room. He is the only person who could take my focus away from Butch Walker.

I really thought my boyfriend was incapable of romance, but I was wrong. He took my breath away. I was completely shocked. I couldn't believe he pulled it off. I had no idea it was coming. I never would have thought he would propose at the Butch concert. It was perfect, a dream come true.

I am so blessed to have him in my life. He has been my best friend and my biggest supporter in my daily struggles with vulvodynia and pudendal neuralgia. I am a very lucky woman and the best part is, I get to keep him.

I'm getting married!

Seasonal Depression or Something Else

I'm taking a break from vulvodynia and pudendal neuralgia blogging in order to share something else personal.

I'm having some trouble with sleep and anxiety. The last few weeks I've had bouts of insomnia and an elevated level of day-to-day anxiety. I know daylight savings time really threw me off, especially since I was out of time that weekend. The darkness that begins to creep over the skyline at 4:00pm is really getting me down. But despite of the lowered mood and the shift in time, I can't fall asleep.

This produces one nasty cycle: I have trouble initially falling asleep, then I worry I won't be able to fall asleep, my anxiety level increases, and then I can't sleep. You would think there was a pill for that, well there is, actually, there are a few, and nothing is working for me. I take a low dose Ambien, but it hasn't been able to get me to sleep. I have drugs for anxiety, but they haven't been able to take the edge off to help me fall asleep.

It's a mess. I'm seeing my psychiatrist on Monday to tweak my drugs, but until then I have feeling I'll be pretty tired.

On top of the anxiety produced by trying to go to sleep, I've been really anxious about school. I feel low and panicky when I think about having to go to class.

So this leads me to wonder, is this seasonal depression? I've always loved the fall, so that seems unlikely. Is it stress from the end of the semester? I'm in the home stretch, but the concepts in chemistry have become extremely complex. Could it simply be that the efficacy of my drugs have plateaued and I need to boost them? Maybe it's all of the above.

Whatever it is, it's taking a serious toll on me. I might go buy an over-the-counter sleep aid to get me through the rest of the week.

Traveling with PN & Vulvodynia

I'm sorry I haven't posted to the blog in a while. My life has been pretty hectic. I had a major exam two weeks ago and last weekend I visited Boston.

It was my first time in Bean Town and I absolutely loved it, but the travel was hard on my moose knuckle.

First of all we flew Air Tran and the seat was so hard, it felt like I was sitting on a wooden chair. I balled up my winter coat and sat on it, but that didn't make much of a difference. I contorted myself into a position where I wasn't putting pressure on anything sensitive and fell asleep.

From the airport we took a bus and then a train to a friends house. The public transportation in Boston is fabulous. It's convenient to get anywhere without ever getting into a car.

That would be great for anyone, unless you can't sit on hard surfaces. In hindsight, I should have brought my cushion. Although it never even occurred to me. Honestly, I think I would have been too embarrassed to lug it around.

I was there with my boyfriend and some of his closest and oldest friends. I didn't want them to think, "oh look, there's Nick's clippled girlfriend. What's wrong with her? Why is she carrying a cushion?"

Sometimes you want to keep your private business private. I don't like raising the eyebrows of his friends and family. I don't want to give them any reason to think that he shouldn't be with me. I hate being judged and condemned for something I can't help, especially because its something that doesn't impair my ability to be a strong and loving partner.

Don't get me wrong, it's human nature to judge and be concerned for the well-being of someone you love. But in my case, it's so difficult to explain. People may be curious, but as soon as you start using terms like "chronic pain" and "vagina," they want to run.

I'm still flared from my trip, but I'm managing. I had such a wonderful time. It was definitely worth the discomfort. But in December I'm flying Air Tran again and I'll definitely be bringing my cushion.

I'm Officially Coming Out of the Blogger Closet...

Hi, my name is Quinn and I have vulvodynia and pudendal neuralgia. (Sounds like an AA meeting)

As I've become more active in the online vulvodynia community, I've felt compelled to use my name and not an alias. This is who I am, this is what I live with and I shouldn't be ashamed.

I made the decision to use an alias because I thought my family would be embarassed if they knew I was sharing the woes of my cha cha with the entire world. Over the last year, I've become more open with my family. They all know what's going on down there and a number of family member have read my blog.

I think reading my blog has helped them understand me and what I've been through. The first 4 years were rough both physically and emotionally, but I couldn't talk to anyone about it because I was so ashamed. I didn't think anyone could understand. I thought I was completely alone.

I have a completely different life now. I'm well both physically and emotionally for the first time. The last real demon clouding my mind, annorexia, is in a state heibernation. I'm fortunate to have the love and support of my family.

My mom frequently asks me, "how's your part?" She hates the word vulvodynia because it sounds like vulva, but she like the name pudendal neuralgia, although, she can never remember it. Baby steps, right?

I'm Wearing Pants

After many months of flowy skirts and no undies, I've had to dig into my closet for a pair of pants.

It's chilly and blustery outside and I didn't want to be cold. I was freezing my toes off last night at school!

I'm still in some pain from my record/rule-breaking weekend, but the flare seems to be subsiding. As many of you well know, vulvodynia and pudendal neuralgia can make pants seem like torture. I've got a pretty good system: baggy pants, a belt and commando (no panties).

This is tolerable because I stand. As far as my cooty-catcher knows, I'm still in a skirt. There's no contact or pressure from the pants on my goods. Only problem is, I don't have propper footware to complement my outfit.

I bought Dansko's for my job, unfornately they're brown and my dress pants are black and I can't find any black dress socks.


I look like I got dressed in the dark! At least I'm not in any extra pain. I'm learning more and more that there are ways to lead a functional life, pants and all, while living with chronic pelvic pain. It may not be pretty at times, but it works.

The Vulvodynia Continues

I strongly believed that my pudendal neuralgia or never damage is a bigger problem than my vulvodynia, but I know better now.

I've gone to a lot of trouble to accommodate my never pain: I stand all day at work, I use the kneeling chair on occasion, I use a cushion in the car, I recline at home and avoid sitting. And for the most part, I've been doing well, certainly better than a year ago when I was in pain every day.

I use a compound for the vulvodynia at times, but sometimes it irritates my urethra, so my usage is sporadic.

My partner has been having some personal issues that have taken a very serious toll on our relationship. Last week was rough, but by Friday we had talked things through and we were back on track.

Makeup sex is the best part of a difficult time and let's just say that I was glowing on Friday night. Virtually no pain. Saturday, we needed the makeup some more, if you get my drift, but I wasn't physically ready.

I've always had the policy with my partner that I need at least a day off to recover, but I'd been doing so well with pain management and we were suddenly doing so well as a couple that I didn't want to stop making up.

I felt pain immediately and I thought it would diminish as we continued but it didn't. I was still in pain hours later. I realize now that by breaking my own rule, I started a flare. Two days later and I'm still in the same amount of pain.

I made a poor decision, but sometimes I just want to forget I have vulvodynia and live in the moment. I have to learn that there will be other moments and while the moment will pass quickly, the pain caused by not respecting my physical needs will last for days.

