February 27, 2009

Gym Woes

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

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

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

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

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

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

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

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

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

February 20, 2009

Starting a Database

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

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

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

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

Thank you very much for your contribution.

February 18, 2009

Sometimes, It Gets To You

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

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

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

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

"It already hurts."

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

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

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

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

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

I took a percocet after dinner and went to bed.

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

February 16, 2009

Vulvodynia Heroes

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

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

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

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

February 13, 2009

V Day

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

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

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

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

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

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

Woman 1:
I bet you're worried.

Woman 2:
We were worried.

Woman 3:
We were worried about vaginas.

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

Happy V Day, Ladies.


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

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

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

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

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

Thank you to everyone for their support and good wishes.

February 10, 2009

Post-Surgery Was Ugly

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

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

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

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

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

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

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

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

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

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

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

February 8, 2009

6:30 a.m. Reporting for Surgery

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

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

February 6, 2009

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.

February 2, 2009

One Week Until Surgery

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

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

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

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

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