Grandma with LS ... Share your story?
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I only want to hear from people following medical advice from specialists. We are not here to advise other people towards alternative medicine. I am 70 years old this Xmas and attend the mercy hospital in Melbourne and am very satisfied with their treatment and support. Any other Aussies on here? I use Advantan fatty ointment and Dermeze as a moisturiser. If my Crohns flares so does the LS. I am happy to support others who are similar in their treatments or who just need to vent and have someone listen about LS. I have had it for nearly 20 years. I have learned to live with it and happy to share my story.
0 likes, 15 replies
Morrell1951 kathleen65757
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I'm 62 and was diagnosed by a young gynecologist last summer, after having it all my life. LS had ended my sex life with last flare & infection, which finished off the zipping up of my clitoral hood, but the Clobetasol and much oily cream seem to be keeping it pretty calm. I've also has psoriasis all my life. I find it interesting that the things I'm doing that might be good for my immune system (clean diet, low stress, no chocolate, well-dusted house, shiatsu massage very 3 weeks) have completely cleared my psoriasis, but the LS marches on. I usually have a white patch on my perineum and the tears in it are less frequent and shallower than they were pre-Clobetasol.
kathleen65757 Morrell1951
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suedm kathleen65757
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I use Dervovate when I have a flare up - or at the start of an itch and Diprobase to wash and moisturise the area at least daily. I notice that I itch when the stress levels increase, or I am emotionally upset. Food, booze nor climate temperature seem to be related to my flare ups.
kate207 kathleen65757
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I had quite bad LS, its now more or less under control and I went from Clob twice daily to over the counter Hydrocortisone cream , which is very weak, once daily. This delivers a lot less steroid than once-a-week Clob but seems to be enough to keep things in check. I also find it helpful to apply the odd dose of anti-thrush cream - I never had an issue with thrush before the LS, but now find what I think is the start of a flare can sometimes simply be thrush - my dermatologist told me that skin which has been damaged by LS is very suseptible to thrush attacks. I avoid soaps round the vulval region, eat load of fibre to prevent constipation and the resulting anal tears, and am very careful about the seams when selecting jeans or trousers.
Sex is possible with care, but I find I can''t swim in pools with chlorine, and I had to completely give up horse-riding and retire my horse, as more than a few minutes riding will start a flare up -very very frustrating!
I find it awful that so many of us had such trouble in getting an accurate diagnosis - at one stage I was told that the ulcers which were spreading over my vulva as the skin broke down were genital herpes -you can imagine what that did for relations between my husband and me!
Morrell1951 kate207
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I'm so glad to hear "my dermatologist told me that skin which has been damaged by LS is very suseptible to thrush attacks." That's exactly what I thought, and mentioned on the alternative medicine thread on LS. And your point about not making the immune system even more over-reactive is excellent.
suedm kate207
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I do only use the Dermovate when I need it - and that is less than 1-3 monthly- I do try and keep upbeat and smile and laugh as much as possible. I had a difficult marriage and I didnt smile never mind laugh for more than 10 years so now I make the most of my freedom!- We were married for 40 years. If I do have a tiresome flare up I will go commando if i can and wear long skirts- I do need a petticoat tho otherwise the skirt can get caught up in the cleavage!
I continue to take HRT - I have been on it for 30 years and it was when the hormone levels reduced when it was decided to wean me off(rather too quickly I think) that the LS advanced- it was at the end of a particularly difficult 5 years of a complete pack of "stress making" cards! (divorce selling and building a house - on my own -financial concerns dying relatives, estranged family, travelling, away from social network etc)
The last time I saw a gynae I was discharged from routine visits as I was told it was quiescent (NHS budget cuts)
Re fasting -I just wondered whether, according to the article I read, that our damaged immune system might be regenerated back into normal behaviour....as it seems to be effective in killing of malignant cells...Just a thought. However I can find no evidence this is the case. Just returning to the trying to lose weight mode
marey kate207
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kate207 marey
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marey kate207
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kate207 marey
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marey kate207
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I think I'm going to try putting up something in the alt medecine section by way of theory and in the hope to hear more from folk who have cured.
Did you start in Pony Club and do any BHS exams?
kate207 marey
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marey kate207
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Well done for doing your Parts one and two ...brilliant! I did start a course at Pencoed here in Wales (my mum was irish by the way...from Dublin but her family came from the west coast...where are you on the emerald isle?) but didn't progress it.
I guess you'll still enjoy visiting your horse even if you can't ride. Is he out? Dazz is running with a herd ... as a barren lead mare she's taken charge of two little foals that have come along....so she's officially an auntie. Does your boy have any special friends? Whats his height and breed? Dazz is a section c welsh cob and max a chestnut anglo arab.
suedm kathleen65757
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In Birmingham UK one such department facilitated a support group that many found beneficial, especially when the issue of sexual activity was raised. Many young brides were in a dreadful state about their particular condition. I am long in the tooth, and when I needed the support and questions answered ii found no one to turn to, so I coped on my own
kathleen65757
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