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Vulva WHAT? A Day In The Life of a Vulvodynia Patient. The Silent Female Disease. by Lauren Kunis
Note from the editor: The below article describes personal experiences of a woman suffering from vulvar pain. SexualHealth.com wants to emphasize that we never diagnose nor treat medical problems via our website. One of our main goals is to promote information about sexual health issues and to make this information available to the consumer. We do want to stress the importance of discussing various drugs and treatment options mentioned in the below article with your prescribing physician. We thank Lauren for her input!
My emotions run the gamut. I am angry, sad, too depressed to care, in too much pain to care. I have Vulvodynia. Vulva what did you say? I asked the same question a year and a half ago to the doctor who finally diagnosed me. I was completely blind sighted by this diagnosis. What is Vulvodynia, you ask? Vulvodynia is a painful chronic vulvar disease with enormous discomfort and pain. Complaints range from burning, stinging, swelling, itching, irritation and rawness of the female genitalia however Vulvodynia pain is highly individualized. It is estimated that as many as 15% of all women are currently suffering from Vulvodynia. AND currently there is no cure.
I didn’t have time to react. I only knew that I didn’t like what I heard. I had been suffering without any relief for 2 months and the only thing I could think at the moment was that I would take ANY drug the doctor would offer me that could bring me any relief possible. By this time I had already seen one other gynecologist and a family practitioner and I just wanted the daily, constant pain to go away.
When the idea finally sunk in and the crying stopped I got angry, really angry. Why had I not heard of this before? Why didn’t my last gynecologist know about Vulvodynia? Why don’t they educate women about this disease? Why isn’t anyone talking about this?
Now that I had the word for what was wrong with me I could do some research online, right? Wrong! This did not prove to be very helpful either. At that time, very little information was circulating about Vulvodynia. I found a few websites. Some I found very self-serving and not in the best interest of the patients, others I found helpful and informative. I landed on the National Vulvodynia Organization’s site where I learned that I could find a support group in my area through their network. I chose to start down that route. I signed up for their newsletter in the hopes that it would bring more knowledge my way. I hoped that I would learn that more and more doctors were interested in learning how to help women with my disease. Mostly, however, what I learned was that what I already knew was more than most doctors. I also learned that most doctors weren’t interested in learning more, or being involved in this fight at all.
How do I begin to help myself now? I combed every message board I knew of. At first I didn’t even know where I was leaving messages. I couldn’t think. I was on automatic pilot. I typed the word Vulvodynia into the search bar. Days later, Sandy’s mail appeared in my in box. The need to rely on her and her words were enormous at first. I felt so isolated. We exchanged emails for a long time. I cried to Sandy, since she was the only one I knew who understood what I was going through.
The NVA’s information finally arrived and I read and read and read, and I tried one support group. By this time the medication I was taking, Elavil, was helping me to cope through most of the day. When I was not groggy from the medicine I started reading the other message boards, leaving messages and exchanging emails with other women. I remember feeling like my form of Vulvodynia was rare. I felt isolated. The women that I met at my one and only support group meeting did not have the same symptoms as me. On the one hand it almost brought me hope. Maybe my diagnosis was wrong. Maybe there was hope for me after all. Maybe what I had was something that could be treated and cured. On the other hand I remember the faces of some of these women when I described some of my symptoms. It was one of horror. Their eyes became large, bulging, as in disbelief. That brought me a greater feeling of isolation. I was hoping that I would find some comfort from these women. Surely they would share the same pain I was feeling daily! But they weren’t and they had never heard symptoms like mine. But I continued to scribble my notes. One woman tried a drug called Effexor, another Neurontin. I learned that yeast was a problem for some and they took boric acid suppositories to help control the content of their vaginal cavity. I remember thinking and voicing my concern over the use of boric acid. It is poison. How could you use poison in your Vagina? Isn’t that what they use to kill roaches? What is that doing to your insides? I brought this information back to the doctor who diagnosed me.
It was less than a year since my diagnosis and I was already jaded. I could see the writing on the wall. There was no cure and none in sight. It was up to me what path I was going to take in this fight to get better, to feel better, to regain my life back. I took the Elavil for about 2 months. Eventually the dose I was taking was no longer effective. This came as no surprise to the doctor who prescribed it. She asked me to turn to my list of drugs that I had from the support group meeting. The list I composed from the other women. This was going to be a trial and error. The path I was going to take would be like no other. I was going to set the path. The doctor was looking towards me, the layman. I knew more than the doctor. And so I read a few names of drugs I wanted to try. I tried the Effexor next.
