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Feels like my entire vulva is disappearing; advice? Help?

Posted , 11 users are following.

naocat
naocat

Hello! First time poster, but I've been browsing on here since my diagnosis a few months ago. For years I was having constant vulvar pain, and attributing it to UTIs. Finally went in to see a gynaecologist, after my mother developed vulvar cancer. Gyno diagnosed me with LS and gave me clobetasol to use three times a week for the rest of my life. I'm only 27, so this was all a bit of a shock to me.

Anyway, the pain has all but gone, although it's still sometimes painful having sex. I feel like I have my life back, finally, and it's so good to feel normal again. But looking at my vulva every other day in the mirror to apply the clob, I notice it seems to be changing pretty drastically.

I've never really had labia minora, as far as I know. Maybe they absorbed when I was very young -- there's a faint scar from where they should be. But my outer lips were always pretty thick. Now they've shrunk to almost nothing, and my clitoris is completely fused over. I can still orgasm and have sex, and the clitoris thing almost doesn't faze me because it was super sensitive to begin with so now it has a nice cozy layer of protection and I still have plenty of sensation. But it's weird and scary looking at my vulva and seeing it get smaller and smaller. If this is the state of things now, I wonder how it will look in another 10 years? 20? Will the vaginal opening eventually close over?

Anyway, I'm just wondering if anyone out there has some tips or strategies on how to deal with this stuff. Any regimes that work well for you? Physical therapy? Any similar stories to share? It really helps hearing from others in the same boat; it's such an uncommon disease and relatively mysterious and I sometimes just feel really alone with it.

Thanks for listening!

0 likes, 7 replies

7 Replies

  • j02359
    j02359 naocat

    Posted

    Hi there, I've had similar loss of 'architecture' as they call it!  The regular use of clob should stop it getting any worse - plus vaginal dilators are a good idea, just to keep everything open and stretched.  When I first noticed I was so shocked and upset but it then becomes your new normal.  I think it was happening over years - and no boyfriend ever noticed btw - but I wasn't brought up to be vulva aware, so I think I was quite ignorant about my own body then.  This website and all the lovely supportive people on it continue to teach me a lot!  You are not alone but - like all of us here - you have a condition which no one really every talks about.  Take good care of yourself.  Best wishes. 

  • sarb73328
    sarb73328 naocat

    Posted

    Hi Naocat, poor you, I trust you are moisturizing like crazy as well as using steroid? LS can go into remission too, so as you are young I would imagine that could happen if you keep up with the steroid. I also experienced unfusing a little with steroid, which I didn't think could happen. So there is some hope that you will not get progressively worse. Hope that helps a little.

    So many of us have not been vulva aware as j02359 says and no women (that I know anyway) discuss this part of their bodies, so this is a hidden condition! Thank goodness for the connections and help on here.

  • Nancy_K_B
    Nancy_K_B naocat

    Posted

    HI naocat,

    Happy Monday after Easter. Sorry we've all been so busy with Holiday. I feel for you; I'm 72 now and haven't had quite the scenario you are dealing with, BUT I was able to get my LS pain down to almost zero by reading up on all the other women here who've tried and found success with various nutritional things like Vitamin D, MSM and other such. Please do read back on all the nutrition and maintenance suggestions here. and HAVE HOPE! This autoimmune thing IS solvable. 

  • Blueplum
    Blueplum naocat

    Posted

    Hi nacot. Just read your post, I’m experiencing the same issue. Can’t help but think that maybe the clob cream is making the colour changes of the vular and shrinking the labia minora as it’s a very strong steriod cream.  My labia has become very thin and shrink in size. Mostly fused together not a pretty site to look at! I know the clob helps with white patches. How are things with you ? Have the symptoms improved ? 
  • monique93969
    monique93969 naocat

    Posted

    Hi Im going to be 27 on the 29th of this month, within the last year my vulva has shrunk to half the original size it was and my right labia is so small im just waiting for it to dissapear anyday now!! Im completely horrified , it hurts to have sex and i cry almost everytime. Im actually losing sensation in the clitoris i can hardly orgasm and my skin is turning white  along the edges and the labia majora are wrinkly and flat. Ive been to all kinds of doctors and they all told me yeast infection!!!!! I hope im not making you feel worse but i thought i was the only one dealing with this so early I wont let my boyfriend look up close down there now he thinks I have an STD and im trying to hide it!!!! I need advice somebody please help me too!!
    • Nancy_K_B
      Nancy_K_B monique93969

      Posted

      Monique you dearheart I'm so sorry for your emotional pain as much as the LS.  perhaps spirit is telling you something? you might want to assess your relationship with your boyfriend, is he marriage material? do you want the depth of relationship that can weather this situation? He deserves to know the truth so that his on feelings aren't hurt or think you are lying. Trust him dearheart.  I think he would be mortified if he knew that you are crying from pain... let him decide if he wants to  participate in your remission/recovery from this autoimmune issue (that comes out of nowhere really).  

      If you two live together ask him if he'd like to learn to eat more healthily together - even take a cooking class together. smiles - it would be FUN!  My daughter who is now 33 and her husband same age have cooking parties at their house and of course games night too, grin.   you HAVE GONE SUGAR Free, right? .. and have you read enough here yet to know that you must be taking Vitamin D3, magnesium, zinc, Vitamin C, these will clear up the open sores. you;l be taking some of them for the rest of your life. That's okay and good. hugs toyou, Monique it will get better ... OH and take vitamin B complesx to help with the anxiety etc...  

  • katie83450
    katie83450 naocat

    Posted

    Hi,

    im totally new to this group and could really do with some guidance and support.

    Two years ago i was having pain down below and splitting very easily! I got referred to a gynacologist who said it looked like LS! Explained everything and gave me Eumovate to use twice a day for a couple of weeks! I went back for a follow up a month later and she said it seemed better so to just keep the cream for when i have a flare up!

    I had no itching or pain really after so i only used it every now and then but the last couple of days i have noticed im red and sore down there so went to my gp who is a skin specialist and she said she isnt happy with how it looks so referred me to a dermatologist but have to wait 4 weeks! im freaking out now!!!!! It looks like my labia minora is disappearing and my gp said she wants to get something done before it goes completley and in around 20 years i go back to her with my clitorus completely covered over!

    How long should i keep using the cream for?? Ive luckily still been able to have sex ok and i dont want to lose that! i want to try and save my area!! I am only 29!

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