What's You Anti-Drug?

I'm sure you've all seen the ad campaign: What's Your Anti-Drug? The commercials show teens doing things that make them happy or challenge them and make them never want to try drugs. It's a little hoakie, but it stuck in my head.

Last night while I wasn't paying attention in class I posed the question to myself. Of course, in my case, the drugs are painkillers and narcotics legally prescribed by my physician.

I hate taking hardcore pain meds. I take them as a last resort or before going to bed in the homes of knocking out the pain signals. That might not be scientifically accurate, but it's helped me before.

I realized there are a number of things that I do to help reduce my pain or at least distract me from it.

-School is a big one. Even though those awful desks give me some grief, being so busy with school keeps me on track.

-Home improvements. When I hit a low, I usually pick myself up being doing something to improve my house. Even little things leave me so satisfied and content. Last weekend I got down on my hands and knees and scrubbed the bathroom floor. It looks great and it made me feel great. I may have inadvertently gotten high off the cleaning products, but I'm still going to count that as an anti-drug scenario.

-Being outside. Fall is my favorite time of year. You won't see bluer skies or prettier sunsets all year. The air is crisp and invigorating. I love being surrounded by nature. It makes me feel at peace and grateful for my life.

-A heavy movie. It doesn't even need to be even have to be a particularly good movie, as long as I find myself completely immersed in another world. Action, Fantasy, Thrillers, especially on the big screen. It's really nice to leave my life for a couple hours and be somewhere else.

-Lighting candles and opening the windows at night. This is something I used to do in my single days all the time. Now that I'm cohabitating, I don't have a lot of opportunities to light candles and relax. There isn't a lot of peace in my home. I've vowed to create a sanctuary for myself with candles, relaxation music and a fountain.

-A hot bath with lit candles. Can't get any better than that.

So, what's your anti-drug? What reduces or at least distracts you from your pain?

If you can't think of anything, you've got homework to do. Find something that beings you some peace and makes you happy. There's something out there for everyone. You just have to look.

No Online Support Group Meeting Tonight

I'm swamped with school work and I can't host a meeting this month. I'm very sorry for the inconvenience.

The next meeting will be Thursday October 16th.

Hope to see you there.

Things I Took For Granted Before Vulvodynia and Pudendal Neuralgia

-Sitting
-Walking
-Driving a Car
-Working at a Desk
-Seeing a Movie in the Theatre
-Wearing Pants, Especially Jeans
-Wearing Panties
-Going to the Bathroom

This is just a short list of mundane things that people do without thinking.

Living with vulvodynia and pudendal neuralgia, I have to take my vag into account when I do just about everything.

It's important to note that sex is not on this list because I never got to enjoy sex without pain. It was terribly painful from the first time, but now I'm thankful for every chance I have to enjoy sex with less pain.

US News and World Report

This morning when I went into the bathroom, I noticed that my boyfriend had left an article open for me to see. It was the cover story from the current issue of US News and World Report titled, Making the Most of the New Sexual Revolution. The final section of the article was dedicated to vulvodynia. I think that's fantastic!

The woman featured in the article had a story so similar to mine. It gave me a lot of comfort and hope. The word is getting out, ladies! The issue is on news stands now. Check it out.

Busting My Ass In School and Causing a Nerve Flare

I am literally busting my ass in school. I work full-time and this semester I'm taking two classes. I normally only take one. Given the circumstances, I have to sit in a classroom for 4 hours a night, 3 days a week. Only 2 days in and I'm starting to feel the pain. Vulvodynia and academia don't mix.

I've got a manageable setup in my office: I've got me kneeling chair and my standing desk. I can get through the day without too much discomfort. My pain increases over the course of the day, but by 5:30, I'm usually home and reclining to take the pressure off my nerve.

I no longer have that luxury. I leave work, get in my car, drive to class and then plant myself in a rigid desk. I can't usually contort myself to tolerate an uncomfortable seat for a small duration of time. But last night, there was no comfortable position.

By the time I came home, I was in bad shape. I'm going to have to start bringing a cushion to class. Hopefully that will be enough. I don't want to draw negative attention to myself, but I don't have a choice. I'm not going to sit back and cause myself unnecessary pain.

Last night I found myself feeling frustrated and discouraged. I realized how much my pudendal neuralgia and vulvodynia have progressed over the last 2 years. They're getting worse and I don't know if I have the ability to stop them.

I still believe I made the right decision to put off the pudendal nerve decompression surgery, but I know it's on the horizon. Maybe I should try another nerve block.

Follow Up on Second Vulvodynia Online Support Group Meeting

I was extremely fortunate to have the same two lovely ladies join me for the second vulvodynia online support group meeting. Once again, I learned a great deal from the chat.

Perhaps the most exciting part of the meeting was the sense of connection I felt. We're beginning to know each other a little bit and it makes it easier to discuss life and pain.

Thank you again to my participants.

Maybe next month we'll have a few more visitors.

Support Group Meeting Thursday at 8:00pm EST

I will be hosting an online support group meeting on Thursday August 21 at 8:00pm EST. To participate register a user name and type in the chatbox located on the right hand side of the screen.

Hope to see you there.

Wholy Moley: It's Pre-Cancer

My vulvodynia specialist called me last Friday and told me that he got the results of the biopsy and the mole was pre-cancer. If left untreated, it had the potential to become malignant. I'm surprised, and so is he.

The atypical cells extended all the way to the edge of the mole, so to ensure that he successfully removed everything, he must reopen the now healed incision and check. Hopefully he'll be able to do it in the office tomorrow. If not, I'll have to have the remaining tissue removed in the OR.

I really thought it was nothing. I thought I was being overly cautious, but apparently I was just being smart.

There are two lessons you can take away from this experience:

1) if you have a skin growth that worries you, have it assessed by a professional

2) it's not a bad idea to sneak a peak at your butt-hole once in a while

NOT Fun In the Summertime

I was scheduled to have my pudendal nerve decompression surgery on Monday; and my boyfriend had graciously taken three days off to take care of me. I decided a month ago to postpone the surgery, so we decided to take advantage of the time off and head to the beach.

I had a great time until the last day. I've managed to get through the summer almost entirely without underwear. It's been a pleasant stay-cation for my lady bits. But you can't go to the beach and the pool without your bathing suite, at least not in New Jersey, so my moose knuckle was tightly confined spandex for 4 days.

By the fourth day, my clit was throwing a fit. I was extremely uncomfortable and I had to cut my final day of beach time short because I was just miserable. To make matters worse, the I had spent 25 minutes on an elliptical machine the day before to work off some vacation pounds, causing my urethra to flare.

I was feeling pretty crabby, but after half a vicodan and a long soak in the tub, I started to feel a little better.

I've never had a problem wearing a bathing suite before, but pain is dynamic and ever evolving. I know now to limit my bikini time. It's frustrating, but by now I've grown all too accustomed to vaginal setbacks.

Pain in the Butt: Mole Removal

A week ago I went under the knife and had my poorly placed mole removed. I'm extremely fortunate to have to doctor that I do. This procedure was so routine to him, he had taken a mole off another woman's anus just 4 hours earlier that day!

