Is this Lichen Sclerosis

Posted , 7 users are following.

Hi,

I'm new to the forum. Several months ago i went to my local GU clinic. I have genital herpes and felt it was getting worse. When i was being examined the consultant said the anal soreness was actually LS. He gave me Dermavate and a leaflet about LS and said to use it twice daily for a month. Because it didn't feel too bad i just used it occasionally and it wasn't an issue for me. Fast forward to 3 weeks ago and the anal soreness is agony. There's no itchiness or white patches but red sore patches around the anus. So i started the Dermavate regime. I'm under the care of a dermatologist for a hair problem so i asked him and he said it wasn't LS because it would be itchy. I've read though that not everyone gets itching. He said to stop using the Dermavate. I'm really confused and in a lot of pain. The soreness is getting worse. It's definitely not the herpes because the consultant swabbed the sore area and it's come back negative. I just wondered what people thought. I just want the pain to go.

Thanks

Joanne

0 likes, 18 replies

18 Replies

  • Posted

    youre right, not everyone gets itching. personally i'd see your GP or dermatologist for a biopsy to confirm and use the steroid. even if its not LS, the steroid will reduce inflammation

    • Posted

      Thanks for the reply. Will keep on using the steroid. Won't be able to have a biopsy though. I have surgery for a previous illness years ago and I have nerve pain in that area too. It's flared up massively. Wondered if the LS had flared it up since its been controlled for many years. But definitely couldn't have a biopsy

  • Posted

    Joanne,

    I'm having the same issue. Although mine is blisters from the anus to the tailbone, and there is a fissure at the anal area. I do not have itching, either. I also have herpes, but have not had an outbreak in years. Although my dermatologist said it didn't look like LS because there were no white patches, there were many people on this forum that answered my recent post indicating that they have the same thing, so I know it is the LS. I'm not familiar with dermavate, I use the clob ointment and it helps. This area has been more persistent than the vaginal area in clearing up, though. I am sorry you are in so much pain.

    • Posted

      Hi Christine,

      Dermovate is the other name for clob i think. I'll carry on using it in the hope it settles.

  • Posted

    I have been dealing with an LS diagnosis only since this summer, but from what I can tell from reading posts people have very different symptoms. Can you find a specialist in it? I have a gyn who just yesterday told me that she sees several patients a day with it. That's what you want. Someone who has experience.

    I had no itch on the skin or sores so didn't realize I had the problem until I was examined. Thought any discomfort was from atrophy after menopause.

    Most of the symptoms have gone from consistent use of the steroid cream.

    Hope you get proper care and are over this soon.

    • Posted

      The consultant who diagnosed it at the GU clinic gave me a leaflet about the condition and the steroid so they must see it there pretty regularly. From the replies on here im inclined to believe him now rather than the dermatologist. Thank goodness for forums like this. Ive got lots if health problems and the most reliable and helpful info has come from people with the actual problems rather than the medical people.

  • Posted

    I was diagnosed after several biopsies by my current Gyno but my previous one insisted it was herpes but never got any diagnosis from his biopsies. I knew it wasnt herpes but I had lesions which can be confused with Herpes. I had no white patches or itchiness either. I had sores and red rawness. Yet I do have LS so symptoms dont have to be text book.

    • Posted

      With all my health probs ive always been in the rare or non typical category. Its just when you get 2 different people telling you different things you don't know what to think. The rawness hurts like hell. I feel more confident now i've read through all the replies on here

  • Posted

    HI Joanne, the Anus is where I originally realized something was wrong and got an appt. It was itching at first. but later the more common symptom in the anal area has been the pain of fissures that feel like you are sh..ting glass shards (oddly I thought is was something I had eaten for some time before I realized it was otherwise.

    I've never used clobesatol or dermavate in the lat 9 months, but have been very grateful to have learned about Aloe Vera gel. Also I've felt better from using zinc oxide diaper ointment in that area.

