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Symptomless LS but loss of parts

Posted , 34 users are following.

ChrissyC
ChrissyC

Is there ANY one else out there who has LS in the way that I do? I've taken part on several threads but have really ended up feeling more alone than ever. I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being given Dermovate they completely disappeared in around 2 years. And now my clitoris is going too. No itching, no fusion or adhesion. It is horrific to have nothing I can do simply watch helplessly as it goes. Has anyone else experienced anything like me? I feel quite the freak and so alone.

4 likes, 156 replies

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  • suedm
    suedm ChrissyC

    Posted

    I found this article that Morrell may have also read

    Abstract Feb 2007

    Goldstein AT, Burrows LJ; Surgical treatment of clitoral phimosis caused by lichen sclerosus. Am J Obstet Gynecol. 2007 Feb;196(2):126.e1-4.

    OBJECTIVE:

    The purpose of this study was to examine surgical outcomes for the correction of clitoral phimosis caused by lichen sclerosus.

    STUDY DESIGN:

    Eight women with lichen sclerosus underwent surgical repair of clitoral phimosis. They were assessed 12-36 months postoperatively by an independent research assistant. A questionnaire was used to assess the patients' perception of surgical success.

    RESULTS:

    Patients reported that they were either very satisfied (88%) or satisfied (12%) with the results of their surgery. All 4 women who had decreased clitoral sensation before surgery regained clitoral sensation and their ability to achieve orgasm.

    CONCLUSION:

    This study demonstrates that surgery for clitoral phimosis caused by lichen sclerosus can be performed to restore clitoral sensation and vulvar anatomy. There were few complications and a high degree of patient satisfaction with the procedure.

    Hope this helps you to feel a bit better and less alone. Re the loss of sensitivity try a small vibrator on the area near the clitoral hood- you may find some sensation is just waiting to be discovered! Good luck

    • ChrissyC
      ChrissyC suedm

      Posted

      Hi Sue. It's all interesting and I thank you but I don't think I have phimosis. The hood still retracts and clitoris exposed its just that the WHOLE THING is getting smaller. Very weird
    • suedm
      suedm ChrissyC

      Posted

      Hi Chrissy - i have just found the address from Dr Goldstein - fascinating and  informative. I missed the webinar but listened to the lecture withthe slides on line/ It is long - have you heard it? there are so many topic headings on this site I find it hard to keep up with who said what and where!

      The lecture will answer many of your queries about lack of overt symptoms i am sure - Do listen if you havent already- The Moderator has posted the  link so do scroll thro and try and find it - it will be removed if i give it to you here - if you havent heard it or cant find it post me privately

      Best of luck Sue

  • ChrissyC
    ChrissyC

    Posted

    Thank you everyone for replying. You've given me lots to think about.
  • kate207
    kate207 ChrissyC

    Posted

    Re Vagifem.  I was on this for a while, two seperate episondes of about three months each.  I found it caused a discharge which was very irritating, especially after a few hours sleep - I would wake up wet and sore. I also has some hair thinning and I was prone to thrush.  I know a lot of people are fine with vagifem, but be aware it can cause problems.  Now I wash with Silcocks base and this seems to keep the area soft and I use a natural lubricant I got from the health shop and feel much more comfortable. It's all about finding what suits you.
  • sky23
    sky23 ChrissyC

    Posted

    Hi ChrissyC..I have lost some of the inner lip, especially on the right side..why the right side I do not know. It is a tough call this one..
    • ChrissyC
      ChrissyC sky23

      Posted

      Hi there Sky. I'm with you there for sure. How long since having the condition has it taken for the loss to show?
  • Snflwrgrl2001
    Snflwrgrl2001 ChrissyC

    Posted

    Hi Chrissy

    I just want you to know you are never alone. I was diagnosed with LS when I was 27, but my early signs started just out of high school. I am 31 now and married. I have also been through one child birth, which was very nerve wrecking even considering having children. I am now experiencing skin loss. I've been trying to maintain it but haven't been successful. After reading your thread I will try some of the suggestions that others have made. I have also joined other groups before and felt the same way as many (alone, misunderstood, unable to tell people what's really wrong). Unlike you, I do have the occasional flare up, which can be very miserable at work when I am moving and on my feet all day. The only way I am able to calm my flare ups are buy using my ointment, then wearing loose fitting shorts only and sitting or laying down somewhere to stop the friction movement that seems to make it worse. I have tried natural Dead Sea salt in my baths but I don't think it does much other than make my skin feel soft.

