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

LS fusing

Posted , 15 users are following.

sheila49099
sheila49099

I have suffered for 33 years with this disease.  I am 76 yrs old. LS is an autoimmune disease and a health person told me for a true autoimmuneO

problem is that you had to have 3.  I have arthritis, Ls and thyroid.  Jus over a year ago I had to have the thyroid removed (cancer) . That is okay now. But listen to this, The unbearable constant burning itch has all but disappeared.  There is till some very mild discomfort around the anus.  The fusing was so complete that I lost the clitorus first and than the labia minora and the labia majora was starting to disappear.  But with the regular use of coconut oil and spraying after bathroom use with water and baking soda I now have rather normal looking labia and normal colour.  i was white, gray, purple and bumps.  Ony the clitorus has not been uncovered but sensation is still there.   I am just very slightly  white at the entrance to the vagina both front and back.  I wish i had Known about these treatments years ago. 

3 likes, 63 replies

63 Replies

Prev Next
  • Morrell1951
    Morrell1951 sheila49099

    Posted

    Sheila, I concur that on top of our prescription ointment, using the baking soda rinse and moisturising with coconut oil have really helped me. My clitoris is still sealed over, but the skin over it is fine and supple, and I do have sensation. I have a narrow whitish strip across the length of my perimeum and no day-to-day no discomfort at all. My vaginal introitus is small (two fingers, not three) and hardened, so any penetration at all will cause a small tear that stings. Whether I decide to go ahead with sex again now that I've taken two whole years of treatment and celibacy to get my LS to this point, remains to be seen.
    • debbiesettle
      debbiesettle Morrell1951

      Posted

      Thanks for the info I will definable look at getting coconut oil, do you buy it from a high street company? I'm hoping I won't loose my clitoris now I'm using the ointment. Did the detereation or progression which ever way you look at it stop when you started using medication?
    • sheila49099
      sheila49099 Morrell1951

      Posted

      Good Mornong Morrell -  I am also not sexually active at the moment and may not be again , however I did invest in dialaters.  I bought them on a site for womens medical needs and they had several price ranges. I  can not imagine why someone would pay exhorbitant prices for these things.  I chose to buy the ones in the $50.00 range. There are 5 sizes, from very small to a normal size penis.  I am able to use the second largest but I must confess I am not too diligent at its use to try and get the biggest one to enter for me.. 
    • Morrell1951
      Morrell1951 debbiesettle

      Posted

      Debbie, the progression of my LS definitely stopped with the use of Clobetasol. I don't even think my introitus is really smaller than it was two years ago, because I tore every time we had sex. I'm afraid that it's all calm now only because I've abstained.
    • Morrell1951
      Morrell1951 sheila49099

      Posted

      Sheila, I experimented yesterday morning (I've never been much for self-pleasuring) and I was pretty pleased that my response was strong. But a small amount of pulling with those two fingers – there's a short diagonal fold of scar right at the back of the opening and it tore, just a 1/4" buttonhole that stung a little. Only later when I blotted after a pee did I realize I was bleeding a bit. I did a baking soda rinse and used lots of coconut oil and it's healed today. The thing is, that skin that tears is crap skin. And because of the ointment, it's not a thick layer of it. I used to tear so deep without even doing anything.

      I seem to have a new boyfriend and I'm not at all looking forward to having this conversation with him and will hold off as long as possible until it feels comfortable to break the news. I feel a bit sneaky. He's not tall, so I'm crossing my fingers he's small. wink

    • Morrell1951
      Morrell1951

      Posted

      You know it probably was more like 1/8" because I used a magnifying mirror!
    • Morrell1951
      Morrell1951 sheila49099

      Posted

      I just sent him a Full Disclosure email. I was only going to get super anxious and break out in psoriasis if I didn't clear the air. His sister is visiting and from the little he's said about her, I figured if I gave him free rein to blab, he'd probably talk it over with her now. And that's what he's doing.
    • sheila49099
      sheila49099 Morrell1951

      Posted

      That's great!  I bet you feel like a load is off your shoulders.......

      regardless of the outcome.   Can I be so bold as to ask you to keep me posted?

  • Morrell1951
    Morrell1951 sheila49099

    Posted

    But the case can stay in the cooler for quite a while. I'm in no rush (lesson learned after X marriages).
    • karen41728
      karen41728 Morrell1951

      Posted

      Hi morrell

      Same here I'm in the middle of a divorce now and certainly won't be going near another man, do you know what started the lichens have you ever had a problem with smear tests only I had treatment years ago for abnormal cells and when I think about it that is when this started X

      Karen

    • Morrell1951
      Morrell1951 karen41728

      Posted

      Nah. I'm 63 and have had LS since I was 22. I had bad cells on my cervix and two conizations in my mid-forties. So, no cause & effect.
    • karen41728
      karen41728 Morrell1951

      Posted

      Did you find the LS worse after the colizations morrell and do you have it anywhere else, I'm 57 and after my leep it aggravated it
    • Morrell1951
      Morrell1951 karen41728

      Posted

      Because I never had a diagnosis of LS it's hard to say. But I maybe it was worse, because my sex life dwindled. I might have had some fusing over my clitoris in my late forties (plus perimenopause made it so I was bleeding half the time) so sex wasn't as satisfying as it had been. I don't have LS anywhere else.
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.