I Have What? Anybody had Lichen Sclerosus and How Was It Treated/Cured?
December 1, 2009 5:11 PM Subscribe
Coping/Curing Lichen Sclerosus?
During my lady exam in September, my doctor asked me if I'd had any jock itch type issues lately. Which I'd had and figured it was a yeast infection. Turns out it wasn't that and from her description, it sounded like the skin in that area has thickened, turned white and is somewhat fissured.
Skip ahead 2.5 months and not only am I on the 2nd prescription for a topical cream (and am using hypo-allergenic/gentle detergent and soap), but now I have an anal fissure as well. I had a follow up appointment with the doctor she shares her practice with and the term "Lichen Sclerosus" came up. They're going to have to consult and make a decision about my treatment, but from what I understand, it's either due to stress or an auto-immune disorder. I've never ever heard of this condition before. How bad/unpleasant could it get and what my chances are for getting it fixed? Anybody been through this and willing to share their experiences? I'm tired of having to apply topical ointments to both ends, not to mention the day to day physical discomfort.
During my lady exam in September, my doctor asked me if I'd had any jock itch type issues lately. Which I'd had and figured it was a yeast infection. Turns out it wasn't that and from her description, it sounded like the skin in that area has thickened, turned white and is somewhat fissured.
Skip ahead 2.5 months and not only am I on the 2nd prescription for a topical cream (and am using hypo-allergenic/gentle detergent and soap), but now I have an anal fissure as well. I had a follow up appointment with the doctor she shares her practice with and the term "Lichen Sclerosus" came up. They're going to have to consult and make a decision about my treatment, but from what I understand, it's either due to stress or an auto-immune disorder. I've never ever heard of this condition before. How bad/unpleasant could it get and what my chances are for getting it fixed? Anybody been through this and willing to share their experiences? I'm tired of having to apply topical ointments to both ends, not to mention the day to day physical discomfort.
I have it. On prescription from my OB I use a low-strength steroid cream, which has been a great help - but it really does take a few months. From what I can tell, LS does not go away - you just have to keep treating the symptoms and make sure you get regular checkups.
posted by media_itoku at 6:41 PM on December 1, 2009
posted by media_itoku at 6:41 PM on December 1, 2009
It's from 2002, so there may be more up to date information out there, but check out Elizabeth Stewart's The V Book: A Doctor's Guide to Complete Vulvovaginal Health. There's a chapter about lichen sclerosus.
Best of luck.
posted by teragram at 6:53 PM on December 1, 2009
Best of luck.
posted by teragram at 6:53 PM on December 1, 2009
I was interested in the V book. I discovered that one of the pages dealing with LS were in the Preview pages on Amazon.com.
Not all the pages on LS are available via Amazon preview, so there is more than this. (typos are mine from touch typing the text- sorry).
"While many patients with LS are adults, preadolescent girls are also commonly affected. Persistent scratching and/or recurrent "yeast" infections may be early indicators of childhood LS. Many cases of childhood LS spontaneously resolve by puberty, whereas others may require ongoing topical treatment. We now know that the same potent steroids used for women are safe for girls.
In summary, if you have LS, you have a benign but chronic skin disease. You should be screened for autoimmune conditions such as thyroid disease. You need to let other female relatives know that they might have it whether they have itching or not. You need to use strong cortisone ointment for several weeks initially and then once or twice weekly for maintenance. You need to check in at least yearly with your clinician to make sure your skin is doing well and your disease is controlled. "
posted by kch at 10:31 PM on December 1, 2009
Not all the pages on LS are available via Amazon preview, so there is more than this. (typos are mine from touch typing the text- sorry).
"While many patients with LS are adults, preadolescent girls are also commonly affected. Persistent scratching and/or recurrent "yeast" infections may be early indicators of childhood LS. Many cases of childhood LS spontaneously resolve by puberty, whereas others may require ongoing topical treatment. We now know that the same potent steroids used for women are safe for girls.
In summary, if you have LS, you have a benign but chronic skin disease. You should be screened for autoimmune conditions such as thyroid disease. You need to let other female relatives know that they might have it whether they have itching or not. You need to use strong cortisone ointment for several weeks initially and then once or twice weekly for maintenance. You need to check in at least yearly with your clinician to make sure your skin is doing well and your disease is controlled. "
posted by kch at 10:31 PM on December 1, 2009
comment from someone who would prefer to remain anonymous.
