1. Community
  2. Women's health
  3. Lichen Sclerosus

Is anyone getting treatment in the U.K.?

Posted , 36 users are following.

LSpatient
LSpatient

Most posts here seem to be from America. Is there anyone out there getting treatment in the U.K.? If so where and what? Are there any specialists?

1 like, 81 replies

81 Replies

Prev Next
  • ann67814
    ann67814 LSpatient

    Posted

    Hi there I am in the UK, there are lots of us on here. You

    will find that overnight posts are usually from the states UK people message in the day and evening. I don't see a specialist at the moment, but if you are in the NW there is a Vulval Dermatologist in the area. If you Google vulval dermatologist and your area you should get lists up. Good luck

  • kathryn07219
    kathryn07219 LSpatient

    Posted

    I am in the UK - South West - and have had LS and LP for 4 years.  The treatment I have had has not been very useful and I have been discharged from all clinics as there is no more that can be done unless I want to try systemic acitretin.  I don't as the side effects are pretty horrendous, it may not work, it does not reverse the damage and, once you stop taking it, it will probably start up again.  The "maintenance" twice weekly steroid cream for vulval treatment no longer appears to have any effect and the best I can do is apply castor oil whenever I get an itch/pain to try and stop adhesions occurring.  I have tried very many things over the years and, for me, the castor oil has been the most useful.  Diet does not appear to play in part in my case, although I appreciate it does for others.  I'm afraid it's a case of try everything and see what suits you.  I'm afraid the best advice I can give, and it's difficult to follow, is:  do your best and try and just get on with your life - don't let LS take over.  

     

    • Bridge_of_Sighs
      Bridge_of_Sighs kathryn07219

      Posted

      I am in the South West too. Have you tried the Borax? It's been good for me. Also there is a specialist Vulval Dermatology clinic at St Michels in Bristol where LS is the most common condition they treat. I also have a doctor who is a dermatologist and sees a lot of it. She says that each one of her patients feels isolated but it is SO common, she says people have no idea because they don't talk about it. Thank goodness for this forum!

    • Taylor1946
      Taylor1946 Bridge_of_Sighs

      Posted

      I am from the Bristol Area and did not realise there is a Vulva Dermatology Clinic in Bristol. I have had the condition for about two and a half years and seen a consultant at the Bupa Spire who is very nice but does not specialise  in LS and has suggested me having a z plasty which I am very nervous about - I would very much like a second opinion before I proceed
  • sue162
    sue162 LSpatient

    Posted

    I’m from Yorkshire and I was biopsied and discharged.  NO aftercare just left.  I went to the GUM clinic and they check me six monthly now.  Since my last check in July severe aggulation has occurred, my next check is in two weeks,  the GUM clinic have been great compared to the gynae dept at hospital.  You can google vulvar skin specialists in UK and see if one is in your area.  The Spire have specialists as well.  I learned a lot from this forum more than the hospital.  
  • sarb73328
    sarb73328 LSpatient

    Posted

    Hi I am in SE, Hampshire/West Sussex border and was diagnosed by my GP which was then confirmed by gynae who is cancer specialist. My GP is treating me at the moment and has said that dermatologists and gynaes have same level of knowledge of LS in our area, so I am guessing I will be referred back to gynae if things worsen. At the moment I am using prescribed betnovate steroid cream, epaderm to wash, amitriptyline and oestrogen cream (I am 64, post menopausal), and for myself unprescribed: emuaid, emu oil or coconut oil and borax! Basically anything I can throw at it that helps. I am interested to read about Zinc and Castor Oil on this thread too.

    What I find frustrating is that there is no support for the psychological effects of this. No sort of understanding of how devastating it is to watch yourself deform so drastically as well as having the worry of possibly developing cancer in time.  It seems we are all told the same thing: it is incurable , steroid cream is the treatment to keep it managed - so go away and get on with it.

