Life with Vulvodynia & Pudendal Neuralgia: A Year In Review

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. 

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

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.   

Bad Night Back at School

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.

If Only I Were an Oyster

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.

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.

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.

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.

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.       

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.

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.

The Year of the UTI

My second year with vulvodynia was the year of the UTI.

With college back in session, I resumed regular sex with my partner. On top of the persistent pain during and after sex, I started getting frequent UTIs. It seemed like every time I had sex I got a UTI. It was like clockwork. But my UTIs weren’t like typical UTIs. I didn’t experience frequency, urgency or even burning. My UTIs were all about cramping pain.

The pain with urination was far more debilitating than any of my pain associated with vulvodynia. Toward the end of urination I would feel this horrible cramping pain that truly took my breath away. The pain usually didn’t subside for an hour. During that time, all I could do was lie still and wait for the pain to pass. On days when I had a UTI, I didn’t make it to class. I was in so much pain I just couldn’t function.

The UTIs were happening every two to three weeks. I would take 10 days worth of Cipro, feel better, have sex, and be back at the health center within two days of intercourse. It was ridiculous! The health center always took a urine culture, but regardless of the results, I was given antibiotics. Every few weeks I went through another 10-day course of Cipro.

It all began to take a toll on me physically and emotionally. I really started to hate sex. I found myself crying a lot. I was so run down and powerless. It just wouldn’t stop.

After four months, I found a urologist who told me that based on the arrangement of my anatomy, I would always get a UTI from sex unless I was protected by a daily low-dose antibiotic called Macrobid. I asked him if it would ever get better and he said, “maybe after childbirth.”

At least the Macrobid seemed to get the UTIs under control.

My First Diagnosis...of many

After an entire semester of sexual pain, classes ended and I went home.  I had three months of rest and recovery.  No sex.  No pain.  No burning.  Then I went to my gynecologist for my annual checkup.

When she inserted the speculum, I screamed.  It was the same piercing, jolting pain I felt every time, but worse, because I wasn't expecting it.  I remember lying on my back with tears rolling down my temples and into my hair.

The doctor found some inflammation and told me to abstain from sex for at least a month.  I told her I hadn't had sex in close to two months, which prompted her to inquire about my sexual history.  Vulvodynia was the diagnosis she gave me, and with it, she wrote a prescription for Amitriptalene.  She explained that in vulvodynia, the skin in that area is less resilient and a low dose antidepressant can help the skin recover better.  She also wrote me a new prescription for Xylocane jelly.

I felt encouraged to learn that medication could make me better.  At the same time, I felt ashamed.  There really was something wrong with me, but I couldn't talk about it with my parents and I didn't want my partner to know.

I thought, "What person would ever want to be with someone who is sexually dysfunctional?"

I found myself feeling even more alone and discouraged than I had sitting in that drawer in my dorm room.

There Was No Vacation from the Pain

For Spring Break, I went to vacation with my partner and my parents.  The sex I had on the first night ruined my entire vacation.  The next day I felt horrible burning that made it very uncomfortable to walk.  Over the next few days, it got so bad that I had to ask my parents to take me all around the island looking for something I could use for soaking.  There were no bathtubs where we were staying.  At the biggest supermarket on the island, I found a cat litter box that was the right size.

I felt so humiliated.  When we got back to the hotel, I sat in the cat box on the floor in the bathroom and cried.

Then It Got Out of Control

Within two days of my first sexual encounter, I was in searing pain, there was pus weeping from my vagina and the health center was closed. I went to the emergency room because I didn’t know what to do. I couldn’t take the pain any more and I was worried that something was horribly wrong.

I went to a women’s hospital near my college. After hours in the waiting room, a doctor told me that I had a yeast infection and a urinary tract infection. She gave me Xylocane jelly to relieve the burning, a prescription for Diflucan and an antibiotic for the UTI. She told me to NEVER use colored or flavored condoms. She also told me to use a lot of lubricant to prevent irritation. I wish I had known all that before I had sex. Those shitty condoms should come with a warning label.

The infections cleared and the burning pain dissipated. As soon as I thought I had healed, I attempted sex again. I felt the same agonizing pain upon insertion and burning for hours after sex.

Xylocane jelly became a constant in my life. I used it after every time I had sex. It helped, but it didn’t do anything to treat the problem.

More pressing, was the pain I felt with penetration. Remember what if felt like to get your ears pierced. The jolt of pain as the pointed earring broke through your skin and then the burning that followed as a foreign object hung in your lobe.

Imagine that on a much larger scale. The best way I can describe it is feeling like I was being ripped apart from the inside. And no amount of lubricant lessened that persistent, jarring pain.

I didn’t know what was wrong with me and I was too ashamed to tell my partner. I wanted to enjoy sex and I wanted to please my partner, so I swallowed my pain. I had sex frequently, even though it hurt, because I wanted to be normal.

The only other relief I got was from soaking in warm water. Problem was: I lived in a dorm with no bathtubs. I filled a drawer from a plastic storage unit with hot water from the bathroom sink almost daily for just a few minutes of relief. It was humiliating to sit on the floor of my dorm room with my ass wedged in a drawer, but it was the only thing I could do to alleviate the pain.

The Loss of Innocence and the Start of Pain

The first time I had sex I was a freshman in college. I was uncomfortable and poorly prepared. The condom, chosen at random from a bowl in the Resident Assistant’s dorm room, was colored and flavored. Tropical banana or wild cherry. It didn’t make a difference to me. I had no idea what I was doing.

I felt like I was being ripped apart from the inside at the moment of penetration. The intensity of the pain startled me, but shortly after it began, it passed. Very soon after that, the sex was over. It lasted maybe a grand total of 30 seconds, although that’s probably too generous.

As I lay on my back wondering what ‘the big deal’ was about sex, the burning started. I felt like someone had put out a match on the skin inside of me and there was nothing I could do to stop the pain. I told myself that this must be the way all women feel after their first time.

I was wrong.