Vulvodynia: My Tracks to a Cure
The first day I had sex again I cried. But this time it wasn’t because I was in pain. The uncontrollable tears came from what felt like years of my life lost to vulvodynia and now finally having a chance at a pain-free life. I don’t know how I got through my trial with vulvodynia, there were times I really felt like letting go. It was the most horrible period of my life and now all I want to do is to help other women from ever going through the torture I went through to becoming cured.
It’s hard to say exactly when it all started, as my case of vulvodynia gradually reared its ugly head over time. I began seeing doctors for it probably about 4 years ago, and last year it became so debilitating I could barely get out of bed. My case actually started with what was diagnosed as vestibulitus (the typical q-tip test) with pain only on contact. Later it became full-blown vulvodynia: red, raw, inflamed vulvar pain all over with no cause in site.
I tried everything! I tried the typical and somewhat forced abstinence from any sex for a full year (while I had a boyfriend). Upon doctor’s recommendations I took treatments like Nyastatin, Clobetosol, Lidocaine, Vitamin E, tea tree oil, boric acid, Estrace creams, testosterone ointments, anti-yeast creams, Diflucanzole, SSRI’s, anti-histamines, and antibiotics. I visited other types of doctors, allergists, naturopaths, nurse practitioners, muscle-testers, acupuncturists, herbalists, and nutritionists. I tried natural approaches like fasting/detox with colonics, exercise, and dieting (non-oxalate, raw foods, and elimination diets) for months at a time, as well as regular yoga and meditation. I went to counseling and emotional therapies because some experts will say we’re holding negative emotions inside that exert as physical pain. Every day I meditated, used the power of positive thinking, and visualized my inflammation going away. I even envisioned having sex that felt good (which is really hard to do when you’re in that much pain). I minimized every last ounce of stress from my life. I fanned my “area” dry everyday. I stopped wearing underwear. I tried so hard people thought my problem might be from trying too hard. (But what else can you do when you’re in that much pain?) I was asked to embrace the pain and thank it for sharing, to let go, and everything would get better. Well, that didn’t work either.
Perhaps some of these things were working or could have worked, but the problem was deeper. My vulvodynia was so relentless it couldn’t be resolved until I addressed the real health issue. Through tracking my symptoms everyday and graphing them over time, I was able to identify an extreme hormonal imbalance. I had inadvertently gone into menopause at age 25. I desperately didn’t want to do hormone replacement therapy because I felt the birth control pill (artificial hormones) is what had gotten me into this mess in the first place. With enough time working at my hormones through natural approaches (especially high quality vitamins and herbs), I finally conquered the condition I thought was going to rule the rest of my life.
Since my cure all I’ve wanted to do is help other women avoid going through the painful trials and errors I did. I considered becoming a doctor to fill a dire niche and makeup for all the help I didn’t receive. Fortunately this all could be done on a grander scale. I came across a scientific team of like-minds who endured vulvodynia for more than 10 years and all the effects of such debilitating conditions. It was clear we could have suffered a lot less if we only knew what treatments were working for other people with our specific symptoms and what experiments had already failed. Their vision was to bring patients, doctors, and researchers together to share and learn from each other at a central hub called CureTogether. With research being chronically under-funded, we knew together we could help it go faster in the lab and outside the lab. In addition to treatment reviews, we specifically wanted to open up research to everyone. Symptoms could be tracked over time and evaluated in graphs to find unique problem areas. Patients could have the option to anonymously compare their results and graphs with others to learn even more. The possibilities for discovery were endless. Because of our personal experience with vulvodynia, it was one of the first conditions studied: http://www.curetogether.com/Vulvodynia/
For my entire emotional experience with Vulvodynia visit my blog “The Full Vulvodynia Story” here with EmpowHer. Leave me comments and questions, I’m all ears. You can also find detailed reviews of all the specific treatments from me and others (successes and failures) at CureTogether’s Vulvodynia-Treatment page. Please share your experience too. We’re all in this together, and we can all help each other.
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I am very very interested in your story and what exacty you have done to conquer this aweful problem. I am 23 and have had vulvodynia and vestibulodynia for 5 years. I have taken Elavil, Gabapentin, estrogen creams,lidocaine, Diflucan, Pelvic floor excersizes, Tens unit, etc. Nothing seems to help that much, or it only gives me temporary relief. I am not sure if this all started because I was on birth control. I started when I was 14, and got off of them at age 18 because i was going to study abroad for a year. I didn't have a period for about 4 months, and then I thought I got a yeast infection. I treated the infection over and over again, but the pain never went away. Since then I have had almost constant burning and it's time that it goes away forever! I am not sure if this was coused by birth control, or if I damaged myself from overmedicating for the yeast infection. Please help me and share with me some of the things you did. I would greatly appreciate it! My email is frisby.11@osu.edu.
Thank you,
Arica
Thank you so much for this link. I've suffered from vaginal vestibulitis for about 5 years now, though it was misdiagnosed for 3 years. I'm 24 now. It's quite scary that there are so many woman who have the same issues, yet this is such an under researched area! From what I've found so far is it seems mostly hormonal, and women beginning any kind of hormonal medication really should be warned about this. I was on the pill for 3 years before any symptom, and can remember a normal pain free sex life with my partner (he's still with me, a very understanding man!) and it's depressing to know what you're missing out on. I've just come off the pills, and will try keep track of my symptoms to see if there is any change. I know it will take at least 3 months for my hormones to return to a natural state (providing my hormonal level can return to something normal). I'm not giving up hope yet! I'm going to have a look at your blog now, hopefully I can find some tips in remedies to try that might work for me.
Thanks again :-)
Thank you so so so much for sharing your story. I've been dealing with VV for 18 years (diagnosed for 15 years). I've been on birth control pills for over 20 years and also think there has to be a conection.
How did you know your hormones were out of balance and that you were in menopause? Blood tests?