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[Ruby2]

Hi ladies
I was diagnosed with VA about 8 years ago and also tested for LS which was negative at the time. Having been reasonably ok using ovestin for a few years the symptoms seem to have gotten worse over the last couple of years and some more fusing and shrinkage has also occurred . The gynae was great and suggested I had another biopsy for LS which im currently waiting for. The problem is the idea of having LS and everything associated with it makes me very very anxious and distressed as it’s such a personal and private area. I feel alone with this as no one else I know suffers with it or understands how I feel, so I have to hide my feelings and there at days when I find it very hard. I have a busy work life and home life and am struggling to deal with the psychological impact it’s having on me. Feeling alone. 

[sheila99]

How often do you use ovestin? Perhaps it's time to use it more often, some people need it every day.

[Minusminnie]

Can you find time to go to a menopause group if you have one locally or can find one on enquiry/ search.

I went along to a group that started up local to me a while ago and took some information on VA. The conversation was around other symptoms until I brought it up but the lady running the group completely understood and let the conversation roll.

You will get support on this forum too.

[Ana21]

Hi Ruby2

There is a private facebook group that may help you to feel less alone and provide other resources.

https://www.facebook.com/groups/221930761513570/

"Lichen Sclerosus UK support group was set up to help and support patients in the UK and enable them to share treatments, procedures and doctors as names and terminology differ worldwide.

This is NOT a UK exclusive group, we have overseas members also as some people find their treatments are more similar to those in the UK."


I don't have LS and have no personal experience with the group, but it's always nice to have a place where you can express your anxieties, knowing you'll be heard and understood.

[Suziemc]

There is a private facebook group that may help you to feel less alone and provide other resources.

https://www.facebook.com/groups/221930761513570/

Hi Ruby2

I have VA and LS - welcome to the club    The FB group that Ana21 posted about is fab, it's well moderated so it's a safe place. Definitely worth you joining so that you know you're not alone and to get any support you need, whether that's just by reading other people's experience or by asking questions.  The only thing I'd say is that, like any group (including this forum) people often only ask questions and share experiences when they are struggling. Don't be scared by some people's stories, lots of us have mild LS which is relatively easy to control.

You are definitely not alone, once you start reading/joining groups/talking you'll realise it's not as rare a condition as you first think.

Suzie

[Ruby2]

Hi thanks for the reassurance. How do you manage the burning? When it flares up it is really sore for days and no amount of cream eases it. Only eases off when I lay down or take painkillers.

Hi Ruby2

I have VA and LS - welcome to the club    The FB group that Ana21 posted about is fab, it's well moderated so it's a safe place. Definitely worth you joining so that you know you're not alone and to get any support you need, whether that's just by reading other people's experience or by asking questions.  The only thing I'd say is that, like any group (including this forum) people often only ask questions and share experiences when they are struggling. Don't be scared by some people's stories, lots of us have mild LS which is relatively easy to control.

You are definitely not alone, once you start reading/joining groups/talking you'll realise it's not as rare a condition as you first think.

Suzie
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[Ruby2]

Thankyou for your reassuring words. The burning is what gets me down the most. How do you deal with that? It only eases off when I’m lying down.

[CLKD]

R U using appropriate treatment for vaginal atrophy daily?

[Ruby2]

Hi CLKD
Yes I have been applying ovestin every day for the last 10 days as well as twice a week Dermovate. It comes and goes but the flare ups last a couple of weeks and are so uncomfortable.

[CLKD]

U can use it internally and externally, when my symptoms rumble on I pop an extra dose internally mid-morning as well as swallowing 2 Nurofen 3 times a day.

[Ruby2]

Thanks. I will try all of that. It really gets me down some days.

[CLKD]

Yep, it can be all encompassing.  When my symptoms niggle it's below my belly button  with a feeling of fullness.