Turns out my mole was on butt skin and not anal skin. My doctor said that aside from the size, it looked normal. In preparation for the removal I got a gigantic shot of lidocaine. It hurt so much it took my breath away. After that I had no pain, but I could feel all the pressure and pulling as he cut the mole out and then stitched me up.

The mole removal wasn't bad at all. I should get the biopsy results this week, but I'm not concerned. I did learn, however, that vulvar skin can be quite susceptible to melanoma. I was shocked. When I think skin cancer, I think of someone who spent too much time in the sun. There's a reason they call your privates "the place where the sun don't shine," but apparently that doesn't matter when it comes to skin cancer.

That's something to keep in mind. If you see an abnormal growth or discoloration in your lady canyon, have someone take a look. It could save your life.

From The Things Couldn't Get Any Worse Department...

Now this may shock you, but I make a point to get a Brazilian Bikini Wax every month. That probably sounds like sheer torture, but after doing it for 2 years, it's not so bad. And having a nicely maintained crab claw makes me feel less ashamed of that part. It may cause me a lot of problems, but at least it looks pretty.

After my first Brazilian, I got down on my hands and knees, spread my cheeks and snuck a peek. I wanted to see how thorough it really was. To my surprise, I discovered a freckle near my leather cheerio. I thought it was kinda sexy, like having a beauty mark. Cindy Crawford wishes she had this freckle!

Well two years have passed and that sexy little beauty mark has grown to be at least 10 times its original size. I'm sure most of you out there are pretty comfortable with a hand mirror by now. I was doing a routine check to see what was going wrong down there this week. While I was down there, I thought I'd take a look at my cute little freckle. It's not cute any more!

It's important to keep an eye on all your moles and marks. From afraidtoask.com, here's the ABCs of Mole Warning Signs:

Asymmetry
Asymmetry can be assessed by comparing one half of the growth to the other half to determine if the halves are equal in size. Unequal or asymmetric moles are suspicious.


Border
If the mole's border is irregular, notched, scalloped, or indistinct, it is more likely to be cancerous (or precancerous) and is thus suspicious.


Color
Variation of color (e.g., more than one color or shade) within a mole is a suspicious finding. Different shades of browns, blues, reds, whites, and blacks are all concerning.


Diameter
Any mole that has a diameter larger than a pencil's eraser in size (> 6 mm) should be considered suspicious.


Elevation
If a mole is elevated, or raised from of the skin, it should be considered suspicious.

I was concerned about my mole, but I didn't know who to contact about it. I called my dermatologist and asked his assistant if he would look at a mole about an inch from my anus. She said, "Hmm, I'm going to have to call you back about that one." Fortunately, my dermatologist was willing to look at it. Now this man looks at my face, the thought of him a few inches away from my chocolate starfish was troubling.

At his office, I undressed from the waist down and he used a paper sheet with a hole in it to maintain my modesty. His nurse was in the room. I was lying on my back and he pulled my cheeks apart and poked around for what felt like an eternity. Finally he said, "Get dressed and I'll take to you in the office."

Great... He told me that I had an atypical mole that needed to be removed and biopsied. Unfortunately, he didn't feel comfortable removing it himself because of its proximity to my cornhole. He told me to try my gynocologist or a surgeon. My vulvodynia specialist happens to be both.

My dermatologist wished me luck and told me to tell him how it turned out. He said, "I have to tell you, this is the first time in 40 years I've ever seen something like that."

"Well I'm happy to be your first," I said.

"No you're not." We both had a good laugh.

That brings me to today. This evening, my vulvodynia doctor is going to shave the mole off my big brown eye.

I'm afraid to even ask what else could go wrong down there!

Vulvodynia and Your Period: Not a Pleasant Combination

Just Another Bitch In Heat

There is no woman alive who enjoys having her period, but for someone suffering from vulvodynia, it can be much worse. It's difficult to find sanitary products that don't cause irritation and pain; and you have to use something.

There are plenty of days when I go without panties. It's much more comfortable, but I don't have that option when Aunt Flow pays me a visit. Obviously, panties alone are not enough keep my pink from turning red. Gross, I know.

I used to use Always with Wings, and long before I knew the pain of vulvodynia, my skin would get so irritated. I would break out into rashes, but I thought that was the way it had to be.

I started using tampons young and I learned quickly that Tampax is the most uncomfortable female product on the market. If there isn't enough fluid to keep a Tampax tampon moist, it rubs against the inside of you like sand paper. The worst part is trying to take a dry tampon out. It's like intentionally giving yourself ropeburn.

OB's with applicator are the way to go, but their not available everywhere, and frankly, I want an applicator. I don't want to walk out of the stall in my office bathroom and look like I just left a crime scene!

As my vulvodynia got worse, my choices grew more and more limited. My skin would become inflamed I used a tampon for too long. But if I just used pads, the excessive moisture would cause me to develope a yeast infection.

What could be better than closing out your period with a raging yeast infection?

A few months back, when I was searching the web for information on vulvodynia, I stumbled across Glad Rags. At first, I thought the website was a joke. The name is a little vulgar, even for me. I decided to give the product a try and I've been pleased. Glad Rags are reusable cotton pads that allow your skin to breathe. They're a little bulky, but so much easier on my hatchet wound. On their website, they even have a testimonial section from women with vulvodynia.

Now, Glad Rags are my first choice. But, if I'm expelling a great deal of baby juice, I use a tampon. While the tampon is more painful, and there's a greater chance I'm going to cause a flare, I just find the whole experience so disgusting that I'd rather deal with some pain than feel like I've sprung a leak.

It's never pleasant to have your period, especially with vulvdoynia, but I've found a way to make it slightly less miserable.

Followup on First Vulvodynia Online Support Group Meeting

Last Thursday night, I held the first vulvodynia online support group and I think it was a success.  I had two lovely ladies join me to discuss life with vulvodynia and I learned a tremendous amount from them.  

I felt a great sense of camaraderie.  One woman said whenever she wore a skirt there was always a big ball of panties in her pocket!  That's me every day at work.  I arrive at the office in panties, but I generally take them off during the day and keep them in my pocket or in my bag.  I thought that was hilarious.  It's a silly little moment that no one else could appreciate.  And it's certainly not a moment that I thought anyone else had experienced.

I think the true purpose of a support group is to make one feel some sense of normalcy, no matter how fleeting.  

I want to thank the two women who joined me last Thursday.  I hope our time together brought them some comfort and maybe a smile.  I am extremely grateful.

Reminder: Vulvodynia Online Support Group Meeting Tonight

Tonight at 8:00 EST, I will be hosting the first Life with Vulvodynia Online Support Group Meeting.  

Mission

 

The mission of the Life with Vulvodynia Online Support Group is to offer women the opportunity to discuss their condition with fellow patients in a non-threatening environment.  This support group is designed to encourage Hope, Education & Communication.

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 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 insights.  If you don't have a comment, you can say, "Pass."

-Only after everyone has spoken will the floor be opened to discussion.  

