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.

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  • Posted

    Hi Kathleen. Interesting that you haven't been prescribed the strong corticosteroid cream/ointment most of us have (that's what the recent flurry of alternative advice has been advising against) but you're managing without Clobetasol or Dermovate.

    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.

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    • Posted

      The fatty ointment goes in better apparently so it must be the Advantan fatty ointment as opposed to the cream. I used to have the harsher ones but been using this one for quite a few years now. I seem to need more than a pea sized bit  which is good that I have a less strong cortisone creams. I have diabetes, Crohns, trouble with my gums and arthritis. I had a shoulder reconstruction last November and a fall in hospital on day three which affected my knee. An MRI showed bone one and a tiny meniscal tear. Everyone's story is unique. It is good to vent and listen to others. Hope everyone is managing to have some fun and enjoying life despite LS.
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  • Posted

    I read an article last week while looking at the pros and cons of the much vaunted 5:2 diet- whereby one reduces the calorie intake to a quarter x2 days a week and eat sensibly for  the rest of the week.(no alcohol either) The article didnt relate to loss of weight - which I need to do  to reduce the blood pressure - but to the response that 72 hours fasting a week had on the body. According to the article the immune system was boosted considerably when this regime was carried on for 6 months. (It was in a medical journal )

    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.

     

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  • Posted

    Hi Suedem.  As i understand it, the problem with autoimmune diseases is that they are the resut of an overactive, misdirected immune response, where the body attacks its own cells. If this is true, then probably the last thing we need to do is boost our immune system!

    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!

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    • Posted

      Oh, Kate, that's the worst misdiagnosis yet!

      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.

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    • Posted

      Oh you poor thing...herpes indeed! I am unable to swim too - it isn't only the chemicals it is the water rushing inside me cos of lack of labia minora that i find uncomfortable

      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

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    • Posted

      sorry to hear you had to give up horse-riding? How old is your horse? I hadn't thought about that. My mare is 36 now so I haven't really ridden for a while. 
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    • Posted

      Hi Marey. He's coming up to twenty and a bit stiff, ok for light hacking but not much more. The really annoying thing for me is that I used to do a lot of competitive dressage on a friend's horse as well, but as you can imagine, riding with a deep seat on a dressage saddle  and LS do NOT go well together!
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    • Posted

      oh kate...you sound really talented....we've got toget you sorted out! May I look at your profile and make suggestions? Perhaps meet you on the alternative section. There's a woman on-line with us who has cured herself, I know someone who has and she's written a book, plus I'm making progress and devising a strategy. I think thats what its all about. 
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    • Posted

      Hi marey. Thanks for the offer but things are as sorted as they're going to be I think.......the LS is fairly stable at the moment , but the labia that are gone arn't going to grow back and its there that the discomfort from tight jodhs, riding etc arises.  Anyway, I've bowed to the inevitable at this stage and moved on to dog agility which one can do in baggy tracksuit bottoms!
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    • Posted

      welcome! Glad you're ok. Great you're doing the dog jumping. Did you used to do horse and hound at Pony Club? Think that s what they called one of the competitions where pony and then dog went round.

      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?

       

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    • Posted

      Hi Marey. Nope, didn't do pony club, didn't have a pony at that stage, but here in Ireland we have the Irish Association of riding clubs, and adults can join and compete at dressage, show-jumping and cross-country at various grades, and I used to compete in the open dressage. I have BHS 1and 2. And you?

       

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    • Posted

      I used to have lessons as a child.....not many but a few. Then took up riding when I had the loan of a 13.2 hh chestnut mare with flaxen mane and tail. My daughter loaned her too til I got a pair of greys, Daisy 14hh and eventually Little Jo 11.3hh...after various other loans through the height ranges. He was a jumping pony and he taught my daughter a lot. The two of us used to have lots of fun on the beach he would lead off Dazz (Daisy) which was a great way to reach my daughter to canter. She joined Pony Club quite late as I wasn't really aware of it til later but then she way eclipsed my riding style and I learned so much from watching...how to engage the hocks and free up the forehand. I had just been a happy hacker before with no particular technique....except I had to ride bare back on a loose rein and  help round up the cattle...owners requirements!!

      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. 

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  • Posted

    I have noted there are a couple of people on this site from Australia and from Melbourne- perhaps they are attending the Mercy too? Would a request to your Gynae/ Dermatologist to put you all in touch with each other be helpful?

    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

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  • Posted

    That would be good if other Aussies could say if they are in or near Melbourne. Any Aussies? Speak up!
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