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Help! Reabsorption

Posted , 7 users are following.

Loupp
Loupp

I was diagnosed at christmas after persistant itching folllwing the birth of my son 18 months ago. When I saw my consultant she showed me that 75% of one side of my labia had been reabsorbed - I hadn't noticed. Since then I have been using dermovate for the 2 week every day/2 week every other day/ 2 week twice a week regime but am still itching on and off.

I had a good look below and literally both sides of my labia seem to have been reabsorbed, there is just the hood left over my clitoris. I am absolutely beside myself, its uncomfortable when I sit now as I have no 'padding' left and I am driving myself around the bend reading about stenosis and losing my clitoris - I'm only 40! I have an appt with my consultant again next week to discuss but please can anyone give me some reassurance or recommend anything to stop this? Can they do fat transfer or some sort of refashioning? Thanks

0 likes, 9 replies

9 Replies

  • justine89448
    justine89448 Loupp

    Posted

    Hi Im older than you, 50 i found my padding came back a fare bit when i went on hrt

  • Rowley1
    Rowley1 Loupp

    Posted

    I am in my late 60s and have no inner labia. This was making me very sore. My Consultant told me to use Diprobase on the days i wasn't using Dermovate. This really helps but use a natural panty liner. Hope this is helpful for you.

    Tina

  • Nancy_K_B
    Nancy_K_B Loupp

    Posted

    Hi there Lou,

    we're glad you found us, all o us have found so much help from each other. Most of us have found that this disease is very individual beyond some commonalities.

    I was so "affronted" that my body would "do such a thing to me" ha, that I spent several months last year totally researching this situation. The biggest help was finding one proven research article that identified LS as an autoimmune condition. that let me really go to town on this. I always look for patterns and some sort of sequence. Anyway, please have hope and knowing that things can get better.

    What we REALLY don't want is for things to get worse.

    please do read my two articles this first one outlines what i found out about autoimmune conditions in general.. The second one is what i put together as a nutritional support protocol to manage LS regardless of whether we choose to use steroids or not.

    These have definitely helped me to be comfortable. If you read each nutritional supplement you'll find that a few of them specifically address collagen formation and other such things for building tissue etc . Oh and in case your doctor hasn't mentioned it... we ALL know that the first and primary way to reducing itching is going of all forms of sugar 100% in the beginning.

    Blessing and much love to you and your family.. Nancy age 73 in Asheville, NC USA

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

    https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963

  • jessica68771
    jessica68771 Loupp

    Posted

    Hi Loupp,

    I am sorry you are having a difficult time. My advice to you is to get your dr to refer you to a good dermatologist that knows about the etiology of LS. I drove myself nuts on these sites looking for things to do that would help me or stop it (partially because I had to wait 3 months to get in with my dermatologist). I was using the clob everyday and it was still progressing, which was terrifying because from what I had read, clob was all they had to treat this disease. I tried all the natural stuff, cutting sugar, cutting gluten, emu oild, high grade lavendar, high quality probiotics, vit B, Magnesium, vit D, borax etc. I spent a small fortune. And while I know they help lots of people they didn't help me, things were rapidly going white and itching and the skin was just sooo tight.

    When I finally got into my dermatologist he was soooo reassuring! He told me that with treatment, the goal is to have no symptoms. he acknowledged that the clob is not working for me like it should. He said in 95% of people he sees with this condition, the clob will control it but not in my case. He put me on low dose methotrexate (which is an immune suppressant, so not everyone can take it) combined with pulsed clob 3x's a week. I have been on it for three weeks now and everything down there has gone right back to normal. No itching, its all pink, the skin is elastic. Sex is great. The labia that were absorbed are still gone, but that doesn't bother me. It is really crazy the changes that this med makes. I am not on it forever, he said just a few months to knock the disease into remission and then I can come off. The listed side effects of the med can be a bit alarming, but so far I don't have any of them aside from a bit of nausea the day I take it (you only take methotrexate once a week). If you can, please see a specialist. My derm said that the key to managing this condition is having a physician that understands it and treats it aggressively right off the bat, and that the vast majority of his patients with this disease lead totally normal lives (and sex lives. Losing that was a big fear of mine)

    • Nancy_K_B
      Nancy_K_B jessica68771

      Posted

      Jessica - THANKS for such an in depth write up. though my supplements and aloe etc have taken are of any itching or splitting, I still have white plaque down there - the thought that I can someday get my pink back is very hopeful. just as soon as I can get one of these meds paid for. I"m gonna check again.

      So, by any chance do you think dermatologists are more knowledgeable about LS than gynecologists?

    • jessica68771
      jessica68771 Nancy_K_B

      Posted

      Hi Nancy,

      I am happy to give an in depth write up because I want people to know that clob isn't the end of the road, and that there are many other treatment avenues despite what google says haha. I was beside myself with worry before I had my appointment.

      For me, I feel that a dermatologist was the right way to go as LS really is a problem with the skin. My derm is amazing, he also has a specialty as an internist, so I am very confident that he understands this disease. He explained that LS is a cousin, of sorts, to psoriasis. So the treatment I am on is one that would typically be used on someone with psoriasis or rheumatoid arthritis. It has worked just as he said it would! I was nervous at first because when I read the side effects they sounded bad, but what I was dealing with was also awful so for me it was worth the risk. So far I haven't had any side effects aside from a bit of nausea on the day I take my methotrexare.

    • Nancy_K_B
      Nancy_K_B jessica68771

      Posted

      Jessica - THANKS again for your insights. I read up on the methotrexare. sounds very helpful for some. Your great experience with a DERMatologist should be better known for us LS peeps.

      Can you please tell/remind us why you couldn't take the clob? IF in your new doc's experience 95% of LS sufferers are fine on the Clobestol - what are the conditions under which it does not work? I've never taken it because it has been too expensive on my social security here in the U.S.But when I can, I think I better try the Clob first because of the potential side effects of Methotrexate esp with hypothyroid also.

      I wonder if the women here who can't do clob for adverse reactions have been told about the Methotrexate? what a great resolution you've had! In any caes you've convinced me to go to a dermatologist - smiles!

    • jessica68771
      jessica68771 Nancy_K_B

      Posted

      Hi Nancy,

      I can (and do) use clob. I didn't have any bad reactions to it, The problem was that it just stopped working. I was doing a daily application, and the disease was still progressing.. ie: the white was spreading, itch was persistent. There was no thinning, thankfully.

      When I had my appointment he said that in most cases the Clob will suppress it until the LS goes into remission, but with me that wasn't happening. This is where the methotrexate came in. He said that while I will still pulse the clob (3x a week) initially, it is no longer the workhorse that is keeping the LS in check. The methotrexate is now doing that from inside, and the clob is just a helper. As I have more time on methotrexate, I will decrease the clob application as per his instructions.

  • justine89448
    justine89448 Loupp

    Posted

    There is also a ointment called protopic which us immune suppressing if the Clob is not working

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