I starting having the unbearable itch in my early 20’s. my boyfriend would wake me up because I would scratch in my sleep. One night having sex I tore so bad about 3 inches and almost down to pelvic bone deep in my labia fold. The ER Dr’s were amazed and had everyone come in the room and take a peek. From then on I went down hill. Painful tearing when trying to have sex, blisters, fissures, a white cigarette looking film that would peel away. I went to several different doctors. Dermatologist, gynecologist, vulvadynia specialist. I was misdiagnosed but all the same I started clobetasol and estrogen cream. I started drinking to much and doing drugs to ease the mental pain and physical pain. I did a lot of damage. Still went to more doctors who always prescribed me more steroids. The steroids helped but did not stop the disease. During bad flares I would have steroid injections in my butt. I have tried every natural remedy I have read about. I found emu oil to be a great lubricant. At this point I have fused completely. My clitoris is long gone as is my labia minors. The entrance to vagina is so small I can barely fit a tampon in me. I have felt like I am not a full woman and have had times of severe depression due to this awful disease.
6 years ago I decided to get sober and started a journey of self love with many slips and falls. When I was in rehab I went to UCLA dermatology and had my biopsies and finally got the diagnoses to what I already knew I had. I also went to Dr. Nathan Newman to ask about stem cells in that area but couldn’t afford it. I tried having sex( lasted about 1 minute due to pain) and accidentally got pregnant and had a little boy who has been my reason for living. Obviously had to have him via c section because doctors said I would be wearing a colostomy bag if I had him vaginally. I haven’t had a relationship in 10 years and have given up on even trying. . Fast forward to now and I have a Dr friend who was interested in helping me. This is my journey now to see if it works.