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Not sure if it's LS

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angela26870
angela26870

Hi,

I'm looking for some advice as to whether the following sounds typical of Lichen Sclerosus? I'm very worried that I've been misdiagnosed.

I've had a problem for the last few months, which started after I had a routine smear. Nothing was painful at the time, but I had extreme and intense itching afterward for about a week. I have had itching before where something has irritated my skin, but it has usually gone away by itself. Since it wasn't going away, I had a look down there and had the shock of my life. A large section of a skin adjacent to my anus, right at the top and bordering on the vulva, had turned white. I've never experienced anything like this before. There was also some whitening of the inner labia which was much less severe, and one small spot on the other side. The itching was really intense and the skin kept cracking and causing more itching. By being really strict with not touching it, eventually after about a month the cracked skin fully healed and has not come back.

I have been prescribed Dermovate to use every night for 4 weeks, 3 times a week for 4 weeks, and then twice a week for 4 weeks.

However I don't have any of the other typical symptoms that I have read a lot about. I have no pain now, and no difficulty or pain during sex. Everything is completely normal apart from the skin colour. The gynecologist who saw me put a question mark by Lichen sclerosus, suggesting she wasn't fully sure. I'm worried about putting such a potent steroid down there if that's not what it is.

Any advice would be most welcome, thanks.

0 likes, 14 replies

14 Replies

  • vickie00010
    vickie00010 angela26870

    Posted

    hi....your "situation" does sound familar to me...the itching was my first sign I had "something" going on...I was 66 years old and I was itching all day and night...I was referred by a friend (not my regular GYN) to see a doctor who specializes in "vaginal issues"....took me awhile to get an appt...he is at a very big teaching hospital in Philadelphia....I told him my "issues"...itching, feeling like my V. was sandpaper and even was uncomfortable with anything touching it (like my underwear)...sex was painful too...he had a student in the room with him when he first looked at me and asked the student "what does this appear to be she said LS..."....the doctor then said "u r correct" - he did biopsy me BUT after all the years of seeing this he knew from the white patches exactly what it was...we then discussed medications and told me this was an autoimmune disease and I would have forever - even though it could totally be controlled...I also had a yeast infection (which can be common with LS)....I was put on Estrace (because I also had atrophy - which is very common with women after menopause - the V becomes very dry) and Clobestasol (which is a heavy duty steroid - which I do not like taking for the ret of my life - but if that is what I have to do to live and be happy I will do)...I use the Estrace 2 times a week - inserted and 2 times a week topically and the Clobestasol 2 times a week topically and after just a few weeks - my V felt and looked a lot better....every case is, of course different...so my suggestion to u is make sure your doctor knows what the heck he or she is doing and trust they have had years of dealing with this (as mine has) and listen to what they say...if u r using medication and doing lots better - then u r lucky...best of luck to u...

    • angela26870
      angela26870 vickie00010

      Posted

      Thank you. I'm sorry to hear about your situation, it sounds really hard. I am taking the medication, I hope that it will prevent anything worse happening.

  • beverly52803
    beverly52803 angela26870

    Posted

    I'm not sure why you think you've been misdiagnosed. A lot of us present slightly differently re symptoms but yours and your response to the meds sounds spot on for LS. What is it you think you might have?

    I will PM the name of a very readable book that has a lot on info on vaginal and vulvar issues. If I include it here it will probably be blocked.

    • angela26870
      angela26870 beverly52803

      Posted

      Hi, thank you for your reply. I have no idea what it could be. My itching went away before I started taking the meds, so there hasn't been a response as yet that I can see. Perhaps I'm guilty of reading too much about it, as I see a lot of people have pain, scarring, atrophy, pain during sex, tightness of the skin etc. I have never had any of these, and I'm also 35 so not approaching menopause. I know anyone can have LS but I don't seem to have any of the symptoms other than white patches. I think what surprises me is the size of the white patches and how suddenly they appeared, ie over about a week, when I have never shown any symptoms before. I'm struggling to come to terms with the fact that I may have this. Is it all downhill from here? Will I need to take this steroid for the rest of my life? It's all a bit scary and incredibly sudden.

