LS under control after months! :)

The shrinking has stopped. Because my skin is getting healthier (colour and texture is not so shiny tight looking) i can actually see more of a line between the inner and outer labia. 

Hi Tracey, I’m having exactly the same issues. Labia minora is vanishing too. LS is completely under control - my Grno appoint is a while away also vulvar appoint. Can I ask about the eleuphrat cream was this  prescribed for the labia minora shrinking? I do try to stretch what’s left but it’s heard to grab it. And it’s making me feel really down and upset. Feels like I’ve lost a limp or some thing. 

Hi Blueplum, I’m totally with you, it’s so upsetting.  No the ointment I’m using is not to specifically stop the shrinking, though I’m hoping it does! It’s basically another steroid to get the inflammation, itching and lesions under control.  I’m not sure if it’s the same as clob... I think it might be slightly milder, though I still need to read up a bit more to understand it all. 

From what I’ve read on the forums though, it sounds like for some women the shrinking stops, and for others it continues, regardless if other symptoms are under control. It really does seem like LS affects everyone slightly differently... which is hard because it’s difficult to know what to expect.

Hya Tracey, I’ve read on another website to stretch the labia minora. I personally wouldn’t recommend this. I tried yesterday & am in agony. Defferently not ideal, I just hope someone finds a solution very soon. X 

Hi , mine seem to be shrinking every time I look , my clitoris looks like a child’s  and I’m 57 , I know things do shrink with the menopause but mine have dramatically shrank since my diagnosis 12 months ago . No one seems to mention the clitoris , just the vulva , which has also shrunk , it just feels odd when I walk  . Not sure what to put on it , just ordered emu oil from eBay  but thinking when will the shrinking end 🤔🙁

Oh dawn, I feel just the same, Im so so worried it’s freaking me out. Ive just turned 38 and was only just diagnosed few months ago. Yeah your right no one gives advice or any basic info of the citrous and labia minora vanishing it’s surprising. Wish there was a treatment/cream to apply I’ve got an appoint with gyno emergency will speak to her Monday and see what she advices.

Just wish we can do some thing, I’ve tried stretching have been in serious pain from this and that’s just not a option again. Good luck hun, I’m

Hoping and praying sum one finds a solution before it completely vanishes. Do you use Borax? Has that helped in anyway ? 

Just wish there was something to use to freeze it in place. Sending love x 

Hi , no not used borax , I have got some but haven’t tried it as yet . I just have Betnovate and I wash in e45 emollient wash and Hydromol as moisturiser  and barrier and just water after peeing , I have ordered some emu oil from eBay. Let me know if they suggest anything for the shrinking . Good luck x

Blueplum and Dawn - I found betnovate helped to halt the progress of shrinkage of labia and clitoris and even unfused me in places, I think i was lucky that I 'caught' it quickly. I also believe borax helps slow up LS and some have found it unfuses too.

It is so alarming when your body is working against itself in this way and so fast and no doctor seems to acknowledge how upsetting it is, after all it is your natural architecture becoming deformed and that is awful.

Another thing I read which I pin hope on, is that the structure is all still there when it fuses, so there is hope it could 're-appear' with steroid use.

Blueplum, I would be interested to hear what your gynae advises, please let us know.

Hya hun, I’ve seen the gyo a few days ago. Surprising she said no cure for labia minora some people don’t have any count your self lucky you have small amount!!!! Like that’s going to give me any confidence. She said everyone’s body is different & shrinkage is part of the condition you can’t halt it. She adviced against the borax as she said you will make the skin there more sensitive and prone to soreness and infection. She did advice me not to use clob any more as the white patches have disappeared and said you look much better then last time. 

Still doesn’t explain or help with the strinkage of the labia minora does it ? What a stressful time. 

Oh dear ,I  just don’t think anyone knows much about this  disease , I get  the feeling as well that if this was making a mans dick shrink and disappear something would get done quick smart . Baught emu oil from eBay last week , used for a few days  now , no reaction , feels lovely as can’t use coconut oil , still using hydromol for a work  day as it is thicker and seems to last longer  . Hope you get into a routine that suits you Hun xx

Thanks for this update, Blueplum. Interesting what she says about Borax when my experience is that is soothing. I guess from what she says, we all have to ready ourselves for losing our labia minora?! My GP's comment when I said 'I imagine this just gradually worsens" was "maybe not". Does anyone have any experience of a 'halting' of the condition and if so for how long? 

I was told by a specialist gynaecologist in avulvar health clinic that clobetasol is needed, no other steroids are strong enough. I used it every day for three months so I am not sure how a lower potency would work unfortunately. My labia was shrinking at an alarming rate but the clob and emu oil/coconut oil seem to have stopped the shrinking and it almost looks as it is reversing a bit, or plumping up. More of a line between lower part of  inner and outer labia.