Dealing with LS, Have some questions.
Posted , 10 users are following.
Hello, My name is Susan, I'm 45 and I've been dealing with LS for about a year now. Just a quick bio, it started with irregular periods and one little white spot on my labia. Never knew about the white spot, hubby never said anything. He just thought it was a pigment change. Then maybe around 6 months my vulva was white and so itchy and sex was little uncomfortable. Called the gyno, couldn't get in for a month and a half. That was bad, done alot of research and figured it was LS. Tried vinegar, that was painful. Used olive oil and coconut oil, that helped alot. Even tried cortisone cream, didnt work. Finally got in to see my gyno, after a month of hell. He said it looked like LS ( no figure 8)and prescribed clob cream. So I used how he said after a few days the itching and burning went away. Went back after a month , he said its getting better. So he said to only use it when symptoms come back. Still have a very great freaky sex life .Now to the questions. My labia and surroundings are still white, no itching or burning and nothing missing or shrinking. Will the white ever go away? Should I still use my clob cream till the white goes away? I use estrogen cream down there also. Haven't used clob cream in about 4 months. So confused on what to do. If the white was gone it would look normal. Thank you, sorry to ramble, its nice to talk to people who deal with this.
0 likes, 17 replies
fiona08095 susan18011
Posted
Hi Susan - i was diagnosed about 2 1/2 years ago and also had the white spots and white areas etc. My gynae instructed me to keep using the steroid cream / ointment morning and night daily for a long period of time - it was about at least 6-9 months and the frequency dropped back to 3 times a week twice a say. Initially I was concerned that it would damage my skin but he said not - for this condition I had to follow his instructions. Its important to have it well controlled before cutting back in the application. Have you trued also using Emuaid - I find it absolutely wonderful and it has helped me heaps.
susan18011 fiona08095
Posted
Hello Fiona, Yes used emuaid, didn't work, sent it back. I use emu oil sometimes. My gyno gave me the directions to use clob cream, probably used it for three months or so, while going back for a visit every month. His concern was you can't use clob cream everyday for months and months without skin thinning. The last time I went back he said it was looking better ( still white) and only use clob when needed (itch and burn). Well still white and nothing else. I tried the clob again a while back for a few weeks (no symptoms), just to get rid of the white spots. it started hurting so I stopped using it. So now, if I ever have that slight itch or burn, I grab the clob. It goes away within a few minutes of applying it. For me it's the white that bothers me nothing else. The clob cream makes me tear easily, that's why I use the estrogen cream. I just want to know if the white is bad or the itching and burning is the culprit. My husband want me (us) to try the borax treatment. Another thing my thyroid is good, I may have an overactive immune system .
SnappyCat susan18011
Posted
Your doc is telling you the old protocol. Nowdays you are to use your Clob every week. Most get down to 2x or 3x a week...but use it often enough that you eliminate symptoms. The reason is that it has been discovered that using this protocol reduces the incidence of cancer. There are several medical studies to support this. You should discuss with your doctor.
susan18011 SnappyCat
Posted
Thank you SnappyCat, I'll definitely talk to my doctor when my next visit comes up. So should start using clob cream again? 2 to 3 times a week? when I started using again to get rid of the white, I used it everyday for a few weeks. it started burning and getting sore, so I quit using it. In that time the white never budged at all. it took a week to recover from the clob usage, had to use my estrogen cream, to get my elasticity back.
SnappyCat susan18011
Edited
My doc says: Use the steroid (I use a different one, but also high potency) 2x a day until your symptoms go away and skin looks normal. Then back off to 1x a day. If all is well after 1 week of 1x a day, then back off to every other day for 2 wks. If all is ok...back off to M/W/F. If still ok after 2 wks, try M/F. Continue this way until/unless there is a flare or other symptom return...then repeat.
You might also ask your doc if he/she would look into the use of topical "protopic" in addition to the steroid. You might find it beneficial, but the added plus is that it would push your doc to do a bit of research to update/refresh knowledge on the topic.
susan18011 SnappyCat
Edited
Thanks again SnappyCat, I'm going to start the clobetasol tonight. To get rid of the white patches.
beverly52803 susan18011
Posted
Susan, for what it's worth I have gone back to using the milder steroid Triamcinilone which I used initially because my case was not severe. Because buzzing started I was put on clobetasol. However, both the clob and the protopic prescribed later by a dermatologist felt too strong and irritating.
