January 29, 2008

Honoring a Pioneer of Physical Therapy

On January 28, 2006 the world of physical therapy lost one of its most influential pioneers. Florence Peterson Kendall championed for physical therapy in the 1930s when this country did not believe in its relevance. She wrote the book that has become the gold standard for the profession.

Her career spanned 75 years. Even in her hospice bed, she continued to work, giving treatment advice to nurses and their families. She truly touched everyone that she met. She was an incredible woman.

There are many pelvic pain sufferers out there who have benefited from physical therapy. I know I have; and I thought you might want to know who to thank, in part, for the treatment you have received.

January 25, 2008


I just want to be fixed. I keep grasping at straws. With every new treatment, I tell myself, “This is going to be the one.”

After the second round of injections failed, I became very disheartened. I wanted more information and my boyfriend helped me find it. He’s a master of searching the internet. He found an extremely comprehensive forum for people with pudendal nerve damage.

They discuss everything! At first, I found this site encouraging. There’s so much I can learn from people who have posted. But the forum also gave me a glimpse into the lives and daily struggles of these people. It was grim.

Some of the contributors have been living with nerve pain for many, many years. Some longer than I’ve alive. A lifetime of pain. Oh my God! That’s not how I want my life to be. One woman posted that after the pudendal nerve decompression surgery, that I so desperately wanted, she can now sit for 2 to 4 hours, 6 with breaks. That’s her best! I want this surgery to put an end to my pain, not slightly modify it. I had such foolish, high hopes. Now I’m terribly disillusioned.

As I reflected on my own pain, I realized that this is going to be with me for the rest of my life. I am going to be in chronic pain for the rest of my life.

I’ve tried, since my pain began, to lead a normal life. I’ve done everything I could to ignore my pain and maintain appearances. I want to be able to have sex whenever the moment arises, but I can’t. I’ve adjusted to taking a day or two off (sometimes weeks) for recovery. That’s ok with me. There are plenty of other things I can be doing that are almost just as fun. I refuse to let my vulvodynia interfere with my relationship.

It hurts me so much to admit that I am completely unable to prevent vulvodynia from interfering with my job. Like so many other people on that forum, I have to admit to myself that I can’t sit at my desk at work for 8 hours like everyone else.

When I wake up in the morning, I generally don’t have pain. In my sleep, I put no pressure on my pudendal nerve. Within an hour of getting to work, a persistent burning begins and some days I’m still feeling the same pain when I go to bed. I’ve tried cushions and doughnuts, but nothing has helped.

I realized this week that I just can’t sit like a normal person.

This might sound stupid, but to me, not being able to sit for extended periods of time at work means I have to constantly be thinking about my vulvodynia. I just want to ignore it, but I can’t. I have to accommodate it. Essentially, I feel like my vulvodynia is taking over my life.

I feel so defeated. I don’t want this life. I’m only 25. I can’t imagine a lifetime of pain. A lifetime of special accommodations. I don’t want to draw attention to myself. I don’t want people to look at me and think there’s something wrong. I just want to be like everyone else. But I can’t.

The question is, “Now what?” I have no idea. I have a desk job. Right now, I’ve got my computer and keyboard propped up on boxes of mailing envelopes and my mouse is on a hardback book. It’s totally ghetto. I’ve been standing for most of the day and I’m still in pain.

I don’t know how else I can accommodate this problem. I feel like I am back to square one. I need to sit down with my doctor and access my situation. I need a new game plan, but unfortunately I can’t see him until February 9th. Until then, I don’t know what I’m going to do with myself.

January 17, 2008

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.

Another Day, Another Injection

I had my second round of injections last night. It wasn’t nearly as painful this time. I’m hoping that’s a sign that the steroid is helping to reduce the nerve compression.

I was the last patient of the night and I think my doctor and his medical assistant were a little punchy. It helps to have a good laugh before a big shot.

While my doctor was prepping me, I asked the medical assistant if I could take a picture of the needle for my blog. I said, “I just want a picture of the needle. I don’t want a shot of it in me.” “No that’ll be on my blog!” my doctor chimed in.

I started to go numb pretty quickly this time, but I’m not nearly as numb as before. That’s probably a good thing because that first day two weeks ago I was having trouble containing my business. I really want to hold onto my record of 23 years without crapping myself. I consider it a personal best.

