Hello
I went for my 3 month follow up gynocology appointment, after 1month of Dermovate cream everyday, 1month every other day and the final month of twice weekly. I have followed DR Goldstiens application advice throughout this time.
I am still incredibly itchy. My gynocologist was surprised that I was still itchy after the treatment cream and spoke vaguely that 'one day I should be able to do without the cream but if you are still itchy, use it as you need'. My understanding is that I should never fully stop using the cream.
This was how it was left due to my appointment taking another twist which I shall post in a different discussion.
So, what do I do in regards to the cream. Shall I use it daily again to blast the itch and hopefully stop it? It's awful.
Please give me some suggestions
A123
I'm in the same boat as you...im still sore in certain areas 4 months later. I do have days when things are quiet and then a flare up..
I have an appointment with my dr on monday.
The steroid has not stopped the progression that I am experiencing either. I've used it for four or five months (pretty much daily) and I still have some white patches and fusing that it occurring. Disappointing and scary. Have also been on a strict autoimmune paleo diet (with some excesses of watermelon and some potatoes along the way), and still it marches on relentlessly. Really wish we could find the key to stopping this disorder! Also wish that I could be more encouraging. Anyone with successes want to speak to what has been central to their recovery, or to why others may not be getting those results? I'm aware that everyone is different and that there may be several varieties of LS, but any other thoughts??? --Suzanne
After 3 or 4 months of pain itch and fissures around the anus and front while using creams and ointments as recommended and not getting better i started using bicarb-soda washes and mine is completely gone.
It's cheap household ingredient and wont do any harm but may well give you a big surprise like it did for me.
I could not be happier with the results.
Good luck
Wilma.
I'm glad to hear that, Wilma. I did see that some people were trying baking soda. Your encouragement is just the reminder and boost I need. I'll report back. Thanks for the nudge. --Suzanne
Hi A1,
I was disappointed in Dermovate's results after five or six months. Now that it's been well over a year, I'm realizing how gradually it works. I've been down to twice a week for almost a year. Once in awhile when I've had an emotional upset or eaten a bunch of sweets I flare up and that day I use the ointment even if it's not Monday or Thursday. I'm finding the flares are not very bad and the very rare times I get a white area on my perineum and a tear, it's a very shallow tear that heals up after the extra clob application.
Unfortunately this doesn't constitute a promise that you'll have the same experience. There is such a wide range of how slow or aggressive LS can be in different people. Mine has been with me for forty years and I'm not too bad, so I guess I have a slow case. Most of the atrophy and fusing happened before I was diagnosed at age 62, so I'm just treating it for 1. comfort, 2. hoping to have a plenty wide opening to pee through when I'm 80, and 3. avoiding chronic open lesions in expectation that I won't be a vulvar squamous cell cancer statistic.
And at the risk of sounding like a broken record/wet blanket, if you grin & bear it through penetrative intercourse when you're flared, it will make it worse and ultimately cause more fusing and atrophy.
Now that my vulva is very calm, I can safely practice dilation – gentle stretching – of my introitus while I soak before applying clob. It's so good for our mental health to feel there are supplementary things we can do on top of using the meds.
I'm happy with the baking soda in my soak baths, too.
Start to sound like I'm repeating myself, but am so enthoused: I have started to use baking soda (not baking powder) in my warm water spray bottle (three to four pinches) and use it after every bathroom visit. LS first stopt and then retreated as fusing somehow seemed to 'melt' bit by bit. I also use one third of a cup in my every other day bath and has helped with other spots on the body, plus has helped with skin disease on my hands and feet. I hope this keeps going the way it does, as it gives me much hope that the LS will become manageable after all.
Hello! I am from Canada and new to this forum (I chose this one because there doesn't seem to be any support groups that I have found for Canada, so I hope you don't mind me joining in).