-There will be a limited time for each topic

-The meeting will last one hour

Vulvodynia Pain Management: Putting Off the Pudendal Nerve Surgery

I've been grappling with whether or not to go through with my surgery for the last month.  I was scheduled to go under the knife in August, so I had to decide quickly.  

I had been in a terrible flare for nearly 2 months, and surgery seemed like my only hope.  But the flare finally subsided 2 weeks ago.  Since then, I've lost that sense of urgency.  I began really thinking about what surgery would entail and the possible outcomes:  

-I could get better after the surgery

-I could stay the same

-I could get worse

The question was: am I ready to put myself through such and ordeal for those results?  Worse than that, there's nothing after surgery.  It's truly the last resort.  I'm not ready to explore my last resort.  As bad as things can be, I'm terrified that they could become worse.  You can't undo surgery. 

Right now, I have a lot of options.  I can increase medication, change medication, increase compound use, change compounds, and most importantly, I can change my routine to truly accommodate my physical needs.  

I've fought long and hard to have the kneeling chair and the height adjustable work station, but I don't always use them.  Some days I'm tired and I just want to slouch in a normal chair and limp my way through a work day.  By the time I leave work, the consequences of that decision are evident and often the flare I've created lasts for days.  

Obviously, I'm not doing enough personally to avoid pain.  I need to do more.  I'm now treating my lady parts like fine china.  No more sitting in normal chairs at work.  I stand most of the day and when I get tired or I really have to concentrate on computer work, I'll use the kneeling chair.  I've been able to avoid a long-lasting.  I'm still in pain for portions of the day, but, thank God, it's passing.  

At home, I recline as often as possible.  I'm very conscious of how I arrange myself on any piece of furniture.  I also have to be careful sitting down and getting up.  

The other night I was in a hurry to get in the car and my butt hit that seat too hard at just the right angle.  Pain started immediately and there was nothing I could do to reduce it.  On the ride home, I was worried I had started something terrible.  But I reclined for the rest of the night and by the next morning my pain level was back to zero.  

I'm learning to really listen to my body.  As soon as I start to feel uncomfortable, I know that something has to change.  I've been relying on my doctor and medication to make me better, but I haven't done enough personally to make myself better.  

When I come to the point where I can no longer avoid the pain, I will know that it is time for surgery.  But while it is in my hands, I'm going to do everything in my power to manage my own pain.   

Guest Blogging on Vulvodynia

Last week an article I wrote was published on the Body Chronic site.  The title is "Chronic Pain in the Office: How to Work Through It." 

In the article, I summarize my experience getting accommodations at work for my chronic pain.  I've written about this issue a number of times here, but this article brings the whole story together.  

If you haven't seen it yet, please check it out.

First Online Support Group Meeting: Thursday July 17, 2008

I have received a wonderful response from women interested in participating in an online support group, so I'm thrilled to announce the first meeting will be Thursday July 17, 2008 at 8:00pm (EST).  

Please join me and other women to share your experiences and methods for coping.  The first meeting will be a chance for women to introduce themselves and explain a little about your condition.  I'll post an agenda as we get closer to that date.  

It's very easy to participate from anywhere.  All you need to do is type a name in the name field and post your comments.  The chat box should refresh automatically.  

Thank you so much for your interest.  I look forward to chatting with you all soon.

Online Support Group for Vulvodynia and Pudendal Neuralgia

I've been trying to drum up enough interest in a local support group, but the general response has been in favor of online meetings: saves money on gas and that way I don't have to buy any cookies for everyone.  

The good news is, there's no reason why this online support group can't include everyone.  I added a chat feature on the right column of my blog to facilitate online meetings.  It's not going to be as natural as it would be in person, but at least we can start building a stronger support network.  

If you're interested in participating in an online support group, please add a comment to this post and let me know.  

Gardasil: Not Just for Pre-Teens

During my visit to the women's clinic a few months back, I asked the Nurse Practitioner about Gardasil, the vaccine that claims to protect girls against cancer-causing types of HPV.  She thought it probably wasn't as miraculous as it appeared to be, considering there are about 100 strains of HPV, but it does prevent infection from the two major cancer-causing strains HPV-16 and HPV-18.  

Then she told me something I found very exciting: women up to the age of 26 can receive the vaccine.  I just happened to be 25.  Fantastic!  I did some research and called my doctor to arrange for my first injection.  You have to receive a series of 3 shots over the course of 6 months.  I just had my second shot two days ago.  

In my web research, I also learned that Gardasil also protects against the two strains of HPV that cause genital warts.  At this point, it's unclear how long the vaccine is effective.  Some reports claim at least 4 years, others claim only 2.  It will take time to get a survey of the efficacy over time.  I personally hope it's forever.  

I'm currently in a committed, long-term relationship, but I jumped at the chance to get additional protection.  You never know when your relationship will go south and you never know, for sure, where someone else has been.  

I consider myself very fortunate to not have to worry about STDs at this time in my life.  We have both been thoroughly checked and, thankfully, we are both clean.  I have chosen to only use the pill as my form of contraceptive.  

All condoms cause me a great deal of added pain and burning.  I've try latex, polyurethane, and even natural condoms made from sheep intestines.  Those are disgusting!  They smell like formaldehyde.  It was like bestiality and necrophellia all at once!  As soon as I opened it and the smell hit me, that thing went right in the trash.  I will never touch lamb skin condoms again.       

But, I digress.  The point is, if you're under the age of 26, you should do some research on Gardasil and see if the vaccine is right for you.  I think you can never be too safe from STDs.  

If you ask me, my squirrel's nest has more than enough problems without cancer and warts.  

CT-Guided Pudendal Nerve Block: The Jury Is Still Out

I've been very reluctant to post about my CT-guided pudendal nerve block because I haven't seen any positive change.  I actually think I've had a complication or two.  

I don't want to frighten anyone away from considering this procedure.  There were a lot of factors that have tainted the results for me.  

I've had a lot of pain in my left butt cheek, which at times radiates down my left leg.  I feel badly bruised in my left knee, the top of my left foot and my left heel.  Very strange.  It hasn't been constant and it appears to be dissipating.  Thank God.  

In the wake of my yeast infection, my area has been on fire!  I wasn't sure whether it was a nerve flare or if the skin was actually inflamed.  After ignoring it and not sitting at all for a few days it got no better.  There was more of a sharp itch to the burning than my usual pain, so I tried a course of hydrocortisone suppositories.  It was definitely a skin issue and that's finally clearing up as well.  I'm glad I had those lying around.  

My doctor had prescribed them for me a few months back and I hadn't used them.  Boy, am I glad I kept them!  I was going crazy.  

During this time of heightened pain, I've noticed that even standing makes me flare.  It makes sense.  If you stand for too long in one place, blood starts seep out of the capillaries in your lower extremities.   This can lead to swelling and even fainting.  My theory is that there is also a fluid buildup in my moose knuckle.  

I guess I just need to find a balance between sitting and standing at my job.  What I really need is to be able to recline at times, but that's not an option.  

