litchen scleroses

inspired sue!!

How much in your tube? I go through one a month of Advantan fatty ointment of 30 m. It is only a small tube. My LS goes from front to back so need more than a pea sized amount. My specialists said what you eat does not affect it. Stress does I believe and when other ailments play up so does the LS. I do not eat sugar anyway.

The tube that i am referring to is 100 grams of dermovate and the consultant said that this should be enough for 3 months and if not i should go and see my gp for further advice. Mine also covers the area as yours does

all the best

Mine is a third that size so thankfully I am not overusing it! I do use more than a pea size amount though! I had a shoulder reconstruction so it was hard for me to do with my left hand and still is actually. When I had a Crohns flare my LS joined in! I have just been diagnosed with diverticulitis as well. I am also a diabetic so suspect auto immune is a big part of LS. Hoping to have some good health months now!

Hope things improve for you

Doreen

Is that because the symptoms were not so bad or because you were worried about using it?

A bit of both. I used corticosteroid ointments for thirty years on big areas of my skin for psoriasis. I think I did some damage by going off them cold turkey. That was when the LS really fused my vulva. So, although I know I need to use Clobetasol forever, I've erring on the side of a BABY pea-sized blob. I think I'll talk to my favourite pharmacist.

what do you mean by fused??

I'm glad you don't know what that means. You're lucky. The two sides of the labia minora (inner lips) 'zip' closed over the clitoris. So now there's smooth flesh – no architecture – with only a vague lump where my poor insensitive clitoris lies, buried for all time.

I have atrophy too! Clitoris gone and inner lips gone! I am scared that in the future I may not be able to wee. I attend the Mercy Hospital,in Melbourne, Australia, and they said they will,keep an eye on it but still a concern. My lovely GP has said it would not happen suddenly but gradually so here's hoping! When it happens they have to cut an opening which really scares me!

Kathleen, sorry to hear you're like me. So, we use our prescriptions. It slows things down. Weeing is my main concern.

Hi Lainimac, normally one uses the steroid until the flare up is improving then one should gradually reduce the number of days one uses the cream/ ointment untl the next time.

Creams are not absorbed by the mucous membrane of the vulva as efficiently as the ointments. I had a fight with my gp over the issue as i wanted the ointment and she decided on the cream- I now have the ointment- but i dont use much or often - only when stressed and itchy. having said that in hot weather the greasiness of the ointment can be tiresome on the clothes! but I find the cream clumps and thus more irritating

As to the thinning of the tissue  the balance of risk is the most important factor. Steroids reduce the inflammation and scarring - that could be a precursor to malignancy- a small risk but a risk nevertheless Whereas the amount of thinning is probably better than the scarring or the fissures / paper cuts and subsequent scar tissue.  Don't use the steroids if you dont need it but the advice i was given if you itch  ie need it ....DON'T put up with it USE them! Hope that helps put your mind at rest. Sue

Hi Laini, Sue's right, there's no avoiding the steroid cream/ointment. It's for life, but we can reduce the use to twice a week when things are calm. It's not just for the treatment of current symptoms, it's meant to be a steady low dose to prevent flares. I wasn't diagnosed until a year ago and I think I may have used too little since then. My perineum seems to have narrowed like pants with a too-tight crotch, so leg movements can tear it. The amount of Clobetasol (Dermovate in UK) I've been using has kept things way calmer than they were before. I do give some credit to celibacy, though. Easy for me to say – I'm 62, had two kids and have a husband now who doesn't mind. With all this advertising for Viagra these days, I suspect some older men don't mind retiring from performing. Not speaking for everyone.

Ouch Morrell.I feel for you!

As to sex - there is an expression there are many ways to skin a cat - thus if sex iS an important part of a relationship penettration need not be the ONLY way. I say no more. In my limited experience - I thought men never gave up on physical need....My "hormoneless" (caused by MS) man of 38 years (marriage) suddenly found hormones rearing when a 15 year younger willing hungry female came banging at his door- so to speak! He looks very old now - but i understand is still active! (I divorced after building the house and my stress was reduced!) The condition(LS) only arrived when celibacy was ended and stress was extreme. So do keep up the affection!

Sue

PS I am not sure what the message is - but make sure he doesnt look elsewhere!

I am happier now than i have been for years so all is not bad!

Sue, I do know what you mean. He's very affectionate. We entered this realtionship three years ago with the understanding his side might not work. It did, as it happened. But it was never a requirement. It's taken nearly a year for me to stop worrying about our celibacy and begin really enjoying the huggling, cuddling, hand-holding and (now that he's newly clean-shaven!) good kissing.

Lucky girl! Keep up the good work!