Since you neglected to include a throwaway email address I'm asking a mod to place this for me.posted by jessamyn at 11:23 AM on December 2, 2009 [2 favorites]
I've probably had it since I was a kid but wasn't diagnosed until my early 20s, about 10 years ago. I don't know how old you are but doctors like to think of it as an "older woman" or post-menopausal disease and discount younger people with it. I see a lot of frustration on message boards with people who are diagnosed and refused treatment by doctors. I was lucky and went to one of the few specialists right away but she's since retired. Now I'm basically left to treat myself since regular doctors, gynecologists and dermatologists (even at teaching/research hospitals in big cities) all are pretty uneducated about LS. Most have heard of it in school but few treat people with the condition and no one is up on the most current treatment plans.
There seems to be an idea that its auto-immune-related but there's not enough research on it to be sure and there's no cure. Its a chronic condition (I've even been denied individual medical insurance in the US because of it despite having a very mild case!). Personally, I find that it flares up due to stress and hormone fluctuations. YMMV. I don't think it's initially caused by those things, I' think its genetic.
This is a condition that works best if you treat it early on and continue with maintenance medications. After I was treated by the specialist she told me I was fine and to just use as much of the meds as I think I need. I mistakingly decided that meant I was "cured" and kind of stopped for about two years. Then I suddenly realized that all of the progress I'd made had been reversed and I was back to itching and having no labia. Now I use my meds once a week as a preventative measure and things are fine and the skin has even re-unfused a bit.
Most doctors prescribe clobetasol ointment/lotion (a topical steroid—people in LS communities call it "clob") to make the white areas go away and help with inflammation and itching. The specialist also put me on Estrace (a topical estrogen cream) to "plump up" the skin and keep it stretchy. I've since learned that a lot of people have trouble getting it prescribed, especially people under 60 or so. I've been on it since I was 21 or 22 so people do prescribe it to young women. Because the specialist initially prescribed it and she was well-respected I've been able to convince other doctors to do the same. The last dermatologist I saw (a specialist in women's dermatology) wanted to only put me on clob and I had to argue a bit to get the estrace prescription. She gave in because she knew the specialist and thought she was a good doctor. Another good thing to keep things moisturized is emu oil which you can get from natural food/healthy-type stores.
How bad/unpleasant could it get and what my chances are for getting it fixed?
Whatever you do don't google for pictures. Those are cases that have gone decades without treatment. Basically, at worse it can cause all of your skin to fuse together (I barely have labia minora and my clitoris is totally covered) and cause you not to be able to have sex. Some people have bad cases and can't even wear underwear. But don't freak out because it sounds like you've caught it early and it shouldn't progress if you continue with treatment. Follow the initial doses/schedule (1-2 time a day or whatever) initially then you can wean yourself off the meds until you just need a maintainence does. I do once a week of clob and estrace but maybe you can go less, you'll have to experiment. I would also see if you actually have it—are your doctors going to give you a biopsy so they can confirm the diagnosis? I've had two biopsies and they're really not so bad.
You are welcome to get my username/email from the mod if you need to chat or you can find support online. Here is one of the most active support groups on Yahoo Groups: LichenSclerosis. You can search the site and find out how other people are coping with it and what they treat themselves with. You'll find women from 18-70 on there. The support group here was a good resource too but its been down for a while. Hopefully they will be back up soon.
The anonymous poster above has provided you with a lot of great information, but I'll add my story. I had a bad case of LS that was incompetently managed for years, but I am very well now. You're getting this caught very early, but you should be reassured that even very bad cases can turn completely around. A somewhat explicit description follows, but there is a great resolution. YOU ARE NOT GOING TO HAVE AS BAD A CASE AS THIS because you will get excellent treatment in these early stages.
I am now in my mid-forties. I was diagnosed in my early thirties after I presented with itching, burning, and tiny tears on my vulva that sometimes bled, and a larger tear that stretched from my vaginal opening across my perineum. The biopsy my gynecologist performed confirmed that I had LS. He gave me a steroid cream to use for two weeks, then told me to use estrogen in a petroleum jelly vehicle as needed.