I wouldn't say I feel totally normal, but mildly uncomfortable at times. I think trial & error is involved. This is my 2nd year with LS.
susan18011 beverly52803
Posted
Thank you Beverly, I will definitely mention the Triamcinilone, my next appointment. I feel perfectly normal down there, just the whitening. Once every 2 to 3 months or more, I might have an itch. Grab the clobetasol and it goes away. Usually around period time it get very itchy . Which is usually a month or more late. The doctor got me scared about the clobetasol, I used for a 3 month routine. All the other symptoms went away, except the white patches. He didn't seem to concerned about it, only to stop using the clob as soon as possible. If not, he's said I would look like an 80yr old woman down there.
beverly52803 susan18011
Posted
What country are you in? If it's the UK the med strength steroid may have a different name.
susan18011 beverly52803
Posted
Ohio, USA. Something I don't understand, the white is bad or the itching and burning is. All I have is the white. No itching or burning or any other discomfort. I only use the clobetasol when it itches, only in one spot. which around period time, but it's never that bad. So if the white goes away, it's in remission? or just the itching goes away, that remission . Sorry if I'm being confusing. My gynecologist doesn't seem to know much.
beverly52803 susan18011
Edited
I can't really answer your question. All I can tell you is what my gyn said to me which was to put the steroid on any area that was white. I interpreted that as the white indicated active disease. I have no itching, never have and was diagnosed based upon having the white areas. At that point I was prescribed the med strength steroid. There was very little white to begin with and most disappeared with the use of the steroid. The gyn said I was responding very well. However, the slight buzzing began about 6 months later. The gyn saw no signs of LS and said nothing re the buzzing indicating disease. The buzzing eventually increased and I increased the use of the steroid after speaking with the dr by phone. Several months later when I was able to see her she was able to see white on the clitoris. I had to use a magnifying mirror to see it. At that point I was put on Clob.
I think some women have reported that their skin color never returns to normal. That has always confused me. Not all doctors are on the same page with this disease because I think women have such varied symptoms. If you think your gyn doesn't know much about it look for a gyn or dermatologist who specializes in vulval skin disease. Tough to find.
Guest susan18011
Edited
Does any gynecologist know "much" about this? After the 7 I've seen, I have about 6 different answers to my questions or no answer.....I would definitely get the clob back and try it for at least 2 weeks but also keep the area moist. Maybe when they get done with this virus they spend some time on this disease that has plagued women for so long.
fiona08095 susan18011
Edited
Regardless whether one us able to control symptoms Lichen Sclerosis is a progressive incurable disease - hence the importance of continuing with the steroid cream or ointment even if you have it under control. The steroid ointment / cream prevents the skin and hardening that happens in the progress of the disease. My gynae told me that for LS the ongoing treatment and continued use of cream/ointment is perfectly ok with LS as it helps keep the skin soft.
Guest susan18011
Edited
Hi Susan,
The white spots I had were one on either side of the perineum and after 1 month of the 2x a day clob, they went away. Then I used tacrolimus at Dr. No 2's order but that only took away the redness caused by the clobetasol. Dr. No 2 would not see me so I was left on my own. That's when the pain started, after 1 month of clob and then 1 month of tac, the area was pronounced "normal" but was anything but. I urge you to get a biopsy. Mine was not that bad. Sort of like some novocaine at the dentist. Find out what your skin is doing.
Also Eucerin was helpful as was cold vaseline. Be well. biscuit
susan18011
Edited
Update: Hello all, I've been using the clob for over a couple of weeks now, no change. I use it at night before bed and use estrogen cream in morning. the white area is still white, no better no worse. I have no itching or burning or anything, everything feels great. I don't know if I should keep using clob or not, or try something else. Thyroid good (on meds for that), always very moist down there, no
pain or issues during or after sex. Don't know what to do, any suggestions? Everything seems normal and functions correctly, just the white patches. I may experiment with cbd oil and cbd lube and also borax. thanks again for all of you advice.