My physician suggested I use the Clobetasol every other night and I asked for how long and he replied forever.
Question - if I don't have itching, pain or irritation does anyone think it is okay to not use the Clobetasol until such time that I have the reoccurrence?
I don't want the anatomy to ho thru anymore changes. Does the Clobetasol stop the changes?
Tricky one this, as I've been using clobetasol for several years now. I was advised to use it until the white patches go and the skin gets pink again. But often I wouldn't know if I had white patches as I don't always get irritation. Changes go on without you knowing fusing of my clitoris being one and I only realised what had happened when I looked in a mirror .... That was a shock! I use it when I feel any rough patches or suffer from itching although clobetasol makes me irritated when I apply it too. I don't think you can stop the inevitable changes so just use common sense and if you need to use it but give yourself days off if possible. I use coconut oil a lot as it keeps everything down there lubricated and it's harmless.
Hi Mary, the clob is used as maintainable to stop any reoccurrence. If you wait for a flare up it may not settle down straight away, it is often weeks with me and you will end up using more steroid more frequently to correct it.. if u are concerned why not ask your Dr for a milder steroid than clob.. I use mine about 3 times a week for maintainable and this works well for me.. hope this helps - jo x
Sorry meant to say maintainance ( predictive text) x
Hello Mary, I have just been prescribed Clobetasol by my GP. I was advised to use it once a day for two weeks and then once every other day for a further two weeks. Then once every three days and up it again if required.
I have noticed from reading discussions on this site that advice seems to vary with some using a more mild steroid cream option when their are fewer flare ups. Others seem to prefer alternative therapies like Emu and Coconut Oil.
I feel it's probably working out what is right for you as well as looking out for any possible negative side affects.
That's what I am going to do.....good luck!
Hi Joanne,
Can you please share what type of steroid you are using for maintenance ?
And how long have it been working on you (to keep the LS in remission)?
Thank you a lot,
Phong
I still have a question of whether we should use steroid for maintenance (1-2 times/week) forever OR we should use only as needed - when it come back ?
Anyone have any idea on this ? Any input is very grateful to me.
Thank you all,
Phong
Mary,
My Dr. told me to drop back to once a day for a week once symptoms are under control, and after that week, just use it every other week to attempt it from flaring up again. Because LS can have such significant consequences, I was told that I should see a gyn or a dermotologist on a regular basis.
I haven't used steroid since February and am pretty stable now. I've just had a specialist appointment and he agreed that I should only use it if things go backwards. To give context I was diagnosed about 6 years ago, in my late 40s, just after going through menopause. Probably had it a lot longer, like many on this site. I was in quite a bad state at the time, all white, some fusing, terrible itch. I used Clob twice a day for three weeks, once a day for three weeks, then two or three times a week for maintenance, with back to once a day if I had a flare. All fine as long as I wasn't stressed. I had a couple of major stress events and things deteriorated, then stabilised each time, but always at the new (worse) state. It never went backwards.
Last year, following a discussion on here I started using bicarbonate of soda rinses and baths, things felt better at once, but the bicarb irritated my uretha. Then I tried cider vineagar which instantly made the skin more comfortable and stopped the itch in its tracks. I kept using it but things stayed stable. I was still using clob twice a week.
Then I finally gathered my courage to try the Borax that people were talking about. You can find the discussion on this site titled 'an experiment with borax'. https://patient.info/forums/discuss/an-experiment-with-borax-5020 The good results were really quick and I am even unfusing. It's very gradual, but there were bits I didn't even realise were fused until they suddenly came loose. It's taken months, but it's happening. I was worried that it might all look better and bubble away underneath, but as I said above I've just had a vulval-derm appointment (I didn't tell him) and he said that he'd be happy to discharge me, it was all looking so good. I said no, (I want to stay in the loop, especially if I'm going 'off piste' with treatment.) I'm in the UK
Really important to read the discussion properly, make sure it's the right sort of Borax, there are other types which could be nasty, the right strength and that you don't overdo it. I still have my clob, and am ready to apply it if necessary. This isn't a rejection of conventional medicine, just an attempt to enhance the treatment options available. There's often gems of truth in old wives tales.
I can't stress enough that when you've read these forums for a while, it becomes obvious that everyone is different and responds to different things. We are all happy to offer advice from our own experience, but at the end of the day each of us has to work out what works for them through trial and error. So I'm offereing my tuppence worth.
