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Hi everybody! I am watching with horror what is happening to me underneath. The labia are fusing and really hurt when I inadvertently pull them apart. This morning I applied water whilst having a shower and my fingers must have dragged against them - it was as if someone had put a hot poker there. I have red raw patches and I always splash water on myself after having a wee as the urine stings/burns and then dab myself dry. I wash with Dermol and then apply Epaderm once dry. Itching is one thing but the physical changes are really disturbing. I am due to see gyny dermatologist on 28th but I don't really know what to ask - clitoris is exposed and rubbing, weeing is painful and now even simple washing is problematic. I have also had osteo-arthritis diagnosed along with hiatus hernia, possible glaucoma, cataracts, IBS and Barrat's Oesophagus - all since I turned 60 2 years ago.
Any suggestions/ideas which I can put to my gyny (sorry, I forgot to mention the atrophied vagina!) would be welcome as desperation is setting in. Help!
Happy Easter fellow sufferers!
2 likes, 11 replies
I'm so sorry to hear how terrible you feel with these wretched auto-immune diseases. There are so many of them nowadays it's hard to keep up and no-one seems to know what's causing them. Regarding Lichen S though, it seems that sufferers have to find what suits them best as everyone is different. What works for one may not work for another, but basically the most important and effective treatment is to use Dermovate or similar (steroid cream) for a few months, tapering off very slowly from twice a day to once or twice a week for maintenance. Use only a pea-sized amount - more is better. It really is a miracle treatment so don't be afraid of it. In between it is important to keep well moisturised and people use anything from Vaseline or emu oil, or coconut oil or even nappy cream! The aim is to keep urine from touching the sore areas, so it may be a good idea to use a squirt bottle of water straight after weeing to cleanse the are. As to the loss of architecture, some doctors will give you oestrogen cream which can defuse the skin, but this depends on your doctor and your hormones. There Is a very good LS self-help group at Yahoo Groups - Lichen Sclerosis, which has no end of very helpful tips and advice. It really was a life-saver for me. I wish you all the luck in the world and please rest assured - LS is very manageable with patience. My best wishes.
this was told to me by myngyneocologist and I use Emuvate using the same method as Annie
i also have a collapsed bladder for which I am awaiting a new pessary to hold this up
I do pelvic floor excercise so three times daily
and I never wear underwear or trousers or tights
again advice from my Gyneocologist
as Anniebsays we have to try what suits us
but I used to squirt with water as I had the same problem as you burning urine this I told the gyneo and she advised I use the double base gel
this can be purchased in chemists and google it and find other suppliers
I receive mine on prescription
I find itexcellent
I meant "more is NOT better" when using steroid cream!
So sorry to hear of all your problems. Apart from making sure you get a prescription for a steroid cream (eumovate, betnovate or dermovate - various different strengths) it is worth checking if anything you are using has an ingredient to which you are allergic. I am allergic to lanolin, so check for that, and anything else that is in all the things you are using.
I had to try eumovate which didn't work, and then betnovate which did, and a variety of different moisturising creams, until I found cetra ben which works like magic for me. It's trial and error I'm afraid.
This sounds like me before my diagnosis last summer. Before that I would never have imagined I'd be singing the praises of a steroid medication, but you need a prescription for Derovate (Clobetasol in North America) as soon as possible. When I had my crisis, my labia had just finished fusing over my clitoris and there grew a great, painful boil right there. I went to emergency after it popped. He precribed antibiotics, noticed the 'atrophy' and referred me to the gynae who diagnosed LS on sight, no doubt, no biopsy. At the time I had painful rows of fine fissures along the creases around my labia. As soon as I got my presription it all started to calm down.
I'm 62 and have had LS (lumped in with psoriasis, never noticed by multiple gynaes). I do think it gets worse at our age. It can suddenly start moving fast, so there's no time to try alternatives to the steroid cream. It's for life.
Do use lots of oily creams and ointments as well. No soap.
I believe all these auto-immune things are thanks to our poisoned world. We're the first generation to live our whole life in the soup. Let us know how it goes. I'm sure you'll get comfortable soon!
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