Story, Acupuncture, Herbs and Conventional Medicine
The following story is one woman's struggle with pain. There is more than one way to treat Vulvodynia, and there are no sure fire cures. Each woman's Vulvodynia is highly individualized. Each woman's definition of recovery will be differerent and each needs to find her own path to this recovery. All readers are strongly recommended to seek expert medical attention for diagnosis and treatment of their conditions.
September 1, 1999, after weeks of going to my primary care physician, and former gynecologist, and searching high and low for any information and help online, I went to a new ogbyn. I found her through a Herpes support site. That was the only information I could find online that related to any key words I would enter in the search engines. Not surprising! Who had heard of Vulvodynia. What the hell was that? I got my answer that day.
I had fully expected to walk in, get a drug and be done with this. I never thought in the year 1999, just before the turn of a new century, that a female disease could exist that the medical community knew almost nothing about and had almost no treatments for.
For me the pain was constant, 24/7. I couldn't sleep by the time I saw this new doctor. I walked in, and sat down in her office and I remember saying sarcastically, never thinking this would actually be true "If you cannot help me, give me enough drugs to kill me!" How did she break this news to me. Well, I will tell you. She said, "I have good news and bad news. The good news is that I know what is wrong with you. You have Vulvodynia. The bad news is that there isn't much to offer you in the way of help." With that she showed me to the exam room, and saw that I was red, swollen and raw. She offered me Elavil, an anti-depressant. She said it would help to numb the nerve endings. I was given a dose of 10mgs a day. I gladly took it. And for a short while it did offer me some relief.
For the next few months I was in a fog. I couldn't think clearly. I am sure it affected my behavior. The Elavil made me very tired, even though the dose was only 10mgs. Eventually it stopped working for me and I went off the drug. I made many posts online anywhere. I had no idea where I made them or how I made them. I just posted. The Internet was so new to me. I had never heard of message boards before. I searched the engines for my disease, but I would get two or three listings and nothing else. The information just wasn't out there. I ended up emailing with Sandy who also had Vulvodynia. After all, she was the only other woman I knew who was living what I was.
Eventually I joined the NVA and went to one support group. Personally I didn't find much solace in that. About a handful of women showed up and none of them had symptoms like mine. They looked at me like I had three heads. They were mortified. Not much comfort in that at all. I took paper and a pen with me and wrote down the names of things they had tried. I did this upon the suggestion of the obgyn that diagnosed me. She told me I was the expert. I didn't understand that comment at the time. I do now!
I went back to my gyn and told her I wanted to try Neurontin. She turned me down. I was pissed! She sent me on a goose chase to learn of alternative treatments to Elavil. Then she tells me she isn't comfortable with what I want to try. About a month or two later I ended up seeing an internist as my new primary care physician. I discussed my Vulvodynia with her and how I wanted to try Neurontin. She was very understanding. She said she wanted to do some research and then prescribe it to me if what she found was promising. Sure enough, two weeks later I recieved a package in the mail. She had found a study on Vulvodynia and Neurontin and mailed it to me with my prescription.
I began taking the Neurontin and I found it to help me cope with the pain. I took 300mgs a day. I never found full relief from this drug, but most days it helped. I found that my pain cycle would fluctuate and there would be days where I would have to take more than 300mgs. When the pain level would go down I would go back to the 300mgs a day. Around the same time, I tried to go back and excersize again. I had not been able to do this for a long time and I had gained 30lbs in one year. Never being rail thin to begin with, I was quite large now. Vulvodynia and fat!
Down the hall from the health club I was using was an Acupunturist. After trying to use the treadmill and being in such pain, I walked down the hall and cried to the Office Manager who got me a consultation quickly. I have been going ever since.
I started Acupunture once a week for a long time. Sometimes the treatment "results" would last only as long as the visit, and other times I would feel good for a few hours, then a few days. I would have my ups and downs with this. Acupuncture works by helping your immune system to help itself. It does this by working the "channels" that are blocked. Vulvodynia patients, have a damaged immune system, which makes our liver lines blocked. The blocked channels eventually lead to Vulvodynia in our case. Because there is no cure, and no known cause, I will have to keep going to acupuncture for the rest of my life to maintain my health. (Much like any chronic illness.)
After one year of acupuncture, my pain level reduced and held steady. Along the way I started taking herbs "prescribed" by my practitioner. At the same time I was doing all this, I developed a relationship with my friend Diana. Diana was a g-d send. She would send me research almost daily. Eventually she sent me information on a yeast connection. At first I dismissed this. I felt I had been tested and was negative. But the more I read the more I felt I had this problem, systemic yeast.
I learned that systemic yeast can cause IBS, affects your mood, and can make you tired all the time. As a child I had severe IBS, and still had trouble as an adult. My mood was terrible, but when you are in pain 24/7 for months, years, you would be miserable too. I was tired as well. I had been itchy with no discharge and thought, maybe I have systemic yeast. I figured, that with my damaged immune system, even a small amount could be triggering some of my Vulvodynia symptoms. It just seemed to add up and make sense.
I brought this information to my practitioner and asked him to devise an herbal yeast cleansing program for me. I did this program for 3 months. I took Candida Complex, Paraguard, Phelostatin and Ultraflora Plus DF. I took these items 3 times a day at specific doses, for three months religiously. I stopped eating all breads, except Spelt without yeast, no sugar and no cheese. At the end of the three months my flares became almost non-existant and have stayed that way for almost 2 years.
Eventually I went off the Neurontin. I continue to go to acupuncture two times a month. I take many herbs to help keep my body in balance. I notice that when I have to skip an appointment or when I get lazy with taking my herbs, I do not feel as well as when I am doing as I should. I am 99% pain free and I have very few problems with flares if any. I have been this way for almost 2 years.
Three years ago I had full blown Vulvodynia. It now seems as though I have Vestibulitis: pain on contact. Sexual intercourse can be obtained, but can be painful in certain areas. Duration cannot be as it was before I got sick. Quantity cannot be the same either. Hopefully I will be one of the lucky ones that finds a supportive man to share my life with and will work through this issue in a loving way. Only time will tell.