Anatomy of a Yeast Infection

I'm currently taking prerequisite classes in order to get into nursing school.  I've banged out the basic fundamentals, Anatomy & Physiology I & II and Microbiology.  I love what I'm studying and I now have a much more detailed understanding of some of my problems.  

As you know, lately I've been plagued by yeast infections.  They are just the worst.  When you're already so fragile down there, it's the most unwanted visitor.  Unfortunately, I know why Mr. Yeast took up residence in my snapdragon.  

I've been under a lot of stress, from my job, from my loved ones, from my body and one of the best parts about being a woman is your body really wears the signs of stress.  About 2 months ago, I started getting this horrible, painful, cystic acne.  (That REALLY helped with my stress!)  I tried being more active in my skin care routine, but I could not get it to clear up on my own.

I made an appointment with my dermatologist and he reminded me that the last time I came in with a serious case of pizza face was 2 years ago when I switched jobs and bought a new home.  Clearly, stress related.  My doctor decided to put me on the same antibiotic he had given me then.  

Here is the first problem: there are many possible microorganisms that are colonizing my face and causing the breakout.  The best treatment would be an antibiotic with a small range, targeting the specific cause of the acne and leaving other naturally occurring bacteria alone.  That's really not done in dermatology.  The common practice is to give the patient an antibiotic with a wide range.  Hopefully, this medication will wipe out the problem.  Meanwhile, because the drug has a wide range, it also kills off other important naturally occurring bacteria in your body.  

That's how we come to yeast.  Everyone has yeast in their snizes all the time, but your body keeps it under control.  There is a daily struggle between good bacteria that protects your body and bad bacteria that can be potentially harmful.  A course of antibiotics can wipe out the good bacteria in your honey pot.  Yeast is an opportunistic bacteria.  It seizes the opportunity when the bodies defenses are low and multiplies like there's no tomorrow.  

With a more specific antibiotic, this problem may not occur.  There are also prescription medications that can be taken in conjunction with a course of antibiotics like Nistatin or even Diflucan every 3 days for full duration of the medication.  Yogurt and Acidophilus can help too.  

I thought after the first treatment of Diflucan, I would be clear, but just a few days later the yeast infection I had was so much worse.  I strongly advise asking any doctor that prescribes you antibiotics to ask for a medication to protect your body during the course of treatment.   

Pain in the Ass: CT-Guided Pudendal Nerve Block

On Wednesday I had a CT-guided pudendal nerve block.  I hadn't anticipated it would be such an ordeal.  2 days before the appointment I received a call from the office saying that I had to come over an hour before the procedure, I couldn't eat or drink after 6:00 am that day.  I'm under a ridiculous amount of stress at work and unfortunately, I have my fair share at home as well.  I began to have some misgivings.

My mom was kind enough to go with me for the block.  I had to get completely undressed and wear gown.  I got an IV on the top of my left hand.  I was hungry, but cool as a cucumber.  One of the nurses even said, "I've never seen a woman this calm before this procedure!"  

I guess she jinxed me.  I finally got to meet the doctor who was performing the block.  He was very nice, but I think I got a little more information than I needed.  He told me that I needed to be awake enough to tell him if he punctured the nerve.  

That sent me into a bit of a panic.  I was all ready to be knocked out.  I thought all I had to do was lie there and look pretty.  I didn't want to be awake and in pain!  What if he did puncture the nerve!?!  What if this little procedure only made me worse?!?  

I started to feel hot and nauseous.  My mom got one of the nurses and I told her that I didn't want to do it, that I had changed my mind.  She was very surprised.  I was no longer her super cool patient.  I was a hot mess.  I was ready to rip the IV out of my hand myself.  

My mom suggested that I speak to the doctor and see if he could put my mind at ease.  I have to say, everyone on staff that day was just wonderful.  They were patient, understanding and kind.  The doctor and the nurse administering the anesthesia assured me that the risks were minimal and I would be well cared for.  

I decided to go for it.  I had to lie on my stomach with my arms stretched out in front of me.  My ass as in a tube for the CT.  Once they had everything lined up, I was given a local numbing injection in each butt cheek.  It hurt.  Then the big needle was placed on the left side.  "OW!"  Then another big needle was placed on the right side.  "OW!"  I'm not gonna lie.  It hurt.  Those needles were long!

After that second "ow" I was out.  I woke up feeling very happy and very relaxed some time later.  That was a wonderful sleep.  I felt so relieved about everything when I woke up.  Apparently, every time I said "ow" the nurse gave me another dose of twilight.  Good deal!  

I'm not nearly as numb as I have been with the previous nerve blocks.  Unfortunately, I have another raging yeast infection from a course of antibiotics.  And let me tell you, I can feel that!  I wish I couldn't.  

My butt is still very sore from the injections.  I feel like I got a tetanus shot in both cheeks.  

The steroid in the injection is not supposed to take effect for about a week, so I'll keep you posted on if I see some improvement.  I really need to nix this yeast infection first.  It's completely tainting my results and ruining my day!

I have a followup with my doctor some time in the next two weeks where we'll discuss surgery.   The CT-guided nerve block is supposed to be a good indicator of whether or not you should have surgery because it is so much more accurate.  The needle is in the potentially compressed canal.  

Hopefully, I'll have a clear indication of where to go from here.    

The Anatomy of a Pudendal Nerve Flare

I finally got the replacement part for my kneeling chair and not a moment too soon.  I'm in bad shape.  

Last Thursday night I got injured doing my favorite activity in the world.  It's amazing how the slightest shift in position can be the difference between pleasure and days of pain.  Essentially, my partner came down and scraped the front of my snooch a couple times.  Now everything around the opening of my urethra (sorry, I haven't found a better term for that) feels inflamed. 

The next day when I became aware of the extent of the injury, I found myself thinking, "Ha, what would a pudendal nerve decompression surgery do for this?  Nothing!"  

Oh, how short-sighted we can be...

The initial trauma sent pain signals through my pudendal nerve to my brain.  Those pain signals caused the nerve to flare.  It was only a minor scrape.  I have no doubt that it has healed by now.  The flare is drastically worse than the original injury.  At this point, the only source of relief is lying on my back.  I can't even stand without pain.  

I have my first CT-guided pudendal nerve block next Wednesday.  At this rate, I should definitely be able to test of efficacy of that procedure.

The results should also verify if the decompression surgery is right for me.     

   

Height Adjustable Workstation and New Questions

I gathered up my nerve and asked my boss if he would allow the purchase of a height adjustable workstation.  Although somewhat reluctant, he agreed because the price was reasonable.  

I am so relieved.  I didn't want to pay for it and I didn't want to fight for it.  And now it's here!

I've been using it for 2 days.  It's not the best.  It's wobbly and small, but it's better than a stack of boxes.  It will also be a better match for the kneeling chair, whenever I get the correct part.  

I've taken a number of professional risks by being up front about my condition.  But because I did, I'm getting the accommodations that I need.  I'm extremely fortunate to work for people who are understanding.  I don't think most offices would tolerate this issue.  

