I read about it on the internet (of course!) and the women commenting on it swear by it. I've been using Clobetasol 0.05% prescribed by my gynecologist for two weeks and I've seen no improvement at all. Am I being impatient or should I have had some relief yet from the Clobetasol.
I'm feeling quite desperate and LS is starting to invade my thoughts all day, ever day. I'd just like to sit comfortably. I have LS vulvar and all the way up the backside too😔
Thanks for any suggestions
It seems a lot of people try or are directed to quite a few treatments, some of which woprk but also tend to thin the skin, making it more liable to injury.
There are times when adjunct treatment can help, say, when you are instructed to use a high strength cortico-steriod twice a week; in that circumstance, something that would soothe and help pacify the inflamation could be applied on the days the c-s is not applied.
One such treatment is a mix of two parts castor oil and one part coconut oil, both of these oils have very helpful properties on the skin, especially in the genital regoin as bot are anti-fungal and anti-bactrerial as well as being very emolient. This mix can be applied as often as needed, and as liberally as you wish; apart from the tackiness due to the castor oil, it is very clean and soothing. Both these oils are used in cosmetics ar moisturisers, so they have a history of trouble-free use.
Not expensive, and very easy to use. You can only find out if it helps you by trying it.
My doctor has me on Clobetasol three days a week, twice a day and every day Estrace, twice a day. I have
used the coconut oil before I knew what I had and it seemed to help ease the pain. I will try the caster oil
and coconut mixer. I have used the coconut oil on my skin else where like the face and hands and it makes those areas soft. Thanks for the information.
Hi Kiki,
I know what you mean about LS invading our thoughts. The Clobetasol will take time and we won't be finished with it ever.
My feeling about creams and ointments is that oily is good and use them liberally, even on top of the clobetasol. I opted out of the Premarin cream because it made me depressed. It was supposed to counteract the thinning and make the flesh more supple. I have two local women who make herbal creams and salves, so I use the light (grapeseed oil, beeswax, and vitamin E) one that absorbs well first, then the really oily ointment (vegetable oils infused with plantain weed) on top of that. I've been using clobetasol for six months and things improved gradually, but they're a LOT better since I added the creams. I'm not getting the big fissure across my perineum and I'm not squirming on the couch with the angry red ring around my anus.
What I wish I'd understood thirty or forty years ago is that scrubbing with soap is bad. I think half my improvement is from stopping hot soapy baths and nightly scrubs in front of the sink (which probably weren't properly rinsed, either.
Morel, thanks for your input. May I ask what you wash "the area" with? My gyne said to use Dove bar with no scent, etc., but I would think that would cause drying but I'm not sure what I should use.
Zara, thanks for your thoughts too. I currently am on the clobetasol twice daily, so I don't have "off" days but Morrell mentioned she uses the creams/oils on top of the Clobetasol so I'm thinking I will try this.
Thanks again, girls. It sure helps to compare notes with other sufferers.
Hi Kiki,
You should ask your Doctor to prescribe an emollient to wash with, I use Hydromol which I get in 500ml tubs for the price of a prescription, you can buy it over the counter but it's much more expensive. There are other makes available too. It's brilliant for LS as ANY kind of soap is a no no. I've just been away from home a few days and forgot my Hydromol, I bought some Sanex Zero shower gel but boy am I suffering now and that's supposed to be kind to skin and have no perfumes or soaps added! Hydromol is great to use on your face too!
Best wishes,
Hazel
By the way, you can use the castor oil/coconut oil mix as many times as you wish every day, as it has no pharmaceutical content you are not "dosing" with it, just using it as a balm.Also, I have found that it knocks over basal cell carcinomas pretty quickly, apply as often as you like, pick the scab off the lesion and reapply. I removed a couple on 3-4 mm diameter lesions within a week from my face. My medico was stunned by the result, had wanted to excise them. Not a guaranteed cure, but I have found it works, and no recurrence showing up 12 months later. No scarring is another plus.
Cheers and good luck.
Zara, where do you buy castor oil and cocoanut oil? I'm in the US so I don't know if I need to go to a drug store, such as a Walgreen's or a health food type store as in GNC? Thanks again for your help
I live in the US, you can buy the cocunut oil in the grocery section where they sell Crisco and other oils, it is in a canister, the caster oil is in the area where they sell prescriptions and other health needs.
I used Dove soap for years, and the doctors do tell you to use non scented Dove. I recently bought Vagisil, moisturizing wash, it is supposed to be for sensitive skin for this area, but I do not find it as soothing as the Dove soap. Dove is more moisturing soap than the Vagisil, don't think I will buy any more of the Vagisil.
Kiki, I'd say Dove is NOT OK, it's soap and is still going to remove all your 'good' bacteria. I've just been using plain water for a couple of months now. It's counter-intuitive for someone who's been pretty compulsive about being 'clean' down there forever, but it seems to work. I use wet toilet tissue after a BM.
Kiki, definitely do not use soap of any kind. If you get prescribed one of the emollients from your GP that is all you should wash with. I use Epaderm, thicker than Hydromol. It looks like goose fat but actually mixes with water to make a beautifully creamy wash. Just put some on a wet sponge and wash with that. Relief. Then use Clobetasol leaving it on for at least one hour before applying Epaderm liberally to moisturise. I use this every time I go to the toilet. Keeping things moist, soap, perfume and urine free will enable the LS to calm down. I also use sensitive skin babywipes when out which don't seem to affect me.
Chrisy-Does Epaderm soak into your skin so that you're able to wear clothes without getting it all over them? This does sound like a good product
Chrisy-I just ordered Epaderm after checking out all the suggestions and I can't wait to give it a try once it arrives! It'll be 18-26 days until I receive it, so I'm trying to be patient.
Thanks to everyone for you suggestions. I'm glad I've got you all to share our thoughts☺️
Kiki55,
It does soak into your skin a bit but a lot remains on the surface to act as a barrier. I use panty liners to protect my panties. I wash with it all over my body but rinse it off. It still moisturises when you do this. Good luck.
Kiki, you should ask your Doctor to prescribe it, it will be much cheaper and you'd probably get it quicker as the pharmacy would order it in for you if they don't have it in stock. I use Hydromol as mentioned in an earlier post it's also a thick emollient just like Epaderm which can be used in exactly the same way.
Good luck
Hazel
Hi I have also been recently diagnosed with LS. I have spent the last 12 months wondering why I was in so much pain. I went from one gynecologist to the next and no one really had any answers for me. I finally saw a Dr. who said I had LS. She put me on a regimine of clobatasol which didnt seem to help all that much. What has helped relieved most of my symptoms. I bought vitamin e capsules which i open up and apply the oil directly onto the problem area. I also recently purchased perrin naturals cream comlplete and apply twice a day. It is a little bit expensive but I've been desperatly trying to get rid of my symptoms. I hope this helps. LS is miserable.