    But nothing is going to work if we don't lay off SUGAR - totally! I've only recently gone back to even having fruit. after some months. Guppy on here taught us that. but I've not gone back to white sugar. I've been using a bit of Xylitol from the health food store on my oatmeal. It tastes just the same! smiles.

    • Posted

      Nancy,

      I had a somewhat milder problem with BMs. The discomfort would pass quickly. Thought it might be an extension of atrophy but have since been diagnosed with LS in genital & anal areas by gyn . Used Triamcinolone 0.1% steroid ointment. The anal area healed very quickly; no further discomfort with BMs. Edges of labia still show slight signs, but doc says it's almost all gone. I use so very little of the ointment the tube is sure to last for years.

      Also using hormone cream for the atrophy since the beginning of summer. It has totally reversed (if that's the right term) so it's a little difficult for me to distinguish what was causing any discomfort, though I wasn't having much. The only problem I was aware of (that brought me to the gyn) was a fleeting issue with BV. Ironically that still comes & goes. Am about to try mixing metrogel with the hormone cream to see if that solves the problem.

      Did the steroid cream you used not heal the fissures? Are you using the gels and ointment to maintain the area or have the fissures returned?

      I do wonder if we older women have a different version of LS. Gyn says in my case the lack of estrogen brought it on. Just told me yesterday she sees several women with it every day!

    • Posted

      Hi Nancy,

      Yeah I've been reading about the sugar trigger. I'm don't have that much sugar anyway in my diet so its pretty easy for me to cut it out completely. The only fruit i can eat are bananas but they're supposed to be pretty high in sugar so have stopped them for now. I'll try anything if it's gonna help.

    • Posted

      good evening, Beverly, OH! i got better just fine with using Vitamin D3 and other supplement autoimmune protocol that I studied up on and wrote about. plus the gel or other emollients. I was just writing to let Joanne know that LS doesn't present all the same to everyone and that it's solvable without steroids but ya gotta get off the sugar - and dairy too.

      Thanks for letting me know how the hormone cream helped you. I probably should figure that one out. ..

    • Posted

      Nancy, what other supplements were you taking besides the D3 for autoimmune?

    • Posted

      HI Christine, Perhaps you've seen me post quite a few times my list that I developed from intense googling. I take them ALL - as I can afford it. but there are a few that I've dome to know I can't run out of if I want to stay comfortable - starting with D3 . Just click on my name and you'll be able to scroll down on the right to find the files I've uploaded. Blessings,

  • Posted

    Hi Joanne, it sounds like LS to me and I think you should listen to your original doc that gave you the diagnosis. Sometimes the steroid cream can aggravate certain areas and so I would stop the steroid cream and try using Desitin baby cream, or any other baby bottom cream. With LS we are prone to sores/lesions and so it is possible thats why you thought your herpes was getting worse, it could be that you had LS sores as well as the herpes sores.

    Anyway, unfortunately flares are often linked to diet. Many women have found that by cutting out dairy, sugar and sometimes gluten they start to feel immediately better. The main problem for many of us though is Sugar, so try to cut back on that and you will see a difference. With LS we all have individual areas of sensitivity when we flare and it sounds like yours is your anus, thats just the way it happens sometimes.

    • Posted

      Hi Guppy,

      Do you mean to put the baby cream directly on the sores?

      My diet is pretty healthy. Can't eat much due to severe reflux so don't have gluten, no alcohol and very low sugar, although am completely cutting that out now. Unfortunately can't cut dairy out. I hope the no sugar makes a difference.

    • Posted

      Hi Joanne, yes, put it directly on the sores, it soothes and helps and is less painful than the steroid, but you only want to be doing this for a couple of days or so because after that you will want to try to dry them out by bathing, drying with a hairdryer and not putting anything else on them. This works well for some people.

      Your diet sounds very healthy.

    • Posted

      Thanks Guppy. Will try that first then and see if it helps.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.