With the changes that I've made to my workspace, I've begun to think about delaying surgery.  Maybe if I can avoid the primary source of my pain, I can also avoid the need to go under the knife.  

I'm really not sure what to do.  I've been so hot to get sliced for so long, but now I'm starting to worry about potential complications.  

What if the surgery actually makes my condition worse?  

What would I do then?  

Surgery is the last resort.  

That's a really scary thought.      

Vulvodynia with a Side of Teeth

Before I had any proper diagnosis, before I ever heard the word, "vulvodynia," I said my vagina was ANGRY.  It became a separate entity from myself.  It was a hateful, torturous creature that caused me debilitating pain.  

I always felt like my vagina was a monster, hideous and cruel.  I was continually victimized by it's wrath.  My therapist, at the time, told me I talked about my vagina like it was a thing in other room and not a part of my own body.  

After months of anticipation, I saw a movie that embraces the monster that lurks between our thighs.  Teeth is the story of a girl who discovers that her vagina can serve as a weapon.  She has been blessed with a legendary vagina dentata, toothed vagina.  The protagonist is transformed from a woman ashamed of her body to one who is empowered.  

Teeth is an over-the-top horror/comedy that is not for the faint of heart.  There's a decent amount of gore.  I'm sure you can imagine who/what falls victim to her special fangs...    

Someone Pilfered My Hope

What are the chances?  After my ergonomic evaluation, the gentleman who met with me found an adjustable workstation that appeared to be abandoned in the hospital.  He found out the name of the doctor that owned it and asked if it was available.  

I've been waiting since Thursday to learn if I could have it.  This morning I got the call that I could pick it up and take it to my office.  The doctor labeled the desk with the name of my evaluator.  We planned to meet at 2:30 today to roll it back to my office.  

By the time I got to the desk, someone had removed the drawers and the adjustable neck for the computer monitor.  It was there in one piece this morning and now it's useless.  

I called the company that makes the desk and asked if they had replacement parts.  They do, but they stopped making the desk I have.  There is a part they could work, but it would cost over $270!  That's not including the part I would need to order from Mac in order to suspend my computer from the arm.  (it's only designed for flat screen monitors)

For that price, I may as well get a new workstation that better fits the space I have.  

I was so happy and now I'm crushed.  I guess it wasn't meant to be.  Hopefully something else will work out. 

Ergonomic Evaluation for Vulvodynia

My situation at the office has been miserable and unprofessional for months.  I've been standing most of the time, but my desk is not designed for the height, so I have my computer on boxes of envelopes.  While I'm reducing trauma to my lady bits, I'm hurting just about everything else.

I decided to reach out to my company and see if any improvements could be made to my workstation.  The gentleman who made the assessment was very compassionate.  I spoke to him on the phone first and tried to explain my condition.  

"I have pudendal nerve damage which makes it very painful to sit."   

"Do you have pain in your lower back?"

"It's lower than that..."

"Is it in your tailbone?"

"No...  It's even lower..."  I didn't feel comfortable saying, "no sir, it's my vagina.  The pain is in my vagina."  Call me crazy, but I think you need to establish quite a rapport before you start dropping the V-bomb.  

This man spent his lunch break reading up on pudendal nerve damage.  He even stumbled upon pudendal.info.  I was very impressed that he took the time to understand.    

I haven't received the evaluation yet, but I got a few great suggestions.  There is a height adjustable computer stand that would be a major improvement.  The only problem is, my department is expected to fund any improvements.  I foolishly thought that the institution would.  I don't want to be a problem employee.  I don't want to give my bosses any reason to think twice about keeping me around.  

Now obviously they can't fire me for having a disability, but it's apparently very easy to circumvent the system.  I NEED this job.  So I may not be able to do anything with my evaluation.  

I could always buy the equipment myself and bring it in to the office.  Unfortunately, the cheapest workstation I can find is $380.  I already spent nearly $300 on the kneeling chair.  The gentleman who came to my office said that my department should at least reimburse me for the chair.  I've already discussed it with my boss and he doesn't want to pay for it.  That's actually how I wound up getting the ergonomic evaluation.     

I Broke My Kneeling Chair

Here I am feeling bad about my weight.  I reach for my purse on the floor.  And then crunch!  

The right side of the kneeling part broke.  Ouch, my pride...

I called the company that made the chair and they are sending me a replacement part.  Hopefully, this one can handle me.  

I've been standing for 2 weeks now.

But two days ago, I really had to concentrate, so I sat at my desk for about 3 hours.  I flared, but like an idiot, I sat again the next day.  Now I'm in a lot of pain and it's entirely my fault.  

At times like this, I wish I could work from home.  

The Incredible Shrinking...ME

I took a tip from The Body Chronic and made the switch from Lyrica to Neurontin.  What a difference! ! !  

I started gradually putting on weight last January, but I just attributed it to being happy and in love.  I was finally enjoying life for the first time and one of the great pleasures in life is food.  I've always been on the smaller side and my weight has been the same for years.  

It didn't take long for me to start feeling uncomfortable and self-conscious.  My clothes stopped fitting.  But I told myself I was just filling out.  I focused on my much larger boobs.  They were fun.  I got to feel curvy and almost busty.  I bought sexy new bras and felt like a bombshell.  

The problem was, I kept getting bigger.  

In November, I started going to the gym roughly three times a week with my boyfriend.  I started curbing my dessert habit, but I saw no change.  

In December, my family went on vacation to celebrate my father's 70th birthday.  I had to wear bathing suites and tank tops.  No matter what I wore, I couldn't get comfortable.  There was one night I had to wear one of my boyfriend's T-shirts just to hide my body.  

Then I saw the pictures from the trip.  I was completely unrecognizable.  I had never been that big.  I was truly overweight.  

I had never had trouble losing weight before and I couldn't understand why it had become impossible.  Then I read one of posts on The Body Chronic about her troubles with Lyrica and weigh-gain.  She recommended Neurontin as an alternative.  

Suddenly, it all started to click.  Maybe Lyrica was my problem.  My doctor wasn't a big fan of Neurontin, but he said he would let me give it a try.

I made the switch two months ago and the results are dramatic.  I've really slimmed down.  I haven't lost that much weight, but I'm much smaller.  

I can't attribute it all to Neurontin.  I've been working hard at the gym for 4 months now.  The muscle definition is all me.  

I think Lyrica is a more effective pain management medication, but the side effects made it a bad match for me.  I really can't sit at my desk at all now.  I got lazy and sat for maybe two hours yesterday and  I'm flared now.  

I had to make a sacrifice fat or pain.  I chose pain because there are many ways I can avoid pain, but there was nothing I could do to avoid the fat. 

The Other End of the Paper Sheet

After living with vulvodynia for 6 years, I decided that I wanted to become a nurse and help other women suffering from the same affliction. Well, at least that's what I thought I wanted to do...

I spent the day at a women's clinic shadowing a Women's Health Nurse Practitioner. She was incredible with her patients. She kept the atmosphere relaxed and casual. She made her patients feel as comfortable as possible given the circumstances.

