Exposing clitoris again

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Hello, 

I am 25 years old and I am pretty sure that I have had LS go undiagnosed since I was a child. I have my clitoris fully fused and very little of my labia minora left. I was wondering if there is any way to get my clitoris back other than surgery? I am currently living in the UK but I am from Canada. Any advice would be extremely helpful. 

Thank You, 

Nicole

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14 Replies

  • Posted

    Are you using a steroid ointment?
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    • Posted

      Yes I have just started using it. I am still unsure if i am applying it correctly. I usually use a pea sized amount and put it on the white patches, on my clitoral hood that has fused over and on my remaining labia minora lips. Is this correct?
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    • Posted

      Yup, that's right.

      Have you talked with your gynaecologist about surgery? As far as I know, the probelm with surgery is that the cutting itself sets up the Koebner effect – a flare-up reaction to any skin trauma in psoriasis and LS patients.

      The disfigurement we suffer is from adhesions – which are a big problem in other groups as well. The trick would be to keep what surgery opened up from scarring over. Dr. Goldstein sounds confident that using Dermovate religiously would keep that from happening. He does point out that there are at least four types of LS, so if you have a more aggressive form, this scarring could happen fast. Just my amateur thoughts. Who knows what they can do with laser, etc.?

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    • Posted

      How long has it been fused? I've had two adhesions release in the six months since I was switched from Dermovate to Protopic. If it hasn't been long, it's possible that with gentle stretching you could GRADUALLY separate the 'seam'. That's what I did when my vaginal opening had gotten suddenly smaller when my perineum pleated into an adhesion. Our Hanny was down to a pinhole opening and in hospital had a dilation procedure to open it up. She continues to use a set of dilators and is able to have intercourse.
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    • Posted

      It'll never be 'perfect' though.  The clitoris adhesians are hard to 'unravel'.  I'm in the midst of that now.  Imagine, however, how far I have come.  Just the clitoris area left.  But something is intervering with the urethra, which looks like a bladder infection but isn't.  More doctor visits to go.  That top part is a tricky area.
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    • Posted

      I believe that Dr.Goldstein had said that a sutgery is recommended and it will not cause a flare up ( I watched his seminar today ) He said it is a simple- 25 minute procedure. My question is where can I get this surgery performed....so many questions with this disease!

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    • Posted

      I can't post any links, but I just Googled 'surgery clitoral adhesions' and got lots of stuff. Trials – pretty small ones – going back to the early nineties. There's a doctor, Professor Ostrzenksi, who advertises cosmetic surgery around the vulva including 'excavating' a buried clitoris. Unfortunately, because there's been a trend toward women (who presumably have more money than brains) having surgery just to 'improve' the appearance of their labia and clitoral hood. So, I guess surgeons who specialize in this are busy doing commercial work. If you google him you'll probably get the site I'm reading.
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  • Posted

    Newly diagnosed. It happened so fast! The clitoris is buried. I have LS. Punch biopsy done. I had no symptoms, no itching maybe some redness and a few fissures that I attributed to menopause, thinning of vulvar skin. I was given Premarin cream to help alleviate that. MD never mentioned LS until I pointed out clitoral disappearance! Then Bx was done. I have a auto immune problem. It's an undifferentiated connective tissue disease. I've read that LS can be associated with auto immune issues. Has anyone heard of this? Very very upsetting. I'm so on top of my healthcare....but this was unforeseen. I'd never heard of it before. Surgery seems radical and painful. Has anyone had success with that? 

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    • Posted

      I think many of us here had never heard of LS before their diagnosis.   Some have to cope with other auto immune issues as well.
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    • Posted

      I'm not in favour of surgery.  I went for a dilation procedure at one time.  Worked out well.

      ?Best results I had with baking soda baths and rinses, later borax baths and rinses.  Gradually all unfused. 

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    • Posted

      Really, it all unfused just with baths? Did it take long? And do you know if most of LS pts have an auto immune disease? I'm just thinking that had I stayed on a drug that was prescribed by rheumatologist it may not have occurred. It was d/c'd by MD.

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    • Posted

      Forgot how long it took, strange.  I was determined though totally fused up.  If this is only your clitoris, it won't be easy but chances are you get it back to almost normal. 

      ?If you use baking soda in a bath - one third of a cup.  For borax I would use half that.  After every bathroom visit I rinsed with three pinches of baking soda or borax in a Perin bottle, desolved well.  Deb dry. 

      ?And I stayed away from added sugar and tried to stay in control of any stress.  Those were the main things. 

      ?At present I just do maintenance - baths every other day,  twice a day rinsing after bathroom visit and apply a small amount of coconut oil.  Plus I have to keep doing the dilation, every few days now.  More frequent in the beginning.

      ?There is much more info you can find on this forum about the things I mentioned.  Different opinions as well.  But this was what worked for me.  Using the most gentle methods. 

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  • Posted

    I am terrified that within a month my clitoris fused! Just like that! I have been diagnosed with LS and it is aggressive! It is such a vulnerable place to have an issue. I am trying the prescribed creams, estrogen cream and cortezone cream but have read about the borax cure--the site I came across gave a recipe for taking it internally. As my clitoris is all but almost gone I am feeling desperate. I have out some borax in my baths but nothing or working and I am in shock! What an awful autoimmune disease. I am scheduled to work with a acupuncturist and try to get my immune system functioning better. Any other suggestions? I am considering plastic surgery if nothing else works...I figure I may need to have repeated surgeries unless I get to the bottom of what LS really is and why it affects the genital region. I will post my progress on this page in the hopes of sharing with others who have been given this bizarre diagnosis. 
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