    If anyone knows of a specialist in my area I would be pleased to hear from them. This forum is so helpful. 

  • fran24104
    fran24104 LSpatient

    Posted

    I am in the South West too and get my treatment at Derriford Hospital.  I have a 6 month follow-up appointment later this month.  If there are any questions you think I should be asking please let me know.  I seem to have it under control at the moment with clob and borax.
  • Bridge_of_Sighs
    Bridge_of_Sighs LSpatient

    Posted

    My brilliant dermatology doctor with lots of LS experience has left my GP practice, but I have discovered that in September she is going to be a locum and do some private practice in Bristol. I will share any details as soon as I know them. I can hugely recommend her.
  • Bridge_of_Sighs
    Bridge_of_Sighs LSpatient

    Posted

    Also, Bristolians, any interest in trying to set up a support group here? Someone asked in another thread.
    • Taylor1946
      Taylor1946 Bridge_of_Sighs

      Posted

      That would be great, I have been searching for consultants in Bristol, Bath or Taunton area specialising in LS for a second opinion regarding surgery but unfortunately the closest place I can find is Birmingham. I would be so pleased if I could see a dermatologist who has a good knowledge and could perhaps point me in the right direction or give her opinion. Tbh my Doctors practice did not have a clue and have been useless. I had been visiting the practice complaining of problems and having examinations at least 3 years before I was referred to a gynaecologist and no mention of LS was mentioned
    • sandrapopcorn.1
      sandrapopcorn.1 Bridge_of_Sighs

      Posted

      I would be very interested in a support group. Has one been set up? If so, I'd like to join.

      If not, I'm happy to put the energy into getting a group together.

      I also like many of the post, feeling like I'm operating alone and in the dark. I have just discovered Caster Oil and it is helping to calm the area and feel soothed, unlike a dozen other things I have tried over the years.

      At the same time, I'm learning how different all our bodies are and what works for one, may not work for another.

      There is comfort and empowerment in sharing what we know, and supporting each other.

  • Bridge_of_Sighs
    Bridge_of_Sighs LSpatient

    Posted

    St Michaels Hospital in Bristol has a Vulval Dermatology clinic, Could you get a referral there?

    I went there three times, yearly for a check-up. They say the most common issue they see is LS. Their advice is standard, Clob etc. I saw a woman doctor first who was brisk and efficient but not very sympathetic, then a man who I tried to explain how devastating if felt and he wasn't interested, until I said that sex was off the menu and he suddenly sat up and said 'well that IS a problem,' (boo hiss! I thought he was more concerned about my husband than me) and then lastly I saw a man who was ok, but said that I didn't have it badly and I could come off the 'to watch' list and be discharged if I wanted. I said 'no' but seem to be off the list anyway. If I'd seen the same doctor all the time, she'd have known that I was in a terrible state when i first attended and have dramatically improved but, ho hum we are talking about consultants here... I did want to be on the watch list because I've gone off-piste with treatment, but in the meantime I found my fab GP who specialises in dermatology and is very open minded. I will post when I know when and where she will be practicing when I find out.

    So there is a specialist clinic, but my experience has been a bit mixed. My feeling is to stay in the loop though, go if you can get the referral, just for the supervision. And who knows they might have a brilliant doctor that I haven't seen yet...

    Hope this helps

    Bridge

  • Bridge_of_Sighs
    Bridge_of_Sighs LSpatient

    Posted

    Just seen that I'm repeating myself, apologies, always rushing when on here, didn't read whole thread...

  • jules38777
    jules38777 LSpatient

    Posted

    Hi everyone I’m in Milton Keynes. Was diagnosed with LS 23 years ago (I’m 53 now) after years of ‘thrush’ and a fused clitoral hood. Since then using  Trimovate it’s been in remission with no deterioration until now. 