I found myself feeling pretty uncomfortable, though. I saw my first cervix and several more. I watched the NP perform pap and STD tests. She told me to stand right behind her, so I saw everything.

I gotta tell ya, it was worse for me to be on that side of the paper sheet! I didn't think that could be possible, but trust me, it was!

In all seriousness, I realized that I have a lot of issues with the vagina. I have hated mine for many years. Having to look at so many other babymakers brought back all my shame and distain. I couldn't sleep that night because I couldn't get those images out of my head. I felt disgusting, like I had seen something I wasn't supposed to see.

Hopefully, the shock will wear off over time...

I Can't Even Stand the Word

I was watching a health documentary over the weekend on the nervous system.  Naturally, the topic of pain was addressed.  I couldn't handle hearing about how pain can be beneficial and how pain can be turned off in times of extreme trauma.  My pain doesn't turn off.  My pain isn't beneficial.  

Every time I heard the word pain, I grew more and more agitated.  I eventually had to change the channel.  I realized then how much I hated the word pain.  I resent that word for what it connotes in my own life.  

In case you haven't noticed, I make a point to find funny words to substitute for vagina.  That's another word I don't particularly like.  The substitutions add some much needed levity to the topic of vulvodynia.  Perhaps it's time for me to find some better words for pain.  I went to thesaurus.com and couldn't find anything better.

Frankly, a lot of those words seem even worse than pain: agony, anguish, torment...  

Ultimately, I realized what I really wanted was to have vulvodynia without pain.  But no matter what word I use, silly or serious, at the end of the entry, I'm still in pain.       

Women Aren't Supposed to Sweat... Especially Not There...

I had about 5 good days. That's remarkable. It's been rough lately. Sandwiching those 5 days are two different yeast infections.

The first yeast infection began the day after I spent 30 minutes on the elliptical machine and 30 minutes weight training. By the following afternoon I felt like I had a yeast infection. It took me a little while to figure out the cause, but I'm fairly confident that it was the extensive (at least for me) workout.

This is an embarrassing topic, even for me, but I think my sweaty hatchet wound caused the yeast infection. I don't normally have a problem with lady sweat. Except in the summer, but who doesn't then? I also haven't been in the habit of working out EVER, so this is pretty new to me.

My suspicions were confirmed a week later when I developed what appeared to be another yeast infection after dancing for 3 hours straight at a wedding. My baby cannon got ridiculously sweaty that night.

I know, this is gross. What can I say? It's a topic I need to address.

So now, I'm a mere 10 days away from a tropical vacation and I need to stay fit. I want to go back to the gym, but I'm worried about making this latest yeast infection, that developed yesterday, worse. I certainly don't want to be flared, but I don't want to undo all my hard work to get in shape.

I've been trying to find something that could help to keep my kitty dry. I don't want to use anything with chemicals because most likely I would end up with a flaming honey pot. I'm going to try powder first. I have baby powder and I also found a Vagisil powder. Hopefully one of those will do the trick without making anything worse.

Yeast Infections and New Directions

Well being sick was therapeutic, but taking antibiotics wasn't.  I wound up with a yeast infection towards in the last few days I was on amoxicillin.  That naturally caused a flare, which put a damper on Valentine's Day activities.  

I saw my doctor for a refill appointment last week and told him that I wanted to start a support group in the area.  He told me that he would hand out brochures and fliers for me.  So far I haven't heard from anyone, but it's only been a few days.  I hope I can generate enough interest.  

I think blogging and forums are so helpful, I can only imagine a support group would be even better.  I'm learning so much from other women's stories online and I want to share it with others.  Living with vulvodynia can make you feel so isolated and ashamed.  Having a tangible network of other women who understand could make such a difference.      

I finally dragged my kneeling chair to work and it helps.  I still have pain, but it's considerably better than sitting in a conventional desk chair.  Being lazy on Tuesday, I accidently tested the difference.  I had a lot of work and I needed to be incredibly focused.  I thought being comfortable would help, so I sat in a large desk chair.  After 3 hours I was so flared; it was awful.  I was planning to go to the gym and run errands after work, but all I could do was go home and recline to try and quite my pudendal nerve.  

The following day, I only used the kneeling chair.  I didn't go home in nearly as much pain.  

God, I don't know what happened to me in the last few months.  I used to go days and days without pain.  Now I'm lucky if I get a few hours.  It sucks.  I can't think of a better way to explain it.  

But I'm soldiering on.  I'm putting a lot of my energy into my class and trying to remain proactive in my care.  I'm thinking about switching from Lyrica to Neurontin.  There are considerably fewer side effects on Neurontin and on Lyrica, I have to deal with virtually ALL the side effects.  

My memory is terrible because of Lyrica.  I'm in the most important relationship of my life and there is so much I just can't remember from the past year.  It's embarrassing.  I feel guilty, but I can't help it.  Before Lyrica, I had a remarkable memory.  I could recreate every moment to the smallest detail.  Now it's a blur.  I've been in this drug-induced fog since January 2007.  Don't get me wrong.  I need the drugs.  They help make life livable, but I think I can do better.  At least I hope I can.  

Weight gain has also been an issue.  I've probably gained 30 pounds in the last year.  I've always been on the slight side and 30 pounds is a lot.  The weight completely changed my figure.  While I liked having boobs for the first time in my life, I didn't like the rest of it at all.  

I've been going to the gym for 4 months and that's helped, but I'd like to lose a few more pounds.  Maybe changing drugs will make that a little easier.  

Making Accommodations

As I struggled with the last flare, I decided to take action. I ordered a new cushion and a kneeling chair to help keep me off me hot spot.

The cushion is from the Interstitial Cystitis Network. I learned of this product from the forum. I’ve tried cushions before with no relief. But people on the forum gave very positive reviews, so I gave it a shot. I use it in the car and it’s helping. I'm thinking about purchasing a second one for my boyfriend's car. I would definitely recommend the cushion.

I haven’t put the cushion through the rigors of protecting my butt during a full day at day. I don’t know how much help it would be, because ultimately I need to find a way to sit differently.

My mother suggested a kneeling chair. I called my doctor’s office to see if he recommended them to his patients, but his receptionist said she had never heard of them. Then I checked the forum. Again, people provided a positive response to the chair.

Unlike the cushion, with is less than $27, these chairs can be expensive. I needed to be sure it was worth the cost. After some searching, I found a back store that carried one model of the kneeling chair.

It was a perfect day to test it, because my gash were on fire. I arranged myself in the chair (it’s a little awkward) and found that the pain level was that of standing. I had just been sitting in the car (pre-cushion) and I was very uncomfortable. The kneeling chair really doesn’t allow you to put as much weight on your sniz.

I decided after sitting or kneeling in the chair for less than 5 minutes, I decided to give it a try. I ordered one online because it was cheaper than buying it in the store.

The kneeling chair hasn’t made its way to my office yet, because I park far away and I didn’t want to roll it or carry it up the street. It’s very light, but I guess that shouldn’t be a surprise considering there isn’t much to it.

I'll let you know if it can pass the test of time.