I stopped the steroid exactly at two weeks because he had told me that continued use would thin my skin and make it worse. You may get the same rationale from your doctor or friends and family. THIS IS INCREDIBLY BAD ADVICE. While the steroid calmed down my outbreak significantly, it didn't eradicate the problem in that brief period. I was told the only med I should continue to use was the estrogen ointment, so I did as I was told.
The estrogen ointment was absolutely insufficient on its own. On my best days, I was OK, or maybe mildly itchy. But when the LS was at its worst, I was burning, bleeding and constantly itchy. Cold compresses and slatherings of estrogen ointment would eventually drop things to a dull roar, I'd have another few decent weeks, then it would flare up again. Sex became very, very rare, because I was either in a flare-up, recovering from a flare-up, or tense and fearful of the occasional tearing pain even when I was relatively well. My labia minor were completely gone. I had developed a raised scar on my perineum that looked like a healed episiotomy, although I had never given birth.
Over a ten year period, I also saw my family doctor and another gynecologist, but they all assured me that there was nothing but the ointment for me. In retrospect, I was also responsible for this mismanagement because I really should have actively sought out someone else who could help me. But four years ago, everything turned around. My gynecologist went off on a month's vacation with no notice just as my ointment supply was 2 weeks from running out. I went through the phone book and found a dermatologist who would take me without a referral, and he prescribed me a clob-type steroid cream. Within two weeks, I was much better. I put on some cream every couple of weeks or so, as he advised, and continued to improve. I got a new gynecologist and was prescribed clob and told to go on it twice a day for two weeks, then twice a day once a week. I was in great shape within a month.
My "episiotomy scar" has faded and flattened almost to nothing. I don't get vaginal area tears. The itching is gone. I haven't seen any fissures, bleeding or cracks since 2005. And I'm having sex again. Lots of enthusiastic, pain-free and lovely sex. My labia minora are still gone, which is sad, and my clitoris is partially covered, but sex feels great and I still have very nice orgasms.
I didn't share these details to freak you out. I just wanted to show that your body can be really resilient and things can get much better, even to someone as far gone as I was.
Here's my advice:
* Be an active and informed patient. Be ready to see someone else if the treatment you're getting doesn't improve your condition. If none of your gynecologists can help, try a dermatologist.
* Get the biopsy to confirm your diagnosis. Get someone to hold your hand at the moment the anesthetic goes in, take a deep breath because it will burn/prick for a moment, wait a minute or so, then you'll find the biopsy itself is NOTHING. You won't feel a thing.
* Get ahead of the game. Once you get a regime that works, stick to it and don't backslide. Don't try to fix things after you're already itchy or sore.
* Clob or a similar steroid MUST be part of your treatment plan. The estrogen ointment might be a nice supplement, but you need to regularly treat your vulva and area with a steroid that will keep you pink and healthy.
* Keep your lady parts aired out and fragrance free. If you must wear pantyhose, cut the crotch out. Wear breathable underwear, or go commando under long skirts with a slip. Don't use scented tampons, avoid douches, use unscented detergent and dryer fabric softener sheets. If you can just wash all your underwear in something mild and unscented and let it air dry, that's even better.
* If your period gets heavy and you must wear a pantyliner or maxipad one or two days, try to avoid rayon, which is what the vast majority of maxipads contain. I lost a little ground and started mild itching again when I started using pads, but now avoid them as much as possible and I'm fine again. I may start using washable cotton pads such as Glad Rags if needed. Unscented tampons don't seem to bother me.
* Birth control pills MAY worsen LS. If you're on the pill and treatment doesn't seem to help, you may need to find another form of birth control.
* You should be assessed by your gynecologist every 6-12 months, even if you're feeling fine. A good doctor will insist on regular check-ups. If your doctor thinks you should just come back if you feel bad, get another doctor.
Good luck! While it sucks to have to stay on a treatment plan indefinitely, you have real options these days and should be symptom-free soon after starting proper treatment.
posted by clowncar at 12:05 PM on December 7, 2009 [1 favorite]
I am now in my mid-forties. I was diagnosed in my early thirties after I presented with itching, burning, and tiny tears on my vulva that sometimes bled, and a larger tear that stretched from my vaginal opening across my perineum. The biopsy my gynecologist performed confirmed that I had LS. He gave me a steroid cream to use for two weeks, then told me to use estrogen in a petroleum jelly vehicle as needed.
