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LS scarring- any advice please!

Posted , 9 users are following.

Spindlefingers
Spindlefingers

Hi there. I was diagnosed with severe LS aged 19. I had two and a half years of awful blistering, splitting, lesions that took weeks to heal but thankfully, it seems to have calmed down lately and I havent had a flare-up for a few months (although small tears still occur frequently). I am 22 now and unfortunately, the years of blistering have left me with virtually nothing 'down there' as most of the skin simply came away and now it is mostly hard scar tissue with the opening only maybe two centimetres wide. Obviously this makes any kind of intercourse impossible, not to mention exceedingly painful to even attempt. I have been with my partner for 4 years now, they have seen me through the worst of my condition but it has left us totally without a sex life, something we both miss and I feel incredibly guilty for. I would love to know if anyone in a similar position has had any surgery or other treatment relating to this and, if so, has it helped? I would be grateful for any advice as this is almost ruining my life!

0 likes, 10 replies

10 Replies

  • Morrell1951
    Morrell1951 Spindlefingers

    Posted

    Oh, Spindle, you were dealt a bad hand! We knew there were levels and versions of LS, but yours sounds the worst. At your age the experiemental work a few doctors are doing with stem cells and platelets would be worth a try. Historically, the standard wisdom on LS is that any surgery triggers the Koebner effect – our skin flares up whenever it's traumatized. This can be anything from the friction of a bra strap to sex to surgery. If you Google Dr. Francesco Casabona, he is the Italian who does this expensive procedure. Apparently there are some private clinics in the UK trying it, too.

    What have you been doing for treatment? We have lots of things we share here that we do in addition to prescribed ointment.

    • Spindlefingers
      Spindlefingers Morrell1951

      Posted

      Thankyou for the advice on surgery. I know it risks making things worse but im willing to try almost anything to get at least some kind of sex life back. I cant stand the thought of celibacy for the rest of my life and its certainly not something I want to inflict on my partner as they dont deserve it and we had such a good time in the bedroom before all this.

      As for treatment I have found very little that works for me. I use clobestol twice-three times a week, more if I feel itchy or irritated. I only wear loose cotton underwear and always wear loose bottoms at home. I use aqueous cream at least once a day and also as a soap substitute. I use sensitive washing powder and also tried cutting sugar from my diet but that seemed to make no difference so I didnt deny myself that any more haha! Apart from that I cant think what else to try. The clobestol has (I think) kept the outbreaks at bay while the aqueous cream limits the damage that comes from tearing but apart from that the whole of my 'downstairs' is just one big mass of fused scar tissue. I have no inner labia at all and as I mentioned my opening is incredibly small. I would love it if someone had some advice on any way to soften the tissue even a little as I hope this would relax/widen the opening enough for at least some semblence of intercourse.

    • justine89448
      justine89448 Spindlefingers

      Posted

      Have you heard of the mona Lisa touch treatment that may help. It's a laser treatment where do you live X
    • Spindlefingers
      Spindlefingers justine89448

      Posted

      No I haven't Justine. What sort of treatment is it? I mean what else is it used for/ success rates ect? Thankyou so much for your suggestions smile it helps so much finally talking to people who understand what im going through. I live in the midlands in the UK
    • claire12259
      claire12259 Spindlefingers

      Posted

      Hiya, you obviously have the worst kind of LS, what an absolute nightmare for you. I was nothing near as bad as you - just irritation, itchiness, white skin etc. I found changing my diet to sugar (I know you have tried)/ dairy / gluten free greatly relieved my symptoms to the extent (touch wood) all is normal down there! I also take Celedrin which is an anti inflamatory. Hope you find something that works for you xxx
    • justine89448
      justine89448 Spindlefingers

      Posted

      I haven't had it done myself but there are a few women on here that have. It regenerates the skin a bit like if you had laser treatment for wrinkles. If you put a message out I'm sure some ladies will tell you about it. Also I think the Royal Free hospital in London is looking into Ls a bit more. There are also some ladies that see a number of docters at one time in vulva clinics do you go to one of them. You have your whole life ahead of you and hopefully a very happy sex life. You will get lots of info on here good luck xxx
    • justine89448
      justine89448

      Posted

      I forgot to say about a cream called protopic. That really helped me. It's not a steroid it's an immune blocker stops your body attacking itself. It's dies have side affects for me it was burning but bearable for 24 hours then fine. It also has risks a bit like the pill. But I spoke to my doc about it and his seemed to think that the negative reports on it were not proven. You would need to talk to your docters and do some research yourself xx
  • patricia86334
    patricia86334 Spindlefingers

    Posted

    I just read your post and have to write if only to say I am so sorry you have such pain and suffering.  And you are so young.  However, you will find some one or some thing to  help you here!  I remember reading on some one's post, that the dr. advised a group of ladies with LS to go to a sex shop and buy dildos...so funny!  Starting with a very small size and lots of emu oil or coconut oil or another organic oil with no additives, gradually see if you can expand the opening.  Do you think that may work in your case?  You mention scar tissue, so you have to be so careful...but I am only making a suggestion in case you hadn't thought of that already.  Maybe you have.  I know I asked my daughter (she is 30) to go to one of those nasty shops in the mall that sells all sorts of icky stuff and buy a dildo for me!!  I had already explained the LS etc...I think it was easier for her to buy such a thing because it was not for herself (we are a pretty introverted lot)  Anyway, I haven't even had the thing for 6 mos as we had a house fire and all our possessions have been packed up and put in storage till we get back home...but I still keep on explanding the opening with my fingers (I am blushing as I write this, but I think it is worth it if you benefit even a little bit)

    I just want you to know there are things you can do and things that will help you. Please read all the posts on this site.  All of us are wishing you the best!!

  • kathryn07219
    kathryn07219 Spindlefingers

    Posted

    Hi,  I am in the UK too.  I have mentioned before on this website that my opening is also very minimal and sex is impossible.  My gynae (at North Devon Hospital) suggested a procedure called the Fentons Procedure.  This involves making an incision from the opening down through a little of the perineum and then stitching it - not stitching the cut just made but rather at 90 degree angles either side (very difficult to explain in words but easy to draw!).  This increases the size of the opening.  I have not agreed to have this done yet, purely and simply because my LS is still a little active and I am afraid that the skin won't heal properly.  As you are also in the UK I would strongly suggest you mention this procedure to your consultant who will be able to tell you, draw for you, what it involves and whether it is appropriate for you.

    I wish you much health and happiness and would be very interested to hear further if you do go ahead and have the procedure.

  • UlliS
    UlliS Spindlefingers

    Posted

    I am so sorry to hear about your suffering. This is such a horrible disease but do not give up. I strongly suggest that you should consider surgery to widen the opening. I went through a vestibulectomy due to LS pain and scarring in my early twenties with a very good result. A skilled surgeon should be able to help you. In my case, they covered the affected area with healthy mucosa from the inside of the vagina. Now, many years later, I am again suffering from scar tissue, mainly due to damage after a vaginal birth. Therefore, I am planning a new operation in the close future to widen the opening. My dermatologist thinks that the potential Koebner effect will be controllable with clobetasol and/or local steroid injections. I have come to the conclusion that I have nothing to loose trying. From your post, it seems like you unfortunately are in the same position. Until then, try to use dilators to stretch as much as possible without hurting yourself. The best way is too buy a dilator kit on the internet in different sizes. I wish you all the best. Take care.
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