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

Perineum Clob

Posted , 8 users are following.

Jess1612
Jess1612

Hi ladies I have been trying to deal with LS now for nearly a year. A lot less than some of you I appreciate and don't want to sound impatient but I take one step forward and 3 backwards that's for sure but I am trying to stay positive.

I have some active LS in my perineum area and it is really hard to get this under control.  Initially I did apply Clob there for a few weeks but stopped when I noticed the area was thinning out. Lately it has become very sore and tight and the red lesion is just not healing.  I went to Gyno today and she said to resume using the steriod in that area - not directly on the crack but around it? She said not to be afraid of the thinning but I am nervous.  I have no labia minora left but it has settled up the sides it's now just in the perinium.  I wake up in the morning and it feels good but after I have been on my feet for a couple of hours I am sore and irratated. Does anyone else have a similar experience or can reassure me to keep applying the steroid as told today? Something else contributing to my nervousness was that first Gyno did biopsy and said it wasn't LS , (had already used steroid for few weeks), 2 Gynos since are certain on presentation it is and I have had it for years.  I don't get an itch.  I really feel for everyone with this awful problem and am very grateful for this site for support and advice. 

1 like, 14 replies

14 Replies

  • norma54754
    norma54754 Jess1612

    Posted

    Hello Jess...It is so frustration this complaint.

    I think most of the medical profession give out standard advice because they don't know how else to deal with it.

    Even the steroids prescribed are not specificately for LS as there isn't one!

    We are each different and don't neccessarily respond to the same treatment.

    We can keep trying to find what's best for oneself by looking at what works for others and considering different a approach.

    I think reducing inflammation and histamine release may not cure but helps  to calm symptoms.

    I put a few suggestions in a reply tp Wigster although they are only my humble opinions. 

     

    • Jess1612
      Jess1612 norma54754

      Posted

      Hi Norma thank you for your reply.  I will read your comments.  It is just so confusing and frustrating.  I agree what works for one may not for the other.  It is alarming how many doctors give such different advice to others. I have been to 5 specialists and only 2 have had similar opinions in my case and 12 months later I still have no progress. 
    • alison54950
      alison54950 Jess1612

      Posted

      Hi Jess, I am exactly the same. 9 months later and still no relief. I'm also ok when lying down but the minute I get up I'm raw sore and stinging. I have had no success with dermovate! Saw specialist who has suggested another steroid and emulsifying treatment, she also suggested patch testing for allergies as well as bloods being taken for any other auto immune disease . I am at my wits end as I feel they are constantly guessing how to treat and like you one minute it's LS the next vulvodynia!
    • Jess1612
      Jess1612 alison54950

      Posted

      Hi Alison what a relief to hear someone exactly the same, although I don't mean this unkindly!  The fist Gyno I saw was the one to give me the steriod then 4 weeks later did the biopsy,  then said the same as you Vulvodynia!  He was very unsympathic so I moved on. I like the new Gyno I am seeing but it does seem just as challenging for her as a specialist to treat. Mid keep hopeful of a magic answer but that's not happening.  I am 55 and postmenopausal.  Until my first ever UTI in November last year I have never had an issue down there so this has been a shock and challenging. Are you a similar age group?  Do you mind me asking how it all started for you and have you lost your labia minora - mine are completely absorbed. 
  • janniey
    janniey Jess1612

    Posted

    An anti-inflammatory diet does seem to help me. I also need to add in more nutrients I feel. 
    • alison54950
      alison54950 janniey

      Posted

      Hi I am 52 post menopausal. I thought I had cystitis then Irvine infections, got loads of antibiotics, I never had problems before. Feels never ending with no answers!
  • lynne1945
    lynne1945 Jess1612

    Posted

    Jess, your story could be mine right down to the length of time since my diagnosis. I had realised my labia minora had almost disappeared but thought it was age (I am 70) and I had quite a bit of dryness but never had itch and never do still. My diagnosis, after my initial flare up came as a huge shock and since then I have had two flare ups and was given mometasone, half strength Clob but after my most recent flare 6 weeks ago I have seen the doctor, a gynaecologist and am waiting an appointment with a dermatologist and have been " upgraded" to  Clob. Nothing stops the burning in one red lesion which never gets smaller and never gets bigger and never changes. 

    One thing I often wonder when reading these posts is how you ladies know if your skin is thinning? I peer into a mirror daily applying my cream and moisturiser and except for the lesion I can't tell about thinning. Maybe it's my eyesight ! 

