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. 

Vacation without the O

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

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

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

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

No O!

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

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

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

Reiki Session

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

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

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

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

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

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

If Only My Jaw Were My Biggest Problem...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It's Hurting More...

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

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

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

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

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

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

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

Zumba + Pudendal Neuralgia = Freaky Pain

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

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

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

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

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

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

Remembering Florence P. Kendall

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

It still hurts. 

She was my cheerleader, my inspiration and my hero. 

I miss her.