I see a few mentions of the steroid treatment called Dermovate. The cream I was prescribed is called Taro-Clobetasol at 0.05% which is a topical corticosteroid. Is that the same thing? If not them perhaps asking your doctor for it . Before I was prescribed it I too was itchy all the time. Soaking in a hot bath was the only thing that would help and it would only help temporarily. Then I started using Taro-Clobetasol and within mere minutes I finally had some lasting relief. Not to get too overly personal on a first post but oddly enough though, I have hardly ever had any more itching ever since my clitoral hood fused closed. I think that may have been the major cause of my itching. Now I only use the cream when I have flare up of tearing skin or large grey patches returning. I have been dealing with this for about 4 or 5 years now and I am the only person I know who has this. I had no idea that fusion could even occur until it happened. The first time I have been sexually active in over 3 years was not too long ago and boy did it hurt like crazy. So thanks Morell1951 on your advice on intercourse.... you may worry about being a broken record but if you hadn't have said it, I never would have known. So repeating yourself was much appreciated.
Welcome Pixel_Pixie--Thanks for your input! I was curious if your fusing happened BEFORE the Clobetasol? Yes, that's the steroid that most of us seem to be using. Also wondered if you thought that the pain that you experienced with sexual activity is due to the fusing or to the skin quality and lack of stretching with LS. I'm getting some clitoral fusing and also now have pain with intercourse, so wondered about your experience with this, too. As Morrell advises, that may be our body's message not to proceed with penetrative sex (which may not be popular with our partners). Thanks for your thoughts. --Suzanne
Thanks again for the baking soda reminder, Hanny. Sometimes I have to hear things a few times before I break down and change my routines. I shall try it!!! I hope that you are feeling better each day. --Suzanne
Thanks for your advice, Morrell--I'm wondering how do we know when we are flared? I think that I've been in a constant flare these past few months. I don't know what normal is anymore, I guess. Will those tissues ever lose the whiteness? Do they become stretchy again? I know that the archectural changes stay, and some loss of coloring stays, but does the tissue become normally stretchy again? How much remaining whiteness is normal for LS? Do most people give up on sex? Does it ever feel normal again if there isn't too much fusing? I'm a hot mess of questions, aren't I? --Suzanne
I believe that Derm and Clob are the same. I'm from Canada too Pixie. Also because of lack of anything in Canada have I joined this forum. Good people here.
Thank you for your input. So... Shall I keep using the clob say every other day in the hopes that eventually it gives me some relief?
Interesting about the baking soda...when you say a spray bottle, do you suggest spraying this on everyday? At what times? Normal baking soda from the supermarket yes?
A123
Some make up a spay but i wash with it after every single trip to toilet. Apparently urine is thought to be a contributor to LS so i have rigged up a bidet in my bathroom and use about a heaped teaspoon to 2 litres warm water and thoroughly wash and dry with this. Its so calming and soothing on the skin. Then i use the ountment about 2 to three times a week if that.
Wilma.
Oh yes baking soda from super market. Bicarbonated soda.
I'm in Canada, too, Pixie. My gynae prescribed Tar-clobetasol cream, but after watching Dr. Goldstein's presentation (there's a link in the pinned start-up topic of this forum) I asked the pharmacist to give me Dermovate brand (Taro is generic) ointment (instead of cream).
You're a hot mess of questions. 
I'm not flared when I'm not feeling irritated around my anus, squirming in my seat. When I use the old shaving mirror every night my perineum isn't torn and although it's almost always very pale in a tiny area, it's not cigarette paper-white in two square inches like it used to be. I don't have red, itchy, bumpy skin in the front (mons) area where the hair is most dense.
I do, however, always have a tight bridge across both ends of my introitus, which will only take three fingers with some effort after five minutes soaking an a pretty hot bath. That's the irreversible part. Maybe you'll have some success with the estrogen cream, but Dee on the 'Living with LS' blog says it took three years for that to take effect.
I think I've also heard this enough times that it's time for me to set up a spray bottle in the bathroom. I'm very happy with the soda baths.
Ordinary baking soda. Every time after a bathroom visit.