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No diagnosis! 😔

Posted , 13 users are following.

clair86
clair86

Hello, only joined this group yesterday but I need help. Back in March I noticed my skin around my 'downstairs bits!' Had changed to a pale/grey colour! I went to my gp and she said that it looked like LS she prescribed me a steroid cream and referred me to a dermatologist. Last Friday I finally got to see her but because the cream was working and the colour had returned, I was showing no signs of LS! She told me to stop using the cream, which I did but within 2 days the itching feeling had returned and I'm now back using the cream!!! I was hoping they would do a biopsy so I could have a diagnosis! Instead it feels like I've just been left to deal with this by myself!! LS sounds scary!! Shall I keep using the cream? I need advice! Thank you!

2 likes, 32 replies

32 Replies

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  • yvonne19574
    yvonne19574 clair86

    Posted

    Hi Claire,

    so sorry your symptoms are coming back that often happens unfortunately.My advice is to go back again to the doctors.The dermatologist should know that this condition has flare ups and then calms down getting the right balance of treatment is really hard at times.You can always request a biopsy to ease your mind .Some doctors are quick to help others quite frankly have little knowledge or understanding of  LS.a friend as recommended a cream you can obtain now in Britain but comes from the USA .Its a cream with very natural products in it.I don't know much about it

    and I don't know if the moderator would allow me to divulge it on this site.?

    perhaps I'm allowed on Facebook? It is a friends recommendation and everyone's body is unique and responds individually.

    • Chrisy
      Chrisy yvonne19574

      Posted

      I would appreciate a personal message with the name of this cream. I think it would be okay.  We all mention Dermovate and Clobetasol ointment and other creams so I don't think it would be a problem.

       

  • Morrell1951
    Morrell1951 clair86

    Posted

    Clair, as Crisy pointed out, you didn't say what cream you're using. It sould be an ultrapotent topical steroid such as Clobetasol, but if you google topical steroid potency chart you'll see the list.

    If you've been using creams and you're asymptomatic a biopsy won't register LS. That is probably why the derm didn't do one. If your prescription has lots of repeats you're OK. I would ask my GP for a referral to a gynae, because you need to go to a colposcopy clinic annually, to stay on top of any tiny beginning of bad cells. This is why a diagnosis is good – we won't be one of the small percentage of (mostly long-neglected) LS patients who get squamous cell carcinoma.

    A vulva clinic is ideal, but there aren't very many. Do watch DR. Goldstein's presentation – your total LS education. It's on the top 'pinned' topic – New to LS – Start Here.

    • clair86
      clair86 Morrell1951

      Posted

      Hi, I'm using eumovate. My Drs are really not that helpful and I am worried that without a definite diagnosis they will stop the cream. The Dr who runs my surgery (not the Dr who referred me) is penny pinching!! The dermatologist said that if I have a flare up in the next 6 months to take pics and make an appointment. But I'm still using the cream daily because I don't how best to reduce it. Put it on every other day and gradually try to wean myself off of it or use less until I'm using next to nothing. I wasn't told where to put it either, currently I'm just putting it on the places that itch!
    • kathleen65757
      kathleen65757 clair86

      Posted

      I think it is important you have good people looking after you and you have full confidence in them. Can you use a mirror to inspect for yourself? White spots, itch can help you pinpoint the areas that need the ointment. These questions should be answered by your specialists and you may have to find the right doctors to guide you. I am lucky as I attend a special clinic at the Mercy hospital in Melbourne and there I have specialists who are well qualified to deal with LS and other vulva conditions.
    • clair86
      clair86 kathleen65757

      Posted

      Hi Kathleen, yeah I check in a mirror every day. All the white has gone. Like you all have said il need to speak to the Dr who referred me the first time and hopefully sooner rather than later il get a diagnosis. I'm from the UK so unless you have private health care, which I don't. Everything has to be done through the NHS and it's not always easy!!
    • Chrisy
      Chrisy clair86

      Posted

      Clair you have a right in the uk to a second opinion.  You can ask to be referred to a specialist to ensure that you definately have the condition and are being treated correctly.  You will most likely be referred back to your GP afterwards as the NHS is cutting back but you should be entitled to proper care and that includes putting your mind at rest and a proper diagnosis. 

      I would return to my GP and voice my concerns and ask for a referral to a dermatologist that deals with vulval conditions. Not a gynaechologist. Diagnosis is very important for this condition. Good Luck.

    • Morrell1951
      Morrell1951 clair86

      Posted

      Clair, it sounds like you could cut back to every third day if it's pretty clear. That's what I do for twice a week, just because it's easier to keep track. Your tube will probably last till you go back in six months. Don't use too much. More is not better.
    • kathleen65757
      kathleen65757 Morrell1951

      Posted

      I have been told to use a tube of Advantan fatty ointment each month. They have allowed for even more. Most nights I apply the Advantan. I have it on quite a large area though including around the anus. You made me laugh Morrell with your new boyfriend and preparing for that! You have a happy positive outlook.

       

    • Morrell1951
      Morrell1951 kathleen65757

      Posted

      Happy to oblige, Kathleen. I've been a pretty cynical grump about sex on here for the last year or so. I see on the potency chart that Advantan is much less potent than Clobetasol, so that's why you can use so much. Maybe your doctor prescribed it precisely because you have a large affected area.
    • dani2590
      dani2590 Morrell1951

      Posted

      Morrell or Kathleen, can you please tell me what class steroid Advantan is. I tried looking it up but couldn't find it. It goes under the name of methylpredisone I think. I've been on the fatty ointment before bed daily for just over 2 months now. I'm obsessing over the fact that I'm not putting enough/putting too much. I told my doctor I apply a thin layer and she said that's fine but I'm still not confident. Will have to run this past her when I see her in 3 weeks.

      I'm noticing tiny white spots appearing, like the end of a sharpened pencil, they are that small. I felt discouraged as I've been using the Advantan and expected no changes to occur. Hopefully the LS isn't currently running rampant.

    • kathleen65757
      kathleen65757 dani2590

      Posted

      I am fairly generous with the Advantan Fatty ointment as from experience if I am not it does not do the trick. I guess I use about a third of a teaspoon at least. I think it is one down in class from the dermovate etc. the ointment is better than the cream simply because it is absorbed more effectively than a cream. I use it most nights. 
    • Morrell1951
      Morrell1951 dani2590

      Posted

      Dani, I looked it up yesterday, pretty hard to find, but it's quite a bit less potent than Dermovate/clobetasol – 50-100 times more potent than hydrocortisone (over-the-counter stuff) where Clob is 600 times. I also came across something saying that patients are far more likely to use too little of whatever they're prescribed than too much. (Everybody hears 'steroid' and freaks out about side effects, which are non-existent at this tiny dosage.) I saw a photo showing a line of cream as long as the first joint in the index finger – about 1/2". That's at least six times as much as I use when applying Dermovate, or now, tacrolimus (Protopic).
    • dani2590
      dani2590 Morrell1951

      Posted

      Very interesting. Thanks for that Morrell. Will have to make sure I'm using enough without going over the top of course.

      I wonder if it's strong enough to keep the LS at bay. Trusting that she knows what's best but will run this past her next time I see her.

    • Morrell1951
      Morrell1951 dani2590

      Posted

      It probably has to do with having a fairly large affected area. But definitely pose the question. It's possible some doctors believe that's the best prescription. It's kind of the same as long as you use enough.
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