Fentons

Hi hanny, How often do you do the borax bath? Thanks! Glad you have LS under control.

I was just diagnosed with LS in Oct. of this year and have been having a really hard time getting it under control . I just discovered site this week . Its helped to hear that people are able to find ways to manage their symptoms. PLEASE tell me about the borax baths and what kind of rinses you use. I'm struggling here and can use ANY advice . Doctors have been unclear and not as helpful as I hoped.

Bath's every other day. Rinses after most bathroom visits.

I'm curious what this is as well... I also live in the US.

I wonder if it is available here? I'm definitely not ready for that, but in the event I could no longer urinate I would consider it.

I know - I'm finding that most of the info and research/studies, etc... I'm finding on LS is from the UK.

Have you asked whoever is treating you? I didn' t think to ask my gyn but now that things are magically disappearing I'd like to know. She has left the medical group and is supposed to open her own practice at the end of the summer. Seems a long wait.

I'm going to ask my gyno when I see her in a few months at my follow-up appt about surgery to "unfuse" my hood from my clitoris. She said the clob would "unfuse", but I have a feeling it wont.... 😕

Debbz - please let us know if you do have any unfusing with the clob. My hood is fusing and i am using betnovate in the hope of stopping it or at least slowing it. I have a derm appt in July and will ask for clob as i know betnovate is weak. If its any encouragement tho i experienced some unfusing of labia when i first started using steroid - so there might be some hope if you have caught it quickly. I am pesimisticly guessing that i will lose my clitoris eventually though judging by what is reported on this forum.

Sarb - I will for sure keep all posted if mine unfuses with the clob. I've been using it now for almost 3 weeks... no change in the fused area, but I feel like my itching has subsided a lot. So we'll see how things go over the next few months. (Fingers crossed!)

For what it's worth, I just read in the V Book "for vulval eczema" it is best to soak for 10 minutes in warm water (NOT as hot as you can stand it which others on this forum have recommended) before applying steroids.

Soaks in warm water restore a better environment to nerve endings, lessens itching, hydrates the skin and allows better absorption.

The author (Dr. Eliz. Stewart) does not repeat this advice for LS, but they are in the same chapter. I imagine to repeat it each time re steroid application would have been repetitive.

I have tried using a warm compress first. It also soothes and probably achieves the same end.

Debbz - at least there are some improvements already. Fingers crossed for unfusing.

Beverly, that makes sense and I know soaking in borax solution certainly soothes and softens the area.

sarb, what exactly do you mean be unfusing of the labia? Was it gone then reappeared? Mine is simply gone. And what's happening re my clitoral hood leads me to believe the same will happen to it. Maybe I'm being overly dramatic, but I'm using the clob a lot and it doesn't seem to change much of anything.

When I was upped to clob at the end of April the original directions were use twice a day for a week, then once a day, but it failed to say for how long. I find I can't really skip a day. My gyn has left the group and there are no other skin specialists there. I feel as though I've been left in limbo.

Is anyone using it everyday with no end in sight?

We all have to remind ourselves there are over 100 AI diseases. To my knowledge none of them are curable, only manageable & some less than others. I had a GP with scleroderma which has got to be far worse than LS. When I first met him I thought he had been badly burned. So we do need to keep that in perspective and do the best we can. Those of us who have gotten this as older women are at least fortunate in that regard.

Beverly - my doctor has me using clobetasol every night before bed for the next 6 months until I see her again. I've read that some people use it a few times a week... some use it every day... some use it only when they have a flare up.... so it seems to be different for everyone.

Thanks Debbz. I'll go with that as meaning there's at least one dr that thinks it's fine. I actually don't think I have the option to stop!

Beverly - my labia was not completely gone but fused towards the vagina some of which unfused a little when i started steroid. I still have both labia minora but they have shrunk condiderably and so has my clitoris and the hood is fusing one side. I have gone back to using steroid nightly but don't hold out a lot of hope for any unfusing now. I believe oestrogen cream has helped to 'keep' my labia.

I dont appear to be getting email alerts to any of the diacussions i am on. Does anyone know why or how to remedy it?