    • Guest
      Guest angela26870

      Posted

      Hi Angela,

      It is not necessarily "all downhill" from here. It is important to monitor your situation, keep it moisturized, and use some of the clobetasol that you've been prescribed. There are other topical creams you can try and can try to follow an anti-inflammatory diet to see if that works. Many ladies here take borax sitz baths or just soak a cotton ball in the borax solution and hold it on the affected site for 5 minutes. They say that lessens the soreness. Other recommendations are coconut oil, Aquaphor, Eucerin, vaseline, lidocaine gel, antihistamine gel (itching), even CBD oil. The borax can be purchased at most grocery stores in the laundry isle and you take about a quart of water with a scant teaspoon of borax and a scant half teaspoon of baking soda. Shake it until it dissolves and use that solution either as sitz bath or to dab on affected areas. Some are taking the CBD orally but I have only found that to dull the perception of soreness or pain for about an hour. Putting the CBD oil on affected skin did not help. For me the clobetasol nearly removed all the white spots within a month. That was 10 months ago and they have not really come back. One spot is paler than some other skin, but that's all. We wish you the best. Trial and error seem necessary for each person.

    • beverly52803
      beverly52803 angela26870

      Posted

      The disease may be experienced somewhat differently by younger people than with post menopausal ones (most of whom have a degree of atrophy), but even within our own groups there are wide variations. I was just as shocked as you were to be diagnosed as my only symptom was a fleeting vag itch. When I saw a gyn she saw no sign of infection...only LS! She said sometimes what is happening outside feels internal, but that wasn't the case. Eventually I got the internal situation under control, but have been using hormone cream, Nystatin, a steroid and now Tacrolimus over the past year and a half for the LS. My white areas have been minimal and I have never had external itching, however the disease seems want to spread despite following whatever protocol I've been given. My main symptom is a mildly uncomfortable buzzing feeling and a pulling feeling despite lubrication.

      I would pay particular attention to the women on here who are in your age range as they may be experiencing symptoms closer to yours. You are fortunate that you are able to have pain free sex. My gyn told me mine was most definitely caused by lack of estrogen and presumably yours is not.

      No one is enthusiastic about using steroids, but the studies show it is the most effective and not harmful if used as directed. Hope you continue to have success with your protocol.

  • sharon64989
    sharon64989 angela26870

    Posted

    Hi, it certainly sounds like LS. Everyone is different and bear in mind that what you read online/ in support groups etc will usually be the worst cases of the condition because they need the most support. You wont get people saying there's is ok and doesnt affect them because they feel bad for those that have it really bad. Keep putting the ointment on and go back to docs if anything different appears - eg lumps that dont go away, ulcers etc. Hope you are lucky and continue to only have mild symptoms (I dont have any itch or pain at the moment but dam patches are getting bigger - just got stronger ointment from docs though so hopefully that will help)

    • angela26870
      angela26870 sharon64989

      Posted

      thanks. I didn't mean to come across as insensitive, I'm very lucky that I've caught it this early. I'm new to all of it and just struggling to make sense of it. I am actually breastfeeding at the moment which causes lowered estrogen levels, so I don't know if that has triggered it. I was previously on the pill, so perhaps that regulated my estrogen levels? I will have to be forthright about continuing to be prescribed the dermovate, as the gynecologist said to come back after 3 months and if nothing has improved, they will then do a biopsy. I get the impression that if it improves then that will be the end of it in their eyes.