    I wish you well Jess in your search for relief from this bloody awful problem, as I wish for all of us. I too am grateful for support here as I know not a soul with this condition and never heard of it before a year ago. 

    • Jess1612
      Jess1612 lynne1945

      Posted

      Hi Lynne thanks for your reply. Yes you seem very similar to me.  I also saw 2 dermatologists.  1 said LS and one not?  It just wears you down as to what to use, where to put it and are you really treating the right complaint? I had no smptons but 2 experienced Gynos have told me on presentation I have old LS and probably non symptonmatic until the UTI.  Then again the more you use down there the more you can confuse symptons or damage the area more with lotions and potions.  In my early days one lady on here gave me some good advice "STOP USING EVERYTHING"  except the steriod.  This was helpful and got my head a not clearer then I introduced other help carefully.  Best for me is nothing other than the steroid and keeping clean and dry. As to the thinning ai can just see that it looks like tissue paper soft and still whtenyetnImwas told to night by Gyno keep putting the steroid on just keep of the cracked area ?? 

       

  • karen41728
    karen41728 Jess1612

    Posted

    Just wondering wether anyone has ever had abnormal cells years ago down there after a smear test only I did and now have lichen planus Xx
  • caroline16811
    caroline16811 Jess1612

    Posted

    Hi Jess.

    Like you I have no Labia minors left and has tearing of the perineum all the time no sooner had it healed but id have another nick again. Drove me crazy and was so depressing. But since I started reading this forum I did 3 things I want doing before. I patted with water after every wee then dried then applied moisturiser. And applied steroid rubbing in for 90 seconds after 2 weeks or so it was string enough that as I apply that or moisturizer I just apply gentle pressure and stretch the perineum. It is now more normal and died not tear like it did. I know we are all different but this had definitely not thinned the the skin for me quite the opposite, it had strengthened it. I hope it clears it for you too. it's a horrible, worrying depressing condition. I also check with mirror daily. I'd I had done this before I probably would not have been so dense and lost my labia. Just thought it "felt" a little bit on down there till saw the consultant and he said about the fusing. I was clueless ! I could kick myself !!!!. Let us know how you get on Jess.

    • Jess1612
      Jess1612 caroline16811

      Posted

      Hi Caroline thanks for sharing your regime with me.  I will give this a go.  I presume you are washing and denying with toilet paper?  What moisturiser are your using.  Thanks 
    • caroline16811
      caroline16811 Jess1612

      Posted

      Yes that's right, I make a pad of the paper, soak it then just dab all the area. Then dab with dry paper. Because I have skin fusion in the urethra area I do not wee straight down, more a spray than a stream. However that has improved slightly too. I use Aveeno body wash - perfectly safe with LS ( dermatologist recommended it ) and Aveeno moisturiser and Aqueous Ointment as a barrier.

      Did your Dr day why you had to use the dreams in that order ?

  • lynne1945
    lynne1945 Jess1612

    Posted

    Jess, Did either of the gynaecologists do a biopsy? Surely they are conclusive? I have had two and they both came back LS although I have none of the white thin skin nor patches and never have. I actually asked the gynaecologist last time whether there could be a mistake and she said no. I only have a couple of lesions, one is larger, on the sides of my vaginal opening and the shrinking labia. She said what is your worry and I said cancer but she told me to put it out of my mind, the biopsy would have shown it. So it seems we all are a little different with our symptoms. As well as the Clob I use a tiny amount oestrogen on a tight bit of scar tissue at the under vagina entrance, according to doctor as I can't really tell. Maybe I need a magnifying mirror! 

    But anyway, hope you had a biopsy for certainty! 

    All the best

    Lynne 

    • Jess1612
      Jess1612 lynne1945

      Posted

      Hi Lynne yes I had a biopsy done by my first Gyno. This came back non-specific inflammation so his diagnosis was Vuvlodynia and he basically told me to go home and suck it up, that I would get better but he couldn't tell me when and that there was nothing he could give me. I was pretty upset at the time and I didn't find him very sympathic at all ao moved on!  What I have since been told is that if a biopsy is done after the use of a steriod for a few weeks, which was the case for me, then it can be hard to recognise. I have since seen 2 new Gynos and 1 Dermo who is convinced that on presentation I have LS - one said "old LS". I guess I could ask for another biopsy but don't really want to go through that again and like you the biopsy was not taken from a very active part at the time.  I have read heaps on both LS and Vulvodynia now and I personally agree with the LS diagnosis based on my symptons. Thanks for your reply and I hope you continue to get better as well.  
Back to top

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.