    I try not to dwell on the future of my condition too much because it just overwhelms me. I can only hope that one day they will find a cure for LS and no one will ever have to live with this again.

    • ChrissyC
      ChrissyC Snflwrgrl2001

      Posted

      Goodness it's a long time since anyone contributed to this discussion - how lovely and hello. To be honest I think I still feel exactly the same as I did when I introduced this thread, still alone simply because no one else seems like me. That's because my labia and now clitoral loss are actual complete losses, they're not fused or adhered, they would physically have to grow back like an amputated limb and of course that won't ever happen. I read everything on here but rarely contribute because I can't share experience and that's why I still feel alone. At the same time I am grateful for my lack of discomfort and wouldn't of course wish anyone else to have disappearing parts just to be able to share with me. I really appreciate you reaching out to me in this way because I said I felt lonely. If you look at more recent threads on here it seems a lot of people have had some very good success with soaking the relevant area in a solution of a small amount of bicarbonate of soda in water. Apparently it has helped hugely with the discomfort AND with actually undoing some of the fusion so I'd love for it to help you too. Do look at more recent threads for the appropriate details of this and thanks again Xx
  • Snflwrgrl2001
    Snflwrgrl2001 ChrissyC

    Posted

    I will definitely try that Chrissy and thank you. I wish you the best smile
    • ChrissyC
      ChrissyC Snflwrgrl2001

      Posted

      As I do you Snflwrgrl. I realise now that you are very new on here and perhaps didn't realise you were posting on quite an old discussion. If you can't find one of the more active ones that mentions the bicarbonate treatment DO let me know here and I'll give more detail to find the info but I think you will cos it's come up lots lately. Are you UK? It's just that there is some difference in bicarbonate name as an ingredient between UK and USA (and possibly Canada and Australia) which could cause you an uncomfortable mistake if you get the wrong one so take care. X
  • Snflwrgrl2001
    Snflwrgrl2001 ChrissyC

    Posted

    I am in the US.

    Yes I am new to this site as of today actually. Ran across it through an Internet search. I thank you again for your help.

    • ChrissyC
      ChrissyC Snflwrgrl2001

      Posted

      I'm English (yes I should be asleep). Our ingredient is Bicarbonate of Soda, I think yours is baking soda but we have baking powder too which is different and definitely NOT something to apply to your nether regions. Hence the confusion as we all chat away on here not sure where we all come from or thinking to clarify so please check it out in case I'm still in error. You will find LOADS of people on here and ones who share many more similarities with you than I so you are certainly not alone either. Good luck!
  • lenep
    lenep ChrissyC

    Posted

    so now I am posting as well. God, I wish I didnt have to!

    LS - yep that's me. Clitoris half there - it takes an enourmous time to get a clitoral orgasm now - with myself or partner. Sorry for details, but Im sure Im  not alone.

    I just want to know - once its half gone/fused - can the clitoris really come back to "normal" by using the soda baths/surgery etc?

    Im using the Dermol cream twice a day and also Hope's remedy twice a day. The white is s l o w l y dissapearing, as well as the clitoris I may add.

    God, Im not finished having sex yet!

    I also dont have any symptoms as itching, burning etc. I wouldnt know I had it if I didnt look.

    • Morrell1951
      Morrell1951 lenep

      Posted

      I think Dr. Goldstein does mention in his presentation that pre-menopausal women with LS don't experience itching. All the more reason to be vigilant with the mirror.
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