I warned my staff at work that I might not be in the next day. I told certain key people that I would be trying a new drug. I knew it had some side effects that included nausea. The pharmacist explained that if I were going to have a bad reaction to the medication, it would show within a couple of hours. I relied on that information and took my first does of the Effexor that night. After three hours I still felt ok and so I went to sleep. In the middle of the night, I woke with a sickness I had never felt before. The nausea was so overwhelming. The heat and cold running up my neck lasted through the night and half the day. I found myself sleeping on the linoleum floor outside my bathroom, with my head at such an angle so that I would not throw up. If I moved a centimeter the nausea would return. If I were to get any sleep that night, that would be the only way. The next morning I returned the drug back to the pharmacy. I didn’t want it in my house.
By this time I had started my search into alternative methods and soon I was on my way to Acupuncture treatments. For the last few years I had been exploring a healthier lifestyle. I had cut most meat out of my diet. I consumed soy milk instead of regular cows milk. Eastern medicine had been around for thousands of years. There must be something to it. Treatments began once a week. I went back on the Elavil for a short time after the treatments started. I felt some relief after each treatment. I stopped the Elavil. I started taking herbs. And ultimately this is the path I stayed on.
A few months later the pain started to become more intense again. I turned to my new GP for some help with a new drug I wanted to try. I had learned about Neurontin. However, my GYN refused to prescribe it to me. Her exact words were that she “did not know much about this drug” and she didn’t “feel comfortable prescribing it” to me. I felt the steam rising from my head. How dare she send me on a mission to find information for my own treatment and then tell me she doesn’t feel comfortable prescribing that medication for me. The pain that this disease inflicts on its victims is like no other you can imagine. For a long time I felt that, at least for Cancer patients the pain was going to go away from the treatments or you die. Either way the pain would be gone. When would my pain leave? How do I cope? This woman obviously did not understand the pain I was in. I hate drugs. I hate relying on medications. I would much rather find a healthy way to heal. I would much rather eat right, take herbs and exercise to make this pain go away. But the plain and simple truth was that my body became stuck in the pain cycle it was in. The Acupuncture was helping, but it wasn’t breaking the cycle. Walking was painful. Sitting was painful. Life was painful. Coping was almost impossible, and thoughts of suicide entered my mind more than once.
I had a phone conversation with my GP and she said she wanted to do some research before she prescribed the medication I was asking for. She conveyed that she wanted to find the right dose and had heard about Neurontin helping people with chronic pain, but needed to research its uses for Vulvodynia patients. About two weeks later a packet of information arrived with a copy of a study she found that dealt specifically with Neurontin and Vulvodynia patients. I couldn’t help but feel enormous gratitude. The feeling was so deep, and I felt like crying. This was the first MD that took the time to research anything for me. I didn’t have to do the leg work. I didn’t have to fight. She prescribed the medication for me, and I have been on that ever since. I felt immediate relief from it, however it did not kick in fully for months.
I continued the acupuncture and read more and more. I started to feel that my flares were being caused by yeast. I discussed this possibility with my Acupuncturist who was also an herbalist and nutritionist. We discussed an herbal regimen, to cleanse the yeast from my body. For three months I ate no bread, almost no sweets and very little sugar in my diet. I took three types of herbs three times a day. After two months my flares were almost non-existent. For me this seemed to be the path to my “recovery”.
While I have had times since where the pain has come back, the amount of time that it happens are much fewer. Recently I have gone through 8 weeks where I have suffered no pain. I still have sensations of tingling, and popping. However, they last for minutes and happen few and far between. I will continue Acupuncture for the rest of my life. I continue to take the Neurontin and I refuse to think about the long term affects it may or may not have on my body. For this Vulvodynia patient, it is much more important that the quality of my life is good, rather than the quantity. I have found my path and I will continue to fight for others to be able to do the same.
The isolation and depression that surrounds the women that suffer from this disease is unacceptable. More knowledge needs to be gained about Vulvodynia. Doctors and researchers need to devote their time to the cause and cure of Vulvodynia. Women who suffer from Vulvodynia deserve the respect and help of the medical community.
For more information on Vulvodynia, support groups, and doctors that treat Vulvodynia patients please visit the following websites: www.vulvodyniasupport.com, www.nva.org, and www.vulvarhealth.org . This article appears in the following topics:
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