The next round of injections will be with a radiologist to ensure accuracy. Right now my doctor feels around inside me for the ligament that houses the pudendal nerve, with a scan he will be able to deliver the medication more precisely.

I have to wait until next week to call and find out when I can get my next shots.

(I'll post that picture as soon as I can get a hold of my camera cable)

January 14, 2008

Faced with a Decision

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.

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.

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.

January 9, 2008

New Hope & New Pain

In July of 2006, I fell in love. It was like getting struck by lightning. He was “it.” I have never experienced feelings so strong and so genuine.

Although our emotional connection came easily, our physical connection was much more difficult. The first time we had sex the pain was horrific. I felt like I was being ripped apart from the inside. I hadn’t kept up with my physical therapy and it appeared that my body had regressed.

I was devastated. My pain was back and worse than ever, but that wasn’t the most upsetting part. I wanted to be with that man so much and I didn’t want to ruin our relationship with my sexual dysfunction. It was too soon to tell him. I didn’t want to scare him away with vag talk. This guy was super-masculine and really gun-shy about the thought of beginning a relationship. He would have been out the door at the mere mention of the word VAGINA.

I suffered in silence. My pain was the worst it has ever been. Love hurts and when you’re in love you do whatever you can to make the other person happy.

In a truly pathetic attempt to manage my problem, I kept making emergency appointments with my gynecologist. I was back to square one. Every time I saw her, there was no yeast infection, no bladder infection, no UTI and no signs of inflammation in the area that felt I had scrapped along a mile of cheap, industrial carpeting. It was becoming unbearable.

Then I caught a lucky break. I made another desperate emergency appointment for terrible pain, but my GYN was out of the office. I was given an appointment with a resident. She was eager to learn and eager to help.

I told her the abbreviated version of my pain history and she told me that I there was an expert on pelvic pain on the third floor of the building. I had heard about him and I had even tried to schedule an appointment with him a year before, but when the pile of paperwork came in the mail, I said, “fuck it.” I didn’t want to go to all the trouble. More than anything, I didn’t want to admit that my problem was “that bad.”

The resident said, “do yourself a favor, go upstairs now and fill out the paperwork there.” I did. When I got to the receptionists desk I started crying. I suddenly had to admit to myself that my vulvodynia was completely out of control. I sat for 30 minutes in that office on a comfy couch and filled out every page. I had to pause frequently to wipe to tears off my face. I couldn’t stop crying.

When I handed everything back to the receptionist she reassured me that everyone in the office was really nice and they would take care of me. I didn’t have any faith that I could get better, but I had come this far and there was no turning back. I had to do something. I couldn’t continue to live in that much pain and didn’t want to give up on this most important relationship of my entire life.

January 8, 2008

Physical Therapy

I forced myself to see the physical therapist. I felt miserable and completely ashamed as I went through the first round of exercises and exams. It was just like I thought it would be with one exception. The PT I had was wonderful.

She did everything she could to help me feel comfortable. I learned that a lot of women have to undergo pelvic physical therapy. I had to use a vaginal dilator at home to stretch my vaginal wall and help relax the muscles.

Over two months I began to see an improvement. It hurt less during penetration because the muscles were not in spasm. But physical therapy only treated one small portion of a much larger problem. I still had pain during sex and horrible burning for hours or days after.

Now Open Up and Say Ah...

Wait, Now I Don't Have Vulvodynia?

My senior year of college I found an “expert” vulvodynia. After poking around for a remarkably short time, she informed me that I didn’t have vulvodynia; I had vulvar vistubulitis, a condition where your vagina is in constant spasm. She told me that was why I had the most unbearable pain with penetration. She said I wasn’t a candidate for surgery or medication, but she told me I would need to undergo physical therapy.

I went home and cried after that appointment. I couldn’t think of anything more humiliating than having to work my vaginal muscles on the fingers of a stranger. That’s incredible private. It’s one thing to lie back, space out and have a pelvic exam, but it’s another thing to be working with the medical professional who has her hand in you.

I didn’t want to do it. I felt completely hopeless. I wanted it to be something straightforward. I know this sounds terrible, but I wanted it to be cancer. Cancer you can treat, cancer you can remove. In my mind, there was nothing I could ever do to make this go away.