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. 

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.  

What About the Bumps?

The Lyrica seemed to be doing its part, but the opening of my lady part continued to cause me a great deal of discomfort after sex. It just burned. I always used the numbing jelly afterwards, but that just didn’t seem to be enough any more. I decided to take things into my own hand and see if I could identify anything down there that could be causing me pain.

I shut myself in the office and whipped out a hand mirror and my gooseneck desk lamp. I spread my legs and began my investigation. At the southern end of the opening, I found all these little bumps. I became very worried that I had some kind of STD.

I promptly made an appointment with my pain doctor. He took a thorough look at my skin down there and concluded that I the pumps were polyps. He said my skin was so thin he could see the capillaries through it. In other words, it was so thin, it was transparent. The polyps formed when the skin tried to heal from previous sexual trauma. He said they were completely benign, but he knew of a compound that could help make the skin thicker, healthier and more resilient.

I said sign me up! Then he said it contained a small amount of testosterone. “Am I going to grow a beard?” No, the amount was so low that it probably wouldn’t make me scruffy, but it might make me horny… Again, I said sign me up!

My doctor then said something I had dreamed about hearing from the first time I heard the word vulvodynia, “you may be a good candidate for surgery.”

The surgery is called a vestibulectomy. It involves the removal of all the skin around the opening of my glory hole. Then the skin from inside my lady luge is pulled out and sutured in place.

Sounds gruesome, right? Well to me it was the most wonderful thing I’d ever heard. Ripping out that horrible skin that had caused me so much pain and replacing with better stronger skin sounded like my panacea! I scheduled a surgery date that day.

It Wasn't Just the Lyrica

Even with a lower level of Lyrica, I continued to have memory problems and I continued to struggle to be awake and alert in the morning. I was taking Ambien at the time for sleep and quickly realized that the two drugs together were a VERY dangerous combination. I asked my other doctor to prescribe me a lower dose of Ambien. Within a few days I began regaining my faculties when I woke up.

There is no one person or thing to blame for the minor car accident I had. If you wanted to blame anyone, it should be me. I got behind the wheel even though I felt out-of-it. I honestly thought I was ok. You cannot blame one drug over the other. Both Lyrica and Ambien impaired my ability to function upon waking. Together they essentially incapacitated me.

I am now extremely cautious with my use of Lyrica. I have a personal limit and I try to stay well below it. I only take high doses on the weekends when I know I won’t need to drive. I continue to take this medication because I genuinely see improvement with its use.

If I am in a flare, I’ll increase my dose over a weekend and see my pain diminish with in a day. Sometimes the pain returns as soon as I go back down to my normal daily amount, but sometimes 36 hours on a high dose will be enough to knock out the flare completely.

Serious Drug Problems

One particularly bad morning, my boyfriend woke me up to go to work. I couldn’t focus up him when I opened my eyes. I told him I was seeing double. I stumbled through my house in a daze and got myself ready for work. I was still extremely tired and out-of-it, but that was nothing new.

My boyfriend and I both got into our cars and took off for work. He was behind me on the road. After I crossed the second light, a few blocks away from my house, I drove into a parked car. It took me a minute to realize what had happened. I started saying, “oh no, oh no.” I parked my car and started to walk back to the car I hit. My boyfriend had seen the whole thing. He was terrified and angry. I didn’t really understand what was going on and I don’t remember a lot of that morning.

By the Grace of God, I only cracked the mirror of the parked car. I completely destroyed my mirror. It was in pieces along the road. My boyfriend gathered the broken pieces and took pictures of the damages with the camera I always kept in my purse. He left a note for the car owned with my name and number.

I can’t tell you what I was doing during this time. I have no memory of the situation. My boyfriend put me in his car and drove me home. Then he walked back to the scene of the accident and drove my car home. I was lying on the couch when he came home and screamed at me.

I didn’t know what was going on, I didn’t know how serious the situation was. The only thing I could understand was that my boyfriend was mad at me and he was talking to me in a tone I had never heard before. I felt hurt and confused.

I was completely unfit to take myself to work, so I called my supervisor and explained that I had been in a car accident and would be unable to make it into the office. My boyfriend insisted that I call my doctor and tell him what happened. He was on vacation so I told his assistant. My boyfriend left for work in disgust and I went to sleep for the rest of the day.

