Flare ups of LS

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Hi there all,

Just wondered if anyone can say how long each bout of LS seems to last? As a relative newcomer to this 'Nasty', I can only say that it was months before it was diagnosed and then it seemed to calm down. This time it has gone on for weeks and only seems to be getting worse despite creams, potions and strategies to avoid urine irritation. It has really affected my sleep and I feel like a zombie most of the time. I know it is a condition we are stuck with but there are calmer moments aren't there?

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  • Posted

    Hi Nana,

    You've convinced me to get some organic coconut oil. My LS is most irritating between my buttocks around the anus. When I was still having sex (till age 61) and before I was using clobetasol (Dermovate) the fissures in my perineum were the worst symptom in combination with my shrunken vaginal opening.

    The thing that hindsight tells me most vividly is that from my early twenties my clit was beginning to be covered, so orgasm required mucho friction, which is terrible for LS and also for thrush. If I could be ever-so-frank for the young women here who still want great sex, the best thing that happened to me (in my mid-forties) was discovering female ejaculation. It took the emphasis off the clitoris and put it on the erectile tissues on the roof of my vagina. After I discovered all that (thanks to a CBC radio show, of all things) I never had sex without being flooded with fluids. Probably added years to my sex life.

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  • Posted

    I think a lot of women give up especially if your partner doesn't connect with how this effects you emotionally .

    I can remember trying to explain to my GP the effect this condition can and does have on your relationship, I could deal with all the other stuff but when you have an outbreak as I call it it totally brings you down , last year I had a mesh put in to support my bladder what a disaster they had used zinc in the prep and I ended up with such a severe reaction all my good work in maintaining the skin contact dermatitis spread got infected absolutely do not want to go there again , I had acupuncture with a brilliant homeopath, who listened and rebalanced me .

    Your anus and rectum area is vital that the skin is kept supple and cleaning yourself after do not use toilet paper directly on your skin put driprobase on the paper first you won't split your skin then flax seed and figs are brilliant to soften the stool . . The other tip my gyno gave me was to layer the creams steroid first then driprobase and sometimes add to the mix baby bottom rash ointment keeping urine off York skin directly stops it stinging if you have a split in the skin . I can remember at the height of not knowing what was wrong having to pee in the bath with a shower water on my vulva as I peed because it was so painful

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  • Posted

    This really makes you wonder if the whole thing isn't about our skin being allergic to our own bodily fluids. I know when my psoriasis is bad I'd rather get dish soap on my sore hands that have them soaked in sweat in gloves.
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  • Posted

    I have been thinking that there is a dietary lifestyle element to this. The pattern of LS at the start is a characteristic figure 8 of white skin around the anus and urethra. this might indicate that something we excrete or pee out, is causing the problem, which then starts to spread as the architecture of the area changes.

    As the labia go, the stream of pee is no longer directed, but spreads over a wider area and if this is an isue, whatever might be giving us the problem is therefore also spread over a wider area - as is the LS.

    I have been trying to find studies on Google Scholar and there really is very little out there. I want to find out how the composition of pee and poo alters as one gets older for instance, Are we still able to tolerate the same diet that we had when younger?

    There are lots of questions which must have been asked before, which could help us I feel sure. One thing I am fairly convinced of is that topical treatments are only part of the answer. We must be able t control by making changes in out life styles and I would be prepared to make radical changes if it meant that I could control this blasted thing.

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  • Posted

    Good points, Margaret. Someone on another thread said that dermatologists are very knowledgeable about auto-immune disorders compared with Gynaes.
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  • Posted

    Well as to that, I was not at all happy with my local hospital dermatologist. There were a variety of reasons, but I have actually asked to see a gynae this time. I will have to wait 16 weeks however.

    My gut feeling (if you'll pardon the pun) is that I would like to work with a nutritionist. The idea of trying a low oxalate diet appeals, but getting information about one seems impossible. My thinking behind this is that there is a mechanical cause, possibly from crystalline deposits on the skin (like those found in kidney stones). My father suffered from kidney stone and his mother I believe also had LS although it was never talked about. She would not eat oranges and used to say that although she liked them, they didn't like her. She never elaborated on why.

    We are all fighting in the dark, but if anyone has tried anything that seems to help, it would be good to know.

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  • Posted

    Hi Margaret. I am a qualified nutritionist so may be able to point you in the right direction. You need to look for a nutritionist with BANT after their name if possible. This means that they are members of the British Association of Nutritional Therapists. They will have to have qualified from an approved college and keep up with training by attending seminars in order to remain a member. A nutritionist will take a holistic approach - checking health history, symptoms, family history, diet, supplements taken and medication taken. They will then work with you to find suitable changes to your diet and suggest supplements for you. I personally feel very strongly that LS is an auto-immune condition that is made worse by unrefined diets that are high in sugar. Diets such as low GI and paleo tend to work well but a nutritionist would be able to tailor a diet for your own particular needs. Crystalline deposits are often caused by taking inappropriate calcium supplements (or foods with added calcium). Calcium carbonate is, in my opinion, the worst offender. Diets that are very high in milk and cheese can also have this effect.

