Doctor experiences

Posted , 19 users are following.

I was diagnosed around April this year.  Looking back I can see I made some errors, but I also think my Gynecologist failed to impress upon me the gravity of this auto immune condition.  Only now in October can I see the results of this...some of my labia has fused! and quite honestly I do blame myself, but I also had no idea what I was dealing with...anyway, I thought I would ask other people to share their experiences of their doctor and their treatment....

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  • Posted

    I so have to try this baking soda remedy that I keep hearing about. Has anyone had their clit fused and then have this help "melt" it back to normal yet?  If not then I suppose I can be the guinea pig on that one. 

    I actually diagnosed myself. When the severe itchy clit started happening (a couple years after my hystorectomy and I was no longer doing hormone therapy) the only thing that gave me even the remotest bit of relief from the itching was a hot bath. But that would only stop the itching for a few hours. Eventually when I realized this wasn't going away the next thing I did  (like I often do with manyof my  medical questions) was hop online and do a bunch of research. It actually didn't take too long to figure out what I had. Once I did figure it out  I went to a walk in clinic (my doctor had retired and it is very difficult to get another one... waiting lists can be months or years long where I am) and I told them what I had. The doctor I saw that day was female and she agreed with my diagnosis and prescribed Taro-Clobetasol at 0.05% which is a topical corticosteroid cream. Within a minute of using it the itching stopped. She warned me not to use much and to use it as little as possible. So now I only use it for flare ups. When I need more I just go to the walk in clinic and ask for it. It's usually a male doctor and they don't ask much or say much. They just write the prescription. Even the female doctor I had didn't tell me much of anything about it. I had no idea about the fusion even being a possibility until I lost my clit (and incidentally the itchy clit stopped itching after it fused, now I only deal with the tearing, grey patches, painful sex, etc, etc). ....I should clarify, I didn't lose my clit, lol! It's still there, it's just that the hood has closed over it.

        I don't know of anyone else that has LS and up until I got it I didn't even know it existed. So I have no idea how well the doctors here know about this condition. 

     

    • Posted

      Some doctors do some don't.  Don't use too much clob is my experience.  I start to feel some clit again and that has been a long time ago, due to baking soda.  Patience does it, I guess. I have been very 'stitched up'. 
    • Posted

      I diagnosed myself online as well, but did nothing about it. Years later when the hood was nearly finished fusing over my clit, all hell broke loose (as I described above).

      A 50 g. tube of clobetasol should last you a year. It's better to use a tiny bit once or twice a week than to wait for a flare. I've been using it for over a year now and my flares are very mild and short-lived.

      I have no expectation that baking soda will un-fuse me. Very young women may hope for surgery or one of the new experimental treatments but after age 60 I believe atrophy and fusing are irreversible. Hanny here has had a dilation procedure to open her enough to pee.

      Watch that painful sex – that's what triggered the bad flare that finished me off for good.

    • Posted

      I recently was to by my phamasistt that clobetasol once opened as to be used within 3months after which you need to replace it, checked manufactueres leaflet and it says there , l had been using the same tube for ages.
    • Posted

      Hi Pixie, Sorry to hear what happened to you, I have just posted to hanny re experimenting with B Soda.

      I am sure I read somewhere that there is a procedure to reverse your clit closure, not sure where I read it but maybe its something you might want to look into...

      Best to you.

    • Posted

      And did you notice a difference?  I'm still using the same tube for a year or more.  Tiny little bits.
    • Posted

      Yeah, Clobetasol is prescribed for psoriasis patients who use it on such large areas of skin that they can start to have serious cortisone side effects. I guess it doesn't come in more than one size. As Hanny says, I started to experience remission in the second six months on the same tube.

      Nice try, Taro, you're not quadrupling your income from moi!

    • Posted

      Hi Hanny, l did notice it did seem to be easier to spread but apart from that ,no noteable difference. I always like to be on the safe side with medication of any kind , it may be it can be used longer l had previously used it for ages. l am lucky that being over 60 l get my prescriptions for free if l had to pay l might act differently. Just reporting what l was told , its everyones indivdual decision .
    • Posted

      Clob is clob then.  Good idea to always be cautious.  On my tube its says that it is good till 2016.  
    • Posted

      I'm an artist, too. Geez, thet's four of us right here. I think we've discovered another LS connection! I have two good artist friends who both have psoriasis.

       

    • Posted

      O no.  Hope that's it's only good for the soul, being an artist I mean.  Gosh Morrell.  Are you okay?
    • Posted

      Pixel, I had a look on Amazon and I saw your book!..Well done, it looks very impressive....  It is funny though how many of us are artistically inclined lol, didnt anna say she is an artist too?  

       

    • Posted

      Hi Guppy

      Yes I am! in fact have 2 shows coming up soon. I am an abstract artist!

    • Posted

      Thats so cool, and yet so strange that so many of us are creative!.

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