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lichen sclorosis

I was diagnosed as having lichen sclerosus in 2000 and have been on creams ever since but for some reason they don't seem to be working very well now. I also have recently been diagnosed with type 2 diabetes, am one thyroid meds.
My question is for the lichen sclerosus, who would be the best MD to go to, dermatologist or gynecologist ? I am 62 years old and not looking forward to this in my golden years....
Barb
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To Morem and others, from what i've read on this page, as your daughter has perhaps not yet reached puberty, she has a far better chance of the Lichen Sclerosus disappearing once her hormones naturally kick in. She will still need to "be aware" as she grows up and look after herself. Following other checks, our daughter takes daily Azathioprine with some positive result. Also Hydroxyzine at night to help with itch, again with positive results. Wifey also has biopsy proven LS in its very early stages (they've been saying the same for about 6yrs! - one derm' said there was nothing wrong until I had to force the issue, hence the positive biopsy - didn't use the same derm' again). It does lead me to believe this is without doubt genetic. She's on the bog standard medication which I think causes more harm than good (my sole opinion). Here's the thing, all you guys investigate "ELIDEL 1% CREAM". It contains NO steroids and has been proven effective and safe in the treatment of LS. My wife's derm' wont give this to my wife - strange eh! Good luck
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My daughter just turned 9 and is diagnosed with ls and I am heartbroken reading all of these.Do you guys get better with the treatment or do you think she will be in pain forever?do you think this will effect her having children?
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Just found out that I do not and never have had genital warts.  Gone through some terrible times using GW treatments and ending up throwing medicine in the garbage.  Been dealing with LS symptoms for years.  Number of years ago, a pathologist misdiagnosed a biopsy.  Since then, all professionals have been operating off of that incorrect diagnosis.  Saw a nurse practitioner in the same ob gyn clinic.  After an exam, she said "you do not have GW. . .I think the pathologist made a mistake.  You most surely have LS."  I go in this coming WED for a second biopsy to confirm the LS.  I am 60 years old/female.  This has been a nightmare, living with pain, difficult sexual intimacy, dealing with emotionally challenging scenario for years.  I only wish I had kept going to drs. and trusting my gut that I did not have GW.  I wish I had been to see an dermatologist since I really did believe that this was a skin issue.  But I wasn't aggressive and I kind of gave up.  Only when the LS began encroaching on a bigger tissue area, did I get the courage to go back in and say, "are you POSITIVE that I have genital warts?"
Fortunate for me I saw a very competent nurse practitioner who has seen it before.  She says she has seen about 20 LS patients over the last 4 years in practice in her gyn practice.  
So now, will I get better?  Will I get relief?  I worry after reading some of your posts, frankly.  Sounds like the meds prescribed for LS may not be what we all would hope they would be.
I am relieved to have a correct diagnosis, at least, I will know for sure next week.
I only hope that I have better days to look forward to.
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I have had LS for about 1 1/2 yrs and am on Clobetsol.  I can't really say it works all that well.  I get swollen and very red.  At times I even resort to using ice packs.  Wearing tight clothing (just as jeans) makes the problem worse.  I have resorted to wearing pants a  size larger.  At night, don't wear underpants.  I don't know if this is a coincidence or not, but I seem to have bowel problems at the same time I get a LS flare up.  Anyone else?  Also I noticed the skin on my thighs (inside) get red and irritated when they touch each other.  At night, it feels like they are glued together and painful when I move and they separate.  I think Omega 3 helps with inflammation.
Suggestions are always welcome.  I too go to a OBGyn.  I tried going without the ointment, but that lasted only about two weeks and then a flare up.   In know the Dr. wants me to get to that point.  The area looks awful!  At least it is hidden by clothing.

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I have been diagnosed with LS just over a week ago. I would love to talk to people in Sussex UK who are suffering too. I understand if you don't want to be seen, but I would love the chat online.

I am scared of the future, can't find out much info on how fast changes are likely to happen. I need info & am so worried about it all. I'm 40 & have done 3 lots of IVF, hoping to do a frozen cycle in March 09 but don't know now.

Sal
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im 21 and i find it really hard and the creams dont work, no one else where i live has it so any advice would really help!!
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Hi Barb

I'm 53 with lichen sclorsis and I hate, it, too.  Not what we agreed to, huh?  I wad diagnosed about 8 years ago also, and I, too, have trouble controlling mine  -- but to answer your question, I've seen several doctors, and I find the gyne's are best.  There is such specialized skin there, the LS seems to need estrogen of some type, and the LS can have deforming effects.  I first used Clobetasol with Estrace, but be careful, as the Clobetasol is 1,000 times stronger than a regular steroid, and causes the skin to thin. I felt this made it worse, and burned more. Maybe I used too much -- you're only supposed to use a pea-size glob of it.  My gyne had me mix it (on my finger) with estrace, which helped a lot. The estrace I find soothing, and it actually helps to rebuild the skin.  I think the Clobetasol was just too strong for my delicate skin, and I find better success with Betamethasone mixed with the estrace.  Also, I find the Estring helpful, more helpful than Vagifem.  I've recently had a stroke (due to a heart defect and an unknown blood mutation, both inherited), and stopped all estrogen for a year (yikes, that's miserable...), but now I'm back.  From what I can tell, the Estrace and Estring are not absorbed into the blood strem.  I'm so much happier with the estrogen plus steroid, it's like night and day.  I tried another steroid cream, but it felt like fire -- all the time, so maybe you just have to try different treatments and find what works for YOU best.  Don't give up, and if you find a secret to success, tell us!

In finding the right gyne, I had to visit several -- my third try found an AWESOME doctor, but after four short years with her, she had the nerve to retire and enjoy her life!  Hmph!  I've since been two two others, and have found one that I can relate to and that is knowledgable about LS.  BIG difference from other gyne's.

There's a forum on Yahoo about LS -- and they have a list of doctors that others have said helped them with their LS.  Perhaps you'd want to check there?  

Good luck -- I'm looking forward to your success story.
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i find gynecologist better i felt more comfortable & felt that she had dealt with more lichen sclerosis patients.I am 38 but mine is well controlled on steroid creams which i use a couple of times a week.look forward to your golden years as i have not lost hope! jenna
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