Lichen Sclerosus Member Introductions

I have been living with this condition since 1994 and probably also had it in childhood. I run a National UK support group for this condition. I also have fibromyalgia and related auto-immune dysfunction.

I was diagnosed with Lichen Sclerosis 3 years ago.

I have just been diagnosed and wonder whether treatment can reduce inflamation.

I have Lichen Sclerosus.

55 year old, menopausal, recently diagnosed, but already with a lot of tissue destruction. this is difficult.

I was recently diagnosed with LS and am seeking to find as much information as I can.

My name is Doris Jo, and my daughter died a little over three years ago. She was only 38. When she died, I went into shock, and everything started going wrong with my body. I discovered over a year that I had Lichen Sclerosus, Diverticulitis, and overwhelmed. I still miss my daughter so much. As an indirect result of her death, my 16 year old granddaughter suddenly found herself with no structure, and gave birth last year April 17, 2006 to a beautiful baby girl, but she was and still is not ready to be a mom. She found out that having a baby would not take the place of losing her Mother. Now I am raising the baby. She is 13 months old, and yes it is difficult for me to be taking care of her, but I wouldn’t have it any other way, while waiting to see if the baby’s father will have custody. I would keep her until I died, or became physically unable to care for her. In a strange way, it is helping me with the loss of my daughter. On other days, I look at her sweet face, and she makes me cry and miss my daughter all the more.
I have developed Carpo-tunnel, something else I have never experienced, but it comes with lifting Alexis.
I fear that if I am one of those women who end up in a convelesant home, the nurses will not take care of this skin condition, and my doctor told me what will happen if this is neglected. Every thing seems so scary since my daughter passed. I never had fears or health problems until then. In fact my doctor always told me I did not look my age, and I was in wonderful health. Not so today. I feel the aging, and the physical changes with health changes, and this is not what I want or where I want to be.
I think this is starting to get into the anal area, and it really scares me. I am on a treatment and it is working. I just want more information on this condition.
Thanks,
Doris

member of Yahoo Group with partner a long time sufferer of LC

I was just diagnosed with lichen sclerosis and I’m just looking for more people with this disease to share info with. I’ve also had vulva cancer in the past so this just complicates things with me. There seems to be such a stigma with women’s diseases and nobody wants to discuss them. So it’s nice to find a site like this with a community of people who will understand what I’m going through.

My wife is battling LS.

I have had LS for several years. I would like to reach out to others that also have LS and would like to know more about it. I see surprisingly few studies on this available for the public to look at; it just seems like there have been research studies done for a time period of a few months; and that the origin of LS is unknown; it would be great if there was a whole lot more research and testing done in this area, it just bothers me that this area of research is so sporadic, and that the treatments for LS have not proven to make it go away.

I have had painful skin in and around my vagina for a few years. I attributed it to having gone through menopause. But in the last year or so, I have noticed that the smaller labias that surround my clitoris don’t seem to be separated, and I can’t find my clitoris! Gone! I finally squatted over a big mirror, and confirmed that my clitoris has been completely sealed in under the labias that have fused together.
Last week my clitoris became very painful, and I finally admitted that I needed help…embarrassing as it was!
I went to the doctor and she confirmed that my inner labias were indeed fused together and the clitoris was underneath. She gave me the diagnosis of lichen sclerosis.

She gave me a cream that has testosterin in it, and I am to apply it every day for a month, then use estrogen in my vagina.

My question: How in the world is putting cream on the clitoral area going to make the labias unfuse??? Will it? Or do I need surgery to unfuse them and release my clitoris? And if I did that, would it leave me with alot of pain?

I’m 64 years old and have had this condition for over thirty years. It hasn’t been fun and I’m out of ideas. I’d like to connect with others who have had it for awhile and those who have any new ideas. I am interested especially in diet issues and anything to soothe the discomfort.

I am 26 years old and have never had sexual intercourse or been to a gynecologist. For several months I have noticed that I have a burning, itching, irritation in my genital area, mostly around the time of my period. I have also noticed that some of the skin in that area has become discolored in patches of a lighter or white color. There has been some swelling at times and slight cracking around the discolored areas. I described this to someone who told me that it sounds like I have herpes. As I said earlier, I have never had sexual intercourse, so I don’t know how this could be possible. Also, I have done some research and it doesn’t seem like herpes to me. At first I thought it was a yeast infection or possibly a ph imbalance, but I don’t really think so. I believe that I may have Lichen Sclerosus. It is the only thing that I have found that seems to describe what it is almost perfectly. I’m not sure however, if Lichen Sclerosus is worse during or around menstruation and whatever I have seems to be worse at that time.

I know that I definitely need to make an appointment to see a gynecologist, but I would appreciate any help or suggestions.

I have had LS for a few years, although currently it seems to be in remission. More recently, my twin sister has also been diagnosed with LS.

Since LS is considered to be a Auto Immune Systen disease, I am interested in learning as much as possible since everyone in my family has at least a couple of AI disorders. I’d like to investigate the role played by genetics

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused: