New To This Support Group but Not New To Vulva Pain

Hello Ladies, Im new to this support group but I have had Lichen Simplex Chronicus Vulva for a year now. I found a Gyno who specializes in LSC, so I started seeing her and I had such high hopes that my troubles would soon be over. I was wrong. She gave me creams, ointments, suppositories, antidepressants, vitamins, etc. It continued to get worse, the pain more severe and it was spreading across a larger area. I have horrible burning, non stop, every second of every day and it covers an area around my entire vulva, the labia minora (sp), labia majora all the way to the pubic hair area and down my buttocks. Then menopause hit me and I believe that it is one of the reasons why its getting worse. With the LSC sex with my husband was very uncomfortable but I gritted my teeth and did it. Now I cant have sex at all because the pain has changed. When he enters, it feels like a knife is slicing me open inside of the vagina and also the outside, the pain is unbearable. I feel like less of a woman now and I have fears that my husband will find a woman who can have sex, a woman who isnt depressed all the time.

Sitting hurts so much that I have to limit how long I sit, how often I sit, where I sit. I cant wear pants or shorts and I avoid wearing underwear when ever I can. I wear long skirts when Im out and when Im at home I dont wear anything. Sometimes I will wear dark sunglasses because I am so depressed that I will cry, I cry in the waiting room, at my Dr.s, I cry at the grocery store, I cry while Im driving, I cry when ever and where ever.

I have become increasingly depressed. Sometimes I wish I were dead. I sometimes lose hope and the thought of it continuing day after day and possibly getting worse terrifies me. I have other medical problems that I have learned to live with, Bipolar, asthma and chronic back pain but with LSC I can NOT learn to live with this. I must find some relief.

Ive been doing my own research and trying to find some relief outside of the box (no pun intended). I talked to a pain specialist but he wouldnt even consider trying to help me, I saw a Neurologist in hopes that he could some how so a nerve block but there was nothing he could do, Im going to see a Rheumatologist to see if perhaps I have an autoimmune disease that could be causing the LSC more problems and I will continue to look for a Dr. who can help me. In my research I have found that many women have thyroid problems and have started menopause. Ive also learned what can and can not be used in the vulva area.

I want my life back, I want to be able to have sex with my husband and I want to feel like a woman again. Im sure there are many of you who feel the same way I do. I want to do my best to find some answers and to support as many women as I can.

Hugs to all of you who suffer.

Hi there, I have answered another post of yours but wanted to respond to this one too. Now I don't know for sure if this will help with the LSC but I did see online a study they did comparing Aloe Vera gel to steroid creams/ointments and the Aloe Vera gel did better so if you haven't tried it maybe it will help. My physio mentioned thyroid issues as a possible cause of V so a simple blood test for that along with auto immune antibodies should rule that in or out. Been there, hoped a blood test would give me an answer that could be easily fixed but in my case it wasn't to be. Definitely get the pelvis checked out though, misalignment can cause it, your one sided tightness in the pelvic floor has to be connected too.

Hello Sarah, A friend of mine had suggested that I use Aloe. So since you suggested it also then Im most def. gonna try it.

You were def. on the right track, trying to look outside of the box (no pun inteded) for answers. Ive been doing research and trying to learn about this crazy thing. It gave me the idea to see my pain specialist. I thought perhaps he could do an epidural or some such thing. But he said he could do nothing about it. So then I saw a nerve Dr. in hopes that he could burn the nerves, block the nerves, just some kind of nerve block but he couldnt do anything for me either. I saw a dermatologist but once
again she couldnt help me. So Im going to a Rheumatologist (sp) to find out if I have an auto immune disease which may be causing some of the problems.

The one sided tightness most certainly may be causing some issues with it. My ins. wont pay for it though because my condition has to be acute. Im surely not gonna wait till it acute to fix it. I cant stand ins. companies.

Thanks and good luck to you