Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[CoastalChaos]

Hi everyone, new poster here. I was wondering if anyone else is dealing with labial fusion along with LS and has any tips or meds to recommend?

I'm two weeks out from my third operation to reopen my labia, & I'm currently checking it twice daily in the mirror to stop it from sticking back together - which is making me very sore. I saw the Gyn yesterday who said hopefully it will eventually stop trying to stick and I'll be able to drop down to checking it once a week or so, but reading between the lines she really wasn't sure & I'm just very fed up of it taking up some much time and mental energy.

For the fusion I've been prescribed Estradiol cream 3x weekly and advised to use vaseline in between, as well as using dilators. I'm on an HRT patch for other meno symptoms as well as Dermovate for the LS, which thankfully is not too bad at the minute.

Needless to say my sex life is non-existent.

Anyone else out there dealing with this?

[Jules]

I had some fusion of the inner labia on one side. Ive never been diagnosed with LS and never seen a consultant.  My GP offered no treatment,  led me to believe it was just aging. I didn't know it was a deteriorating condition.  But very worried and after reading experiences on here asked for some ovestin and began using it every night. I was already using vagifem so increased that. I'm currently using some ovestin in the morning too as I had a flare up. I'm going to try to cut it down. 3 x weekly doesn't sound very much for such a problem but maybe I'm overusing it

[CoastalChaos]

Hi Jules.

I've just been reading the VA thread and it sounds like my gyn is very conservative with her prescription and that more than 3x a week is now seen as OK. I think she does more work with pregnancy than meno. I also read that sometimes fusion is due to VA, not LS, although I was itchy enough that I'm fairly certain LS is an issue for me, though VA is in the mix too for sure. 

In my case the fusion happened really quickly, for the first time it was during lock-down and I closed up enough that I couldn't get even a vagifem applicator in. It also started pinching my urethra so I had to bear down to pee, so the GP was concerned about UTIs. The Gyn didn't say, but I got the impression that I was at the more extreme end of the scale, so hopefully yours doesn't deteriorate.

[Jules]

It does sound extreme. It must be stressful. I hope you get some comfort soon and can get on with life.  I don't think GPs know enough about this condition which is concerning in itself because they are the first port of call.

[Jules]

Are you in the States?

[CoastalChaos]

No, in the UK.

[Jules]

I do feel for you. It's a horrible condition.  I bet there's loads of older women who didn't get any treatment

[Suziemc]

Hi

Fellow LS sufferer here but, thankfully, mild symptoms. I use betnovate weekly and Dermol emollient to wash with, during washing I try to massage my labia to stop fusing.

If you're not already a member, there is a great LS support group on FB - Lichen Sclerosis UK Support Group (or v similar) which is full of great information, support and advice.

Suzie

[CoastalChaos]

Thanks Suzie, I'll take a look.