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Newly diagnosed

Posted , 13 users are following.

janet62990
janet62990

hi I was diagnosed only two weeks ago in the uk. i was told by my gp to put strong steroid cream on my bits and my bum and to go back in two weeks.  i went back on friday and was given stuff to book an appappointment with a vulva dermatologist.  I was told to keep up with once a day application of the steroid cream in the meantime.  I have managed to book an appointment but not until the beginning of March!   Should I still be using the strong cream daily until then? If my condition improves surely I don't need to apply daily?  My bum is sore already. Any uk sufferers out there?  Berkshire area would love to meet up and discuss and compare? 

0 likes, 20 replies

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  • liz53953
    liz53953 janet62990

    Posted

    Hi is the steroid cream working? I had hydrocortisone worked the first time then the next time it made me worse. Am booked in with bulval clinic in January . March seems a long time to wait can't you get in any sooner? 
  • bearmama
    bearmama janet62990

    Posted

    Hey, I've had LS for 3 years now with my diagnosis 2 years ago.  I'm 34. I use the strong cortisone (clobetasol in canada) a few times a week.  Some weeks are better than others but some are worse & those weeks I'm applying it more often.  I would stick with what your GP says & once you have your appointment with the vulvar dermatologist go back often so they can notice changes to the arcitecture of the vulva.  You'll likely have to use strong steroids for the rest of your life 1+ times a week.  Sorry.  It's a terrible condition, I can't lie.
    • janet62990
      janet62990 bearmama

      Posted

      I can't see my bits and my bum so can't decide if they are good or bad! The itching has stopped but as said bum cheeks now a bit sore  is this because of strong steroid cream ? My vulva definitely changed even doc noticed.  Does this mean I have got badly progressive ls?
  • Chrisy
    Chrisy janet62990

    Posted

    Hi Janet,  A good place to start is the post, New to Ls - start here.  It is a pinned post at the beginning of all threads.  In that post you will find a link to a Webinair that you will find very interesting and informative.  It is a speach by a specialist that will describe the condition and the best treatment for you.  It lasts an hour but it will be worth spending so you know what you are dealing with. So sorry you have joined our club. Not a club I would recommend.
  • Vibrant_Health
    Vibrant_Health janet62990

    Posted

    WHILE WAITING, if you wish to be more self reliant, what works for me is to:

    view postings of others and educate yourself as much as possible and see which of the 'routines' other have been successful in managing their conditions i.e. 

    reducing/eliminating sugar from your diet and increasing more organic, alkaline foods among many.  After you gain a little more perspective, essentially, what it boils down to is orchestrating one's life and make the necessary changes as is possible.  By the time you get to meet with the next professional, you will be equipped to have a more meaningful conversation, coming from a place of being informed.  Finding a solution becomes a joint effort.  PLUS, if you gain some useful insight and share with us, all of us also benefit.  

    Hope this helps and wishing you a joyful holiday season.

  • Hazel1962
    Hazel1962 janet62990

    Posted

    Hi Janet, I am in the uk but in Newcastle. Been suffering LS for a lot of years! Would recommend you use the steroid ointment daily for a couple of weeks, if things improve start using it twice weekly until your appointment. My dermatologist advised this, whenever I get a flare up I use it every day then back to twice weekly. I have recently been prescribed Dermovate with an anti fungal additive as I have been having problems around my bum, it seems to work better in that area that straight forward Dermovate. Get an emollient to wash with something like Hydromol and moisturise regularly with emu oil or coconut oil. It all helps and this forum is a great place for info. 
  • deb09833
    deb09833 janet62990

    Posted

    Hi Janet. I've been using steroid since 2009 regularly and managed to go from twice a day down to every second day. The important thing is to get LS under control first. The lovely ladies on this site have recommended bi carb diluted with water either spray between bathroom stops or bath. I have been going pretty good with this. I use Sudacrem on my bum when it gets red and inflamed. Hope this helps 
    • janet62990
      janet62990 deb09833

      Posted

      Thanks will try sudacrem ! Have lots from bringing up kids !
  • Guppy007
    Guppy007 janet62990

    Posted

    Hi, sorry you had to join us.

     I'm English but I'm not living in the UK.  

    What are your symptoms like, have you any fusion? Is your undercarriage patchy and white?  I ask this because I don't think you need to be putting it on everyday until MARCH! I personally think that is too much.  Everyone is different though, in your shoes I would apply it every day to start with, maybe for a couple of weeks, then every other day, and finally twice a week...this is only my opinion, and I am sure others may have a different view, and of course it all depends on the severity of your Lichen Schlerosus.

     

    • janet62990
      janet62990 Guppy007

      Posted

      Hi thanks for your reply. I can't see but apparently I have White patches on bum and bits.  Husband has been applying cream to the bum and I have been doing my bits.  Doctor confirmed my vulva fusing at the top near my clitoris. I agree daily application until March excessive.  I'm gonna cut down to every other day for now. Itching has stopped but now a bit sore on bum and weeing ! Is that due to too much cream ,
    • Chrisy
      Chrisy janet62990

      Posted

      Try soaking with bicarb 1/3 cup in a full bath or a pinch in a sitzbath or spray bottle.  Helps calm things down.  Use the cream daily until the soreness calms down then reduce to every other day.  After a few weeks of that try to reduce to twice a week and then once a week.  In between and after every pee moisturise the area well.  I use Epaderm others use Hydramol, coconut oil and other types of suitable moisturiser with no perfume.  Whatever you find suits you best.  If you are sore then you need to treat.  The dermovate is important to help prevent further fusing.  Don't be afraid to use it.  Watch the hour long webinair link on the New to Ls - start here post.  It really will help you understand and control your condition as best you can.  Good luck
    • janet62990
      janet62990 Chrisy

      Posted

      Does the dermovate stop the diease progressing or does it just stop the symptoms?  Does applying the cream actually stop things or just stop the symptoms?  
    • val82862
      val82862 Guppy007

      Posted

      Yes I am just like you,I used the cream like you everything is ok now,Iwas told if I have any problems just restart again,I have had LS for a year now and yes things have fused together a little but consultant is not consurned at this time.hope you get on ok
    • Chrisy
      Chrisy janet62990

      Posted

      Hi,  The dermovate helps to heal things and to thin the very thick skin that drys and cracks causing all the problems. I think it is the dry skin that looks white and shiny (pearlised). Moisturising definately helps with keeping things calm and to help stop the fusing which is caused by two areas that are raw sticking together and then while healing they stick together. That is as simple as I can describe it as I understand the condition.
  • val82862
    val82862 janet62990

    Posted

    Hi I have had ls for a year now had a biopsy to confirm ,and used the cream as I was told to ,all clear now,but if I gave a flare up I have to start again with the treatment.i live in the south.
    • janet62990
      janet62990

      Posted

      If you are in reasonable drive time would love to meet up . I am near reading. I would love to set up a uk awareness group.vwho heard of this before we were diagnosed ? 
    • suedm
      suedm janet62990

      Posted

      Hi Janet - i am in the UK too and  too far West from Reading, if you want to meet up with others in your area why not  ask your GP to put up a poster and suggest a meet up  withthe practice nurse - or perhaps a your  consultants clinic and have a clinic nurse leading the discussion - to get things moving in the first place.

      This is how i went to a support group in Birmingham some years ago - I had to move away but we did have some really helpful discussions and even went to ann summers to discuss the use of diloes and vibrators. they were very gentle and supportive- a private appointment had been made by the sexual therapist on our behalf. good luck in your quest - it WILL be worth it if you can get it going Best Wishes Sue DM

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