Lichen Sclerosus: Any other women dealing with this disease?

Willow, ty for your advise . Are the 2 meds for nerve pain taken orally? Are they antidepressants? I’ve heard that antidepressant can help but a bit tentative about taking those. I already take Lexi pro.
Thanks again

@eileen1022. Good morning. So I’m wondering how your visit to the urogynecologist was?
Were you able to finally get some answers? This is such a problem to deal with!
I found this support group that ay also have suggestions for you:
https://www.lssupport.net/
Will you let me know what you learned?
PS. On a separate topic, were the leaves gorgeous this year? I miss a New England Fall!!

Yes the 2 meds for nerve pain are pills taken orally. Amitriptyline is an antidepressant. It is frequently used for nerve pain. The problem with LS is that although the flares can be controlled, the nerve damage is not repairable. That is why I use the two meds and they give me back a normal life. I do have to be careful not to swim in cold water or ride a horse which is fine with me anyway.

Meeting w Avery respected Dr on Monday. I will be happy to share the information.
The leaves are amazing!!!!

@drd79, I am glad you have your lichen sclerosis under control. I have tried petroleum jelly, but how do you prevent this from getting all over your underwear? My gynecologist said I should not wear pads. Any advice is appreciated as I do not ever feel my LS is under control. Thanks! @joybringer1

Actually, you can't, and sometimes it bleeds thru onto the crotch of denims or slacks. The trick is to spread a thin layer; then I don't worry about it. Cotton panties help, or nylon that comes lined. The jelly protects from urine, which makes things worse. The relief I get is worth
washing clothes.

I am glad that Lichen Sclerosis is getting some visibility as a result of patients sharing their comments and what works or doesn’t work for them. I began having LS as a teenager and any gynaecologist that I saw kept treating me for a yeast infection over the years. In my 30s it got worse and it seemed that no doctor was aware of LS, causes or treatment, not even dermatologists. Finally a smart dermatologist who headed up the largest teaching hospital in the city diagnosed me with LS. At that point I learned that LS is a dermatology condition and not an STD. I was always puzzled as to how I could have contracted an STD. This is a good reason that if a person doesn’t get answers from gynaecologists they should make an appointment with a dermatologist. As a minimum discuss the possibility of LS with your gynaecologist.
In my 30s with yet to be diagnosed LS I felt like a leper. I was in pain, I was consequently depressed and had difficulty going to work or leading any kind of a life. Stress exacerbated my condition, family didn’t understand, some suggested that I might have AIDS. This was at the beginning of the AIDS epidemic when little was known about it. My husband was supportive and that helped a lot. However my situation was not anything you would want to experience. There are many women out there with LS, who remain undiagnosed. My heart goes out to you, I know what you are going through. Take heart, control and freedom from pain is possible. Keep seeking answers and keep talking about LS, the more publicity for this condition, the more likely that physicians are aware of it and make the correct diagnosis or referrals.

Hi Becky,
no i didnt but someone recommended a vulver specialist. i saw a brief video of him he seemed very knowledgeable and kind. i missed my appt this past week as my husband was having trouble with his truck so hoping it gets fixed today so i can reschedule as soon as possible. the burning is driving me crazy. i just want to know what it is. im not completely convinced its LS but we will see. i keep the area clean and go in sitz baths twice a day. all i can do for now. i will post as soon as i see him. thank you so much for reaching out!!

yes, always beautiful in new england!! fall is my favorite time of year!!

@drd79, Thank you for your response. Your advice makes sense and I use petroleum jelly sometimes at bedtime. I think I use too much because by morning it is all over my underwear. By the way, my usual underwear when I do not have to wear pants is men's boxer shorts. I pull them down a bit so nothing touches my sensitive areas. I wear a skirt at home and also can wear one in the summer with my boxer shorts even when I leave the house. I do not mind washing clothes either. It is one of a couple of chores I can actually do. I have to use Lidocaine ointment to numb the area and have to allow that to dry before putting on "regular" underwear. With all good wishes, @joybringer1

Wear cotton only , do not put underwear in the dryer w dryer sheets, I hadn’t dry. Don’t wear underwear to bed and cotton loose pj’s only . I’ve been told to only use Scott toilet paper which doesn’t have perfumes,
I’m headed to Dr today to discuss fraxel laser which in this case is called Mona Lisa laser. I’ll report my experience to all .