Sometimes Being Sick Is the Best Medicine

I think I got myself in trouble for using the word “worst” in a previous entry. Pain is dynamic and scales are relative. What was worst then is peanuts now.

I strongly believe that the last round of injections caused a nasty flare. In my attempt to avoid the word worst, persistent and hopeless are two good words that come to mind. I couldn’t sit for half an hour without searing pain. I got desperate and emotional.

Honestly, the greatest blessing this past week was getting really sick. I felt horrible. Sore throat, fever, headache, dizziness and complete exhaustion. I got permission to work from home on Wednesday. Like a good patient, I stayed in bed all day. Subsequently, I had no pain for an entire day. Good start.

On Thursday, I stood almost the entire day. Some pain. Less burning. I still felt sick as a dog! Friday, I wasn’t strong enough to stand. I did everything I needed to do for the day and got permission to leave early. I got right back in bed. Again, less pain.

Meanwhile, I was getting worse instead of better. I had a blinding headache for 8 days. I was so weak, I got winded walking from my car to the house and I had to rest for a long time after completing simple tasks. My mother forced me to go to an urgent care center. There I was told that I had sinusitis. A doctor gave me antibiotics and a note excusing me from work on Monday.

I am feeling so much better. Modern medicine is incredible. I started to make a major comeback in a day and a half once I began my course of antibiotics.

Thanks to my sinus infection, I was able to rest and stay off my pudendal nerve. It was enough time to quiet a raging flare. I feel very fortunate for the time I had to recover. I thought I wasn’t going to bounce back from that flare. I read that if not done precisely, a nerve block injection could cause irreparable damage to the nerve.

I thought I was ruined.

Honoring a Pioneer of Physical Therapy

On January 28, 2006 the world of physical therapy lost one of its most influential pioneers. Florence Peterson Kendall championed for physical therapy in the 1930s when this country did not believe in its relevance. She wrote the book that has become the gold standard for the profession.

Her career spanned 75 years. Even in her hospice bed, she continued to work, giving treatment advice to nurses and their families. She truly touched everyone that she met. She was an incredible woman.

There are many pelvic pain sufferers out there who have benefited from physical therapy. I know I have; and I thought you might want to know who to thank, in part, for the treatment you have received.

Vulvo-Denial

I just want to be fixed. I keep grasping at straws. With every new treatment, I tell myself, “This is going to be the one.”

After the second round of injections failed, I became very disheartened. I wanted more information and my boyfriend helped me find it. He’s a master of searching the internet. He found an extremely comprehensive forum for people with pudendal nerve damage.

They discuss everything! At first, I found this site encouraging. There’s so much I can learn from people who have posted. But the forum also gave me a glimpse into the lives and daily struggles of these people. It was grim.

Some of the contributors have been living with nerve pain for many, many years. Some longer than I’ve alive. A lifetime of pain. Oh my God! That’s not how I want my life to be. One woman posted that after the pudendal nerve decompression surgery, that I so desperately wanted, she can now sit for 2 to 4 hours, 6 with breaks. That’s her best! I want this surgery to put an end to my pain, not slightly modify it. I had such foolish, high hopes. Now I’m terribly disillusioned.

As I reflected on my own pain, I realized that this is going to be with me for the rest of my life. I am going to be in chronic pain for the rest of my life.

I’ve tried, since my pain began, to lead a normal life. I’ve done everything I could to ignore my pain and maintain appearances. I want to be able to have sex whenever the moment arises, but I can’t. I’ve adjusted to taking a day or two off (sometimes weeks) for recovery. That’s ok with me. There are plenty of other things I can be doing that are almost just as fun. I refuse to let my vulvodynia interfere with my relationship.

It hurts me so much to admit that I am completely unable to prevent vulvodynia from interfering with my job. Like so many other people on that forum, I have to admit to myself that I can’t sit at my desk at work for 8 hours like everyone else.

When I wake up in the morning, I generally don’t have pain. In my sleep, I put no pressure on my pudendal nerve. Within an hour of getting to work, a persistent burning begins and some days I’m still feeling the same pain when I go to bed. I’ve tried cushions and doughnuts, but nothing has helped.

I realized this week that I just can’t sit like a normal person.

This might sound stupid, but to me, not being able to sit for extended periods of time at work means I have to constantly be thinking about my vulvodynia. I just want to ignore it, but I can’t. I have to accommodate it. Essentially, I feel like my vulvodynia is taking over my life.

I feel so defeated. I don’t want this life. I’m only 25. I can’t imagine a lifetime of pain. A lifetime of special accommodations. I don’t want to draw attention to myself. I don’t want people to look at me and think there’s something wrong. I just want to be like everyone else. But I can’t.

The question is, “Now what?” I have no idea. I have a desk job. Right now, I’ve got my computer and keyboard propped up on boxes of mailing envelopes and my mouse is on a hardback book. It’s totally ghetto. I’ve been standing for most of the day and I’m still in pain.

I don’t know how else I can accommodate this problem. I feel like I am back to square one. I need to sit down with my doctor and access my situation. I need a new game plan, but unfortunately I can’t see him until February 9th. Until then, I don’t know what I’m going to do with myself.

Every Block Is Different...

Before I got my first block, my doctor warned me that it could last a week or it could last a day. Every block is different. The block I had on Tuesday didn’t quite last a day. I’m very disappointed and of course, uncomfortable.

Part of my pain, I think, is due to just the ordeal of getting the injections. My doctor really has to get his fingers deep into my squish to find the best injection sites. As I’ve already discussed, my skin in that area is very sensitive and prone to irritation. I think I got a little roughed up in the process. No Pain, no Gain? I guess in this case it’s more like: More Pain, No Gain…

I honestly think I’m worse than I was before my appointment. With this problem you have to take chances, because you really don’t have a lot of options. I haven’t given up on this treatment. If anything I’m grateful for a chance to have more accurate injections. Hopefully, if they’re in the right place, I’ll see better results.

I also still have my surgery date for May, but my doctor said that he will only consider it if the pain is getting in the way of my daily life. I think I’m already there.

Another Day, Another Injection

I had my second round of injections last night. It wasn’t nearly as painful this time. I’m hoping that’s a sign that the steroid is helping to reduce the nerve compression.

I was the last patient of the night and I think my doctor and his medical assistant were a little punchy. It helps to have a good laugh before a big shot.

While my doctor was prepping me, I asked the medical assistant if I could take a picture of the needle for my blog. I said, “I just want a picture of the needle. I don’t want a shot of it in me.” “No that’ll be on my blog!” my doctor chimed in.

I started to go numb pretty quickly this time, but I’m not nearly as numb as before. That’s probably a good thing because that first day two weeks ago I was having trouble containing my business. I really want to hold onto my record of 23 years without crapping myself. I consider it a personal best.

The next round of injections will be with a radiologist to ensure accuracy. Right now my doctor feels around inside me for the ligament that houses the pudendal nerve, with a scan he will be able to deliver the medication more precisely.

I have to wait until next week to call and find out when I can get my next shots.

(I'll post that picture as soon as I can get a hold of my camera cable)