Vulvodynia Support

My Story: In July of 1999, I developed Vulvodynia. I didn't know what was wrong with me. I went to my Gynecologist who ignorantly told me that it was probably the detergent I was using and sent me home with yeast infection medication, even though I had explained that I had used at least 4 doses of it already in the last 6 weeks. I thought that I might have an STD and so I visited many support sites. (Does this story sound familiar to any of you?) Well, through that search I found a doctor who told me the bad news. Three months after my onset, I had my diagnosis. I was one of the "lucky" ones.

After many years my experience with Vulvodynia has changed. I no longer suffer on a daily basis but my journey was a long hard one. Like many of you, I tried the conventional route, trying different medications. I would find initial relief only to then see a reverse in the effects. I also suffered with some side-effects of the medications. I found that what the MD's have to offer is little to nothing and only masks the problem; and never gets to the underlying cause. With a weight gain of 30lbs on my five ft frame and living with daily pain I walked into an Acupuncturist's office one day and started my road to recovery. To read more about my story vist the following link. www.vulvodyniasupport.com/lauren.html

The majority of MD's say it isn't a wide spread disease. Those are the ones who acknowledge us at all. The rest would like us to live in the dark ages. They tell us to relax and it will "all go away". However, estimates show that as many as 15% of all women develop and suffer from some form of Vulvodynia. Experience has shown me that not even half have shown their voices. We cannot wait in silence for a cure, or hope that someone else will raise their voice. We need to support one another in voicing our rights for better treatment. It is time to show the world how many of us there are. It is time to get loud. It is time to take responsibility for our own recovery. And we can do this together. It is time to make our voices heard! It is time to take a role in our recovery. It is time for us to get involved.

I have been contacted thousands of times over the years asking for my help and/or advice. While more than not I have heard "thank you", I have also gotten some negative responses. I'd like to believe that means I am doing something right. I believe that makes me fall right in the middle, taking no sides and makes me as independent as humanly possible. I do not run this site for any other reason than to offer some free information and a place where women can leave queries to reach out to others. I clearly remember what it was like to live in such pain, be so confused as to my choices and have little to no information available at my fingertip. When I started this site five years ago, I wanted to make sure that noone else has to go through that too.

I cannot in good faith push current medications or surgery on the population knowing the side-effects and the efficacy rates to eleviate the pain. I would never tell any adult they don't have the options of drugs, but I clearly will not state that I feel this is the best option. If you read my story, you will see that I too did go down that road. But if you are asking for my advice that is not what you will hear from me.

When you do reach out for help (to me or another woman who has posted on this site) here are some key things to keep in mind.

Be open-minded and ready to receive answers you wouldn't expect. Those who came before you have experienced so much and each path has been very different from the other.
If you have a specific question ask it. Don't expect the person you write to, to be a mind-reader. If you are someone who only wants to know about drugs say so. If you are not open to alternative medicine let that person know so they can get you the information you need or if they can't they can clearly tell you so and point you to another source.
Before emailing questions, read this site in its entirety. You just might be surprised to find the information available to you already. HINT HINT, there are six main pages on this site that include a listing of recommended doctors from other patients, stories from other patients and even a husband of a sufferer.
Support doesn't necessarily mean giving you the answer you wanted to hear. Many times it can end up being just the opposite. This disease is so complex and we have to be honest with each other in our truths in order to give the best help and support to the next woman. Sometimes this can be a sad experience, but in the end the truth shall help you find the right path to your healing.