Good luck. (that was a longer answer than I meant to write. Oops)
Good answer though very informative, might try the borax road as am worried about the fusing as I like you possibly don't realise it's happening. I'm a bit cynical about anything being to infuse but anything worth a try I suppose (can't do any harm). Going to see a gynae chap today, but don't hold out much hope that he's going to have any answers to stop thing closing up for good. I'm also booked in for a rigid cystoscopy to stretch my uretha as have off and on discomfort there too which started in April. I think you're right stress makes things flare up didn't think it could but my dog has had a tumour removed and I've just got a flare up of sorts although have also changed my washing powder and think this may have set me off too. Will read borax article and decide thanks again.
Hi Phong
I use Audavate RD 0.025 w/w cream also known as Bethamethasone Valerate. I have been using it for about a year and have had only one flare up.. During that time I used clob for a week or so twice a day until it felt settled enough to go back to the lesser one. Also I felt that the flare up was caused from a sugar overload so I try to be more careful with my diet
Jo
Hi Joanne
Thank you very much for your reply.
I still have some questions..
Did your doctor tell you to use Clob when you have a flare and then back to maintenance or we just do it ourselves?
In addition, do you intend to continue maintenance forever or stop using steroid when everything is ok and use Clob when symptoms back?
Thank you so much Joanne. Best wishes to you..
Phong
Hi Phong, yes my consultant prescribed both for me and advised me to swap between. I will use the lesser one for maintainance always not just the clob for flare ups as if it starts to flare it could be weeks b4 it is under control again.
Also I need to stress that good eating is also the key to good maintenance. I don't cut anything out but have in moderation
Hope this helps
Jo
It helps me a lot!
Thank you Jo.
Please keep in touch!
Best wishes to you
Phong
Hi there I've ordered some Borax and confident it is the correct one. Could you advise me on how to dilute, how to apply and do you apply only to fused areas?? I have just had two biopsies as I saw a new dr who didn't know my history so she wanted to be safe which is fine, so won't be applying until healed. It really does amaze me how complicated this condition is and how even the medical profession don't seem as clued up as they should be.
Hi Joyce
Ok I've had a reality check today, I'm maybe not unfusing as much as I thought. I last dilated in february. Today I got up the courage to dilate again as I'd been concentrating so much on the upper bits I hadn't noticed my vag sticking together at the back. I'm about the same as I was then, a bit of a squeeze but still on the same size dilator, and not too uncomfortable. My labia have seams in them where before there was only smooth skin though, so overall good rather than bad, but not a miracle cure.
Anyway; here's what I do. I put tap water in a small bottle, then add the borax a tiny bit at a time and shake the bottle. I stop when no more disolves. A sturated solution. The once a day I use a cotton bud and work it over any white areas and seams. I started off quite gently, now I'm a bit rougher. I did a bit too much one time and got a bit sore. You'll have to try what works for you. Someone on the thread soaks a facecloth and leaves it on for half an hour. It's trial and error. If it doesn't work for you STOP. It's quite strong stuff. My homeopath says it's very common for skin things to do miracles when you first start them, then stop working. I'm planning a break for a few weeks for that reason, then I'll see how it goes.
I'm about to go on holiday with no internet, so won't be able to answer any questions, but if you go to the main thread I put in above, all the lovely people on it will be able to answer anything I'm sure. Also it's useful to know how many people are trying it, and if it's working, because then we can offer advice to others too.
Oh and take photos. Changes tend to be small, and when you're looking every day, it's easy to miss them, or think they're there when they aren't. Also if it does work for you you'll need to have something to prove it to your doctor (if you want to tell them. Mine is very closed to alternatives, so i keep quiet).
Good luck, let me know how you get on.
Thanks for info, I'm a bit nervous about trying anything as my dermatologist is against anything except clob and washes I.e dermal 200. I do tend to ignore mine a bit and rarely look as its not pretty. So I want aware of clitoral fusing until too late. I believe surgery is an option but am sure it will just fuse again. Have a great holiday.
I have been dealing with this for around 8 years now and have found consistently that when I'm not having a flare-up and I stop using the Clobetasol, my LS symtoms always come back with a vengeance. So for me, I've decided it's really not worth straying from my maintenance regimen even when I'm not having problems. I use it 3 days a week currently, and use emu oil regularly as well.
I had actually lost my labia minora to LS, but with the clob ointment they have been restored. So not only does it stop the changes, it can restore your anatomy to its natural condition over time. I highly recommend keeping up with it.
As far as I know - the clob stops LS, but does not change back the anatomy. My experience is that baking soda baths and rinses, with baking soda after each bathroom visit and then applying coconut oil, take care of the letting go of the fusing. I also think that my strict diet - mainly no sugar, alcohol and gluten, has a lot to do with my improvements.