When I woke up in the evening I tried to piece the morning together. I had no idea how I got back to my house and assumed I had driven myself. I didn’t remember anything about the car that I hit. There was a voicemail from my doctor’s office. His assistant had paged him on his vacation and told him what happened. He said to scale way back on the Lyrica.

When I spoke to my boyfriend that evening, he explained what he saw as he drove behind me. I was moving through the intersection normally when I suddenly veered out of the line of traffic and into a parked car. If I hadn’t jerked the wheel to correct myself, I could have totaled my car and badly hurt myself. My boyfriend thought he could have watched me accidentally kill myself.

Drug Problems

In the meantime, with every visit my doctor increased my dosage of Lyrica to try to combat the nerve pain signals. I went from a very low dose to the highest allowable dose in a few months.

Lyrica made me feel messed up. For the first week I took it I felt drunk. As my body adjusted, I stopped feeling high, but I started having memory problems. I couldn’t remember waking up in the morning. I couldn’t remember packing my lunch. I couldn’t even remember where I parked my car when I got to work. It was bad!

The Lyrica also made me extremely tired. It was very hard to function in the morning at work. I needed to take a nap during my lunch break. I couldn’t possibly stay awake. I would start seeing double or get blurred vision.

I took Lyrica three times a day and it seemed to get better by the afternoon. I became more alert and had fewer memory problems. But mornings were the worst.

You Better Follow Doctor's Orders

The Lyrica seemed to help reduce the amount of pain I had, but found myself in a horrible flare about once a month. I would go in and see my doctor. I would tell him what was wrong and he would ask me, “are you taking the Lyrica?” Yes “Are you using the numbing jelly?” Sometimes. “Are you using a cushion?” No.

That cushion was a sore subject between my doctor and I. After a few months in a row of coming in with the same complaints and not doing my part, he let me have it. My doctor ripped me a new one (if only that were true) about that damn cushion. He told me I couldn’t get better and I couldn’t get accurate treatment if I wasn’t doing everything he told me to do.

I had an ego problem at the time. I didn’t want to carry some kind of special seat with me wherever I went. I didn’t want to draw attention to myself. I didn’t want to look like some old lady with hemorrhoids! I was only 24!

After I got scolded, I put my embarrassment aside and ordered a bunch of inflatable doughnuts. I didn’t like the kneeling pad, but in my doctor’s eyes this was good enough. I sat on a doughnut at work and in the car. If I went out to eat, I sat on my coat.

I wasn’t going to make the mistake of going against doctor’s orders again.

This Guy Is For Real!

My new doctor is a no nonsense kind of guy. He’s honest and direct. He would never blow sunshine up your ass, or lady part, as the case my be.

He conducted a series of physical tests that I had never had before. Using the sharp edge of a Q-tip, he poked my skin from my thigh down into my goods. As he got closes to my business the pain I felt became sharper and sharper. When he hit my origin of life, I almost shot off the table. Ouch!

When all the poking and prodding had ended, my doctor sat down with me in his office and explained what he thought was wrong with my area. He said he thought I had two major problems: pudendal nerve damage and weakness of the skin surrounding the opening. He said that one could exacerbate the other.

He said, “you’re not in great shape, because you have two complex problems that can effect each other, but I have seen many women in worse shape than you. I think we’ll be able to get you feeling a lot better.” He also explained that he didn’t like the term vulvodynia because it was entirely too broad.

“Painful intercourse syndrome,” that describes millions of women, but that doesn’t pinpoint a problem. Diagnosing a woman with vulvodynia is like diagnosing a corpse with death. Yes, we already know the person is dead, what was the cause of death? For example, I have pain with intercourse, which is caused, in part, by pudendal nerve damage.

My doctor prescribed Lyrica to help quiet the nerve, along with a narcotic to combat unmanageable pain flares. He also encouraged me to use my numbing jelly often because it could help relieve the burning on the skin. Finally, he told me that I should sit on a cushion whenever possible to relieve the pressure on my pudendal nerve. He gave me instructions on how to make a cushion out of a kneeling pad.

I was so happy to have new medicine and a doctor who seemed to really know what he was talking about. My doctor only sees women with some kind of chronic pelvic pain. He performs surgeries to correct various pain conditions. He really knows his shit and he’s tough as nails.