I stopped the steroid exactly at two weeks because he had told me that continued use would thin my skin and make it worse. You may get the same rationale from your doctor or friends and family. THIS IS INCREDIBLY BAD ADVICE. While the steroid calmed down my outbreak significantly, it didn't eradicate the problem in that brief period. I was told the only med I should continue to use was the estrogen ointment, so I did as I was told.
The estrogen ointment was absolutely insufficient on its own. On my best days, I was OK, or maybe mildly itchy. But when the LS was at its worst, I was burning, bleeding and constantly itchy. Cold compresses and slatherings of estrogen ointment would eventually drop things to a dull roar, I'd have another few decent weeks, then it would flare up again. Sex became very, very rare, because I was either in a flare-up, recovering from a flare-up, or tense and fearful of the occasional tearing pain even when I was relatively well. My labia minor were completely gone. I had developed a raised scar on my perineum that looked like a healed episiotomy, although I had never given birth.
Over a ten year period, I also saw my family doctor and another gynecologist, but they all assured me that there was nothing but the ointment for me. In retrospect, I was also responsible for this mismanagement because I really should have actively sought out someone else who could help me. But four years ago, everything turned around. My gynecologist went off on a month's vacation with no notice just as my ointment supply was 2 weeks from running out. I went through the phone book and found a dermatologist who would take me without a referral, and he prescribed me a clob-type steroid cream. Within two weeks, I was much better. I put on some cream every couple of weeks or so, as he advised, and continued to improve. I got a new gynecologist and was prescribed clob and told to go on it twice a day for two weeks, then twice a day once a week. I was in great shape within a month.
My "episiotomy scar" has faded and flattened almost to nothing. I don't get vaginal area tears. The itching is gone. I haven't seen any fissures, bleeding or cracks since 2005. And I'm having sex again. Lots of enthusiastic, pain-free and lovely sex. My labia minora are still gone, which is sad, and my clitoris is partially covered, but sex feels great and I still have very nice orgasms.
I didn't share these details to freak you out. I just wanted to show that your body can be really resilient and things can get much better, even to someone as far gone as I was.
Here's my advice:
* Be an active and informed patient. Be ready to see someone else if the treatment you're getting doesn't improve your condition. If none of your gynecologists can help, try a dermatologist.
* Get the biopsy to confirm your diagnosis. Get someone to hold your hand at the moment the anesthetic goes in, take a deep breath because it will burn/prick for a moment, wait a minute or so, then you'll find the biopsy itself is NOTHING. You won't feel a thing.
* Get ahead of the game. Once you get a regime that works, stick to it and don't backslide. Don't try to fix things after you're already itchy or sore.
* Clob or a similar steroid MUST be part of your treatment plan. The estrogen ointment might be a nice supplement, but you need to regularly treat your vulva and area with a steroid that will keep you pink and healthy.
* Keep your lady parts aired out and fragrance free. If you must wear pantyhose, cut the crotch out. Wear breathable underwear, or go commando under long skirts with a slip. Don't use scented tampons, avoid douches, use unscented detergent and dryer fabric softener sheets. If you can just wash all your underwear in something mild and unscented and let it air dry, that's even better.
* If your period gets heavy and you must wear a pantyliner or maxipad one or two days, try to avoid rayon, which is what the vast majority of maxipads contain. I lost a little ground and started mild itching again when I started using pads, but now avoid them as much as possible and I'm fine again. I may start using washable cotton pads such as Glad Rags if needed. Unscented tampons don't seem to bother me.
* Birth control pills MAY worsen LS. If you're on the pill and treatment doesn't seem to help, you may need to find another form of birth control.
* You should be assessed by your gynecologist every 6-12 months, even if you're feeling fine. A good doctor will insist on regular check-ups. If your doctor thinks you should just come back if you feel bad, get another doctor.
Good luck! While it sucks to have to stay on a treatment plan indefinitely, you have real options these days and should be symptom-free soon after starting proper treatment.
posted by clowncar at 12:05 PM on December 7, 2009 [1 favorite]
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posted by strixus at 5:21 PM on December 1, 2009