    I’ve recently had a lot of personal stress and the LS has flared up with a vengeance. I was given Dermovate - could this be making it worse? Nothing seems to work. My symptoms are feeling like my vulva is on fire and a dragging feeling in my urethra. No itching. Area looks red with white patches. Noticed tonight a few tiny ulcers both sides of inner labia.  I feel so worried and upset. I tried the aloe Vera gel and turmeric oil but it burns like hell. Using Trimovate and Sudocrem as a barrier now.  Have ordered Emuaid, should arrive tomorrow. Can’t get Borax in the U.K. so ordered Borax substitute. I feel really desperate and so worried about the sinister implications of this. Had swabs done by doctor to test for infection but all came back clear. Have appointment with locum on Tuesday as my dr can’t see me til August!!!! I can’t sleep. I just want to be free of this constant pain. Do you think I should insist on some antibiotics? Please help. 

    • sarb73328
      sarb73328 jules38777

      Posted

      I really believe stress is one of the main triggers for LS to flare. My worst symptoms were when I was going through an awful time in my life. That's over and with all the help from here and using Betnovate I have gone into remission. So there is hope.

      Don't use Borax substitute, get the borax tetraborate from Ebay as Fran says. It is well worth using as it is calming and soothing as well as every other benefit described by others on here. I also found emu aid fantastic, but it stopped working for me as I was using it all the time. Try calendula nappy cream for barrier - I think it's more gentle than sudacrem. And organic coconut oil also soothes.

    • Taylor1946
      Taylor1946 jules38777

      Posted

      So sorry for your situation and the young age you developed this horrible condition. You are my Daughters age and I feel so sorry for you. I’m 72 and have had it for 2 years and I get very down with it but at least it is in the latter years of my life. I am at the moment trying borax and it is early days but it is soothing. I got mine from Amazon U.K. 100%pure borax sodium tetraborate decahydrate 200g it is cheap and worth giving it a go. I use every morning and evening before bed in between I use coconut oil from Holland and Barrett or espaderm cream from the doctor. I really wish you the best of luck, it’s horrible. It took ages for mine to be diagnosed, I really don’t think most GPs know much about the condition 😢

       

    • jules38777
      jules38777 sarb73328

      Posted

      Thank you for taking the time to reply I really do appreciate it. Glad to hear that your life is back on track now and so is your LS.

      I’ve ordered the Borax from EBay now, and will ask my dr for Betnovate and will also try calendula. I am literally going to try everything everyone recommends! 

    • jules38777
      jules38777 Taylor1946

      Posted

      I was lucky that I got diagnosed with LS back in 1995 when I think even less was know about it. I think I’ve had LS since I was 21 and it took 9 years until diagnosis. Mainly because I was so young it wasn’t something they would consider. It was only when I had structural changes that they realised. I was referred to Prof McLean at the Royal Free in London. He got me in remission for all these years and I had no further deterioration and I could almost forget that I had LS.  Ive always had urethra pain but it’s something I just learned to live with.  So it’s devastating that now at a time when I’m stressed enough as it is I’m dealing with this too.

      I managed to see GP today (got an emergency appointment) he’s referring me and gave me strong pain killers and a different emollient. He thinks I’ve been over doing the Dermovate. I’m going to get some coconut oil too. Thanks for your kindness, I really hope you can get your LS into remission. It doesn’t matter when you get this horrible affliction its just as hard at any age. Take care and thanks again 😘

    • Bridge_of_Sighs
      Bridge_of_Sighs Taylor1946

      Posted

      Epaderm is great, and you can get it over the counter at Boots or any pharmacy. Get the ointment, that comes in a tub. It looks a bit like Vaseline. 500g is about £12. Or a small pot is £6. The cream isn't as good and the thing that makes it white can irritate some people.  I use it instead of soap, carry a small tub in my bag to 'wash' with when when I'm out and about. It's soothing when you're itching... just go buy some. Longer term you can start to experiment with the suggestions on here, but I expect you want some relief asap.

      Good luck

      Bridge

Back to top
Prev Next

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.