Christmas came and went and as soon as I returned to my desk at work, my pain came screeching back. Now 8 weeks into this seemingly endless flare, I made another appointment with my doctor. I was becoming extremely agitated and uncomfortable. I was losing my ability to cope.
On December 28th, I saw my doctor again, the third time about the same flare. I was angry. I felt like I was getting much worse instead of better and I wanted to know why. My doctor explained that pain is dynamic, conditions can change and they can worsen. It seemed that my pain was getting worse and it seemed that sitting the culprit. Burning pain following sex was still a factor, but nothing compared to what sitting was doing to me.
My doctor said that I would likely be a candidate for a different surgery, the pudendal nerve surgery, where the ligament that surrounds the nerve and the nerve itself are severed. This surgery is much more serious than the vestibulectomy. There is a longer recovery time and involves much larger incisions. The pudendal nerve innervates the opening of the urethra and the anus, so incontinence is rare but can result from the procedure.
My doctor told me, “you have to decide which problem you think needs to be addressed, the pain with sitting or the pain with sex.” The answer was obvious to me: I have to sit for 8 hours a day for my job. I don’t need to have sex every day. In order to continue working I must have something done. I am not interested in going on disability. I have big dreams that I’m not putting aside because of vulvodynia.
That day I got my first in a series of three injections to better determine my candidacy for the pudendal nerve surgery. It was extremely painful. I had never had direct contact on the nerve before. Sweet Jesus it hurts! My doctor had to feel around inside me to find to right spot for the first injection. When he found it, I screamed. I couldn’t help it. I was shocked by the intensity of the pain. Oh my God! Those nerves have got to go!
The needle has to puncture through the wall of the vag and then through the ligament and into the nerve. That takes a lot of force and a pretty deep prick. I shouldn’t complain too much though. Before they learned to do the injection through the vaginal wall, doctors were making injections into the pudendal nerve through the back of your legs. Can you imagine how long that needle would need to be? Good God!
After the injections, I had to wait to see if my doctor had successfully hit the nerve on both sides. He did! And for 2 days afterward all my business was completely numb except for some burning pain in my ass. No joke. I couldn’t even feel myself pee. It was weird. But it was worth it. Those injections put an end to the worst flare of my life.
I’m getting my second round of injections tomorrow. The pain has come back with sitting at work, but generally it subsides when I get home. I’m anxious to hear what my doctor has to say about the way my body handled the treatment and I’m hoping he continues to believe that the pudendal nerve surgery will work for me.
January 14, 2008
Worst Flare of My Life
I used the compound for months and saw some improvement. I didn’t grow a beard and I’m naturally always in the mood when I’m around my man, so as far as I can tell the testosterone did nothing but improve the condition of my skin.
But the compound only did so much. The most effective way to quiet a flare was still higher dose of Lyrica.
Two weeks before Thanksgiving, I did 4 stupid sit-ups on a hard floor. It became uncomfortable, so I stopped. This VERY careless action started a flare that I couldn’t get under control. 4 stupid sit-ups! That’s all!
Unlike my normal flares, I was in pain virtually all the time. My only break from pain was when I first woke up in the morning, but as soon as I got to work and sat for a little while the pain came right back. And yes, I was sitting on my doughnut!
Over the Thanksgiving holiday, the pain seemed to clear up. From Friday to Sunday of that week, I was pain-free. But only an hour and a half into Monday that same constant burning returned. It was then that I realized that sitting was causing my problem.
I made an appointment with my doctor to discuss my conclusion. He agreed that sitting for 8 hours a day was most likely contributing to my pain condition. He suggested I try a block to see if that could knock out the flare.
He had never suggested a block before and I wasn’t sure what that meant. For a block, the doctor goes through the vag wall and injects a steroid and a numbing medication into the pudendal nerve. At this point, 5 weeks into the worst flare I had ever had, I was willing to do anything.
In order to have the injection, I needed someone to drive me home. The numbing medication sometimes made people a little wobbly on their legs, which could be very dangerous when your legs are controlling the progress of a moving vehicle.
I didn’t have a driver, so I needed to reschedule and come back. Because I was going to be traveling in the coming days, I decided to wait it out and try the injections over the Christmas holiday.
But the compound only did so much. The most effective way to quiet a flare was still higher dose of Lyrica.
Two weeks before Thanksgiving, I did 4 stupid sit-ups on a hard floor. It became uncomfortable, so I stopped. This VERY careless action started a flare that I couldn’t get under control. 4 stupid sit-ups! That’s all!
Unlike my normal flares, I was in pain virtually all the time. My only break from pain was when I first woke up in the morning, but as soon as I got to work and sat for a little while the pain came right back. And yes, I was sitting on my doughnut!
Over the Thanksgiving holiday, the pain seemed to clear up. From Friday to Sunday of that week, I was pain-free. But only an hour and a half into Monday that same constant burning returned. It was then that I realized that sitting was causing my problem.
I made an appointment with my doctor to discuss my conclusion. He agreed that sitting for 8 hours a day was most likely contributing to my pain condition. He suggested I try a block to see if that could knock out the flare.
He had never suggested a block before and I wasn’t sure what that meant. For a block, the doctor goes through the vag wall and injects a steroid and a numbing medication into the pudendal nerve. At this point, 5 weeks into the worst flare I had ever had, I was willing to do anything.
In order to have the injection, I needed someone to drive me home. The numbing medication sometimes made people a little wobbly on their legs, which could be very dangerous when your legs are controlling the progress of a moving vehicle.
I didn’t have a driver, so I needed to reschedule and come back. Because I was going to be traveling in the coming days, I decided to wait it out and try the injections over the Christmas holiday.
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.
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.
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.
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.
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.
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.
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