    • sharon64989
      sharon64989 angela26870

      Posted

      Hi, please don't think i meant you are insensitive (big hugs) i didn't mean you to feel bad, i meant that if like me you are reading and researching it lots you will only tend to hear the really bad cases and to be honest that really scares and stressed me out. i wish there were more people telling us it isn't that bad and they don't get any problems. I'm new to this too and know how worrying it is, glad we have support groups / each other to speak to but i know sometime i have to take a break from it all as it can get a bit much thinking about it all the time 😦 i hope yours get better but please look up routine maintenance as even if you dont have patches studies show you should apply the dermovate occasionally (longer term users will be able to tell you how often, but think its scaled back monthly eg use every other day, then twice a week once patches gone?? I havent got mine undercontrol yet so not sure exact and using mine twice a day) xx

  • SnappyCat
    SnappyCat angela26870

    Posted

    Angela,

    Your description sounds fairly typical. Sounds like you've been diagnosed while the symptoms are still new...and that may mean you won't have to suffer some of the really difficult symptoms. I sure hope so.

    That said, one of the risks and benefits of these forums is that you see the extremes of how the disease can present. You have the advantage of what appears to be an early diagnosis and the opportunity to jump on it and try to prevent it from progressing.

    While there are many extreme presentations, the things I would focus on right now are:

    1. After your initial course with the steroid, settle into a routine of 2 or 3 times a week...probably forever. Talk to your doc about this. The latest protocol is to use it routinely forever...this is the one thing that reduces the liklihood of cancer...so, it is very important. If your doctor resists, you need to have some medical journal info at hand. When you use it, soak in a bath for at least 20 minutes. Then get out, pat dry and rub in a pea-sized amount to the affected skin for 90 seconds.
    2. Figure out a good barrier/moisturizer...this is to keep the skin moisturized and also keep the urine and sweat, etc off the surface of the skin. It helps a great deal. I use pure vitamin e oil (no soy and no other oils), some use vaseline, coconut oil, almond oil, emu oil, or aquaphor. I played around with a variety, but I stick with vitamin e oil.
    3. Be aware that the steroid can make you prone to external yeast infections. If you feel an itch coming on and you've been applying your steroid per routine, immediately use an OTC yeast cream (or better yet, ask your doc for a prescription for a tube of nystatin just to have on hand. I end up using mine about once every 30-45 days).
    4. Be aware that the disease can make you prone to Urinary Tract Infections (UTIs). I never had one in my life before LS and had 2 within 3 mos. There are all kinds of explanations for this, but bottom line is, if you feel burning and unusual urgency when you urinate, it is probably a UTI and go to urgent care or call your doc asap. Or, better yet, buy a bottle of D-Mannose 1500mg and have it on hand...at the first hint of UTI, pop 2 capsules, then another before bed...maybe 3 or 4 in the first day or so...it will probably knock it down. Won't work if you wait too long. If you end up having to take antibiotics, then go get a good (non-refrigerated) probiotic. Take it for a few weeks after the antibiotics.

    There are all kinds of other hints, but frankly, I'd keep it simple for as long as possible. But what I wish I'd known in advance is about the yeast and UTIs...

  • vickie00010
    vickie00010 angela26870

    Posted

    GREAT advice - and I follow the same protocol and it has been working for me for years....only thing different is I was told NOT to take too many baths as this could also dry the V out a bit...

  • hannah19230
    hannah19230 angela26870

    Posted

    Hi Angela - unforunately, it does sound like LS. I'm 32, symptoms started at 30. We are lucky to catch it early. I've started to soak in Borax every night to try to prevent fusing (some women have seen fusing reverse using it, so I'm hoping I can prevent by using it).

    Steroids will have to be forever to keep it from progressing, but usually most women cut back as time goes on and if its under control. You can private message me if you want. There are some other groups on FB that are really helpful.

  • patricia22367
    patricia22367 angela26870

    Posted

    I barely had any symptoms at all apart from appearance

    little to no itching or pain, just a slight irritation that was so mild I would have ignored it otherwise but it just didn't look right

    I forgot how many times I went in and the doctor kept telling me it was nothing

    I went to a specialist and they did a biopsy on the spot, it was positive for LS

    the biopsy wasn't fun but it's the only way to know for sure, you could ask for one...

  • Cmcm1987
    Cmcm1987 angela26870

    Posted

    Hi Angela

    get a biopsy to confirm your diagnosis. i felt the same way as you so requested a biopsy for confirmation which came back positive. glad you are doing well too. best of luck!

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