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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Add a Comment21 Comments
Your story bought me hope, (8yrs of suffering).
November 5, 2011 - 4:23amWOuld love to know the details of how you do yuor hormones were out and the vitamins and herbs you took to recover?
This Comment
Hi my name is Dianne, I have had vulvodynia for 13 years now, did you find out what vitamins she took ?
May 22, 2015 - 12:47amThis Comment
Hello, I am an 18 year old female,with Poly cystic ovary syndrome. I believe that I have some type of vulvodynia. I seem to have this burning sensation on my left side of my vagina and it has not disappeared since last November. I was placed on birth control bills to regulate my cycle, but i strongly believe that these cursed pills did this to me. The gyno's say that birth control pills can't have that reaction. I think it's BS. Please help me!!! I am constantly crying and having a mental breakdown. I need this to go away, I wanna have a healthy sex life. (BTW have not had sex yet).
April 26, 2011 - 1:35pmThis Comment
finally got told i had this after years with no answers and still now it controls my life iv had this for 8 years now and its a nightmare i cannot hold down a job because there are days were i cannot get out of bed let alone get dressed the pain is unbearable , the medication is a nightmare with all the side affects its just a constant nightmare that never ends , i feel so alone all the time :(
February 22, 2011 - 2:18pmThis Comment
Eek! I know what you mean by not holding down a job. Luckily I was in a safe transition time, but as I was starting new work I also found myself quitting again just so I could focus on curing myself and health. My heart goes out to you. Please hang in there, I really think there's a balance for most. You have to do what's right for you, but I wanted to at least highlight my related experience- that the creams/meds made me significantly worse down there. My "area" became just so overly reactive to ANYthing and everything after trying too many foreign ointments/chemicals/yuck down there.
February 24, 2011 - 10:36pmI'm going to copy this to the comment above too because I'm not sure if it notifies the person directly otherwise.
-Faf
This Comment
Im 17 years old, i have vulvodynia, and i cant take much more. had so many medicines, so many creams. Some days its so bad i feel like giving up, faf i understand everything you said, No-one understands the pain, or frustration, except a fellow sufferer, My doctor is trying everything, but we just cant get to the bottom of this.Im glad you got rid of this awful thing, and i hope one day i do.
December 26, 2010 - 3:35pmThis Comment
OMGoodness, I'm so sorry.... it hurts me to hear of other suffering the way I did... You have to do what's right for you, but I wanted to at least highlight my related experience- that the creams/meds made me significantly worse down there. My "area" became just so overly reactive to ANYthing and everything after trying too many foreign ointments/chemicals/yuck down there.
February 24, 2011 - 10:32pmI'm going to copy this to the comment below too because I'm not sure if it notifies the person directly otherwise.
-Faf
This Comment
Hi is it possible for you to contact me? Your story sounds so much like mine and im in daily pain and would love to be given some advice.
September 23, 2010 - 3:39pm(Personal email address removed by EmpowHER Moderator.)
This Comment
Anon - Thank you for writing. The purpose of our site is to advocate for women's health through shared information. We do not, however, support the posting of personal email addresses on the site. If you register as a user you will have access to the private email system within the site and can use that system to contact other members. They can then choose whether or not to respond to you. I hope you will join the site, you'll find a lot of good information and support.
September 27, 2010 - 5:50pmTake care,
Pat
This Comment
Anon - You may want to contact the National Vulvodynia Association at http://www.nva.org/ to see if they can help you find a physician in your area with specialized expertise. They also have an online learning program for patients that you may find helpful too. It's at http://learnpatient.nva.org/
They also have support groups where women can help each other. There's more information here:
http://www.nva.org/support_services.html
Good luck to you, we hope you find relief from the pain.
June 28, 2010 - 6:44pmThis Comment