    You need to be aware that there are a lot of 'nutritionists' out there practising with very training. This can be dangerous - particularly when it comes to supplementation. That is why I suggest making sure they are a member of BANT.

    Hope that help you!

    Sue

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  • Posted

    Thank you very much Sue. I'm not sure if this can be achieved via the NHS or if I would have to pay. I imagine the latter. How do I even begin to find a nutritionist though - where do I start? You've already been very helpful so I feel cheeky asking.

    regards

    Meg

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  • Posted

    Hi Meg

    It is very unusual for nutritionists to be available on the NHS. Usually dieticians work with doctors. There are very subtle differences - nutritionists are much more holistic in their approach. If you google BANT, you will see the website for the British Association of Nutritional therapists and then you just click on Find a Practitioner.

    Good luck.

    Sue

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  • Posted

    Brilliant! thank you Sue! I'll report back if there is any progress.

    Meg

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  • Posted

    Hi folks, I noticed that one of you mentioned coconut oil; great stuff, but there are a couple of others to consider, especially mixed with coconut oil, castor oil and tea tree oil. Also consider making a paste with mixed coconut/castor oil and zinc oxide. Here in Australia a paste of castor oil and zinc oxide can be bought, but my feeling is that the mixed oils are better, so you need to become a compounder. Addition of small amounts of tea tree oil should be tried; tea tree oil is soothing, anti-fungal, and anti-inflamatory. This complaint is very much like psoriasis, so it will respond similarly; the secret is finding the right treatment. Try to keep away from strong cortisones, hydrocortisones work very well and don't thin the skin. Hope this helps. Cheers.
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  • Posted

    Zarathustra, as much as I was a hater of cortisone cream as a longtime psoriasis patient and even suffered the blowback flareup of going cold turkey, I disagree with avoiding strong cortisone for LS.

    Those of us who have had quick scarring, disfigurement and completely sealed-in clitorises know that you can't mess around with LS. Psoriasis generally doesn't scar, so we can afford to experiment. The treatment I'm getting from my gynae is clobetasol (Dermovate in UK). In six months it has calmed a really bad flareup that included a huge painful abscess right over my clitoris.

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  • Posted

    This is so true, keeping your vagina area supple is essential as the skin shrinks and tightens the only solution is a cortisone cream, Trimavate is a good alternative to Dermavate but both essential , when your labials shrink and disappear peeing is difficult as you tend to 'spray your stream of wee . Because this condition can become cancerous , close monitoring is a must , I attend a seniors colposcopy clinic my gyni uses this to look very carefully at any potential red areas , sometimes takes a skin biopsy but worth the discomfort to have peace of mind . One routine l would suggest is use surgical gloves to apply the steroid or if not immediately wash your hands , lam convinced after years of using steroid this has caused cataract in both eyes ( both removed now but there is a definite link )
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  • Posted

    I have cataracts and yet I always wash my hands very thoroughly after applying the dermovate! I have often wondered if the cream would affect my hands, but it never occurred to me that it would also affect my eyes!

    What a pest!!!! Thanks for pointing this out, I shall be even more diligant in future!

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  • Posted

    What an amazing forum this is! I believe that I've had LS for many years but have been fobbed off a few times by GP's who didn't bother to examine me and just said it's an all part of the ageing process, have some pessaries or it's a yeast infection.

    Finally after a few years of soreness, itchiness, uncomfortable sex (luckily Ive got a sympathetic husband!) I saw a lovely GP who was shocked at what she saw when she examined me. She diagnosed LS and prescribed Clobaderm, which worked like a miracle and when I went back she was amazed at the improvement.

    The problem is I didn't know I've got it for life and that it would flare up again ... :-(

    I have been through a pretty stressful time recently and not eating healthily and lo and behold - back it came with a vengeance. I called my GP and she prescribed the same again twice a day - then I found this site and am determined to get this under control.

    I cut out wheat completely about a month ago and pretty much all sugar - difficult - a glass of wine at the weekends still of course :-) and try to eat really healthy again and trying not to get stressed! I'm at the end of the 2 weeks of Clobaderm twice a day and am feeling great - so far...

    Sue very kindly gave me the details for the CMO cream and although I haven't tried it yet, that will be my next call. In the meantime I'm going to use virgin coconut oil and I've got Propolis cream too so planning to keep the whole area moisturised and see what happens....

    I don't use any soaps or shower gels etc

    I'm pretty sure this is an auto-immune condition too and obviously being clear of symptoms now could be either the Clobaderm or healthy diet/lifestyle... will have to see what happens...

    I do feel sorry for the younger ladies on here, I'm 55, had my children, menopause come and gone and have a supportive and understanding husband - still managing to have a sex life too (not quite the same as back in the day but hey ho!) but for the youngsters it's so important to have this diagnosed early, more research carried out, raise the profile of it etc . so that it can be managed. It's taken me so long to find out anything - and most of it was on here ! Sorry I've gone on a bit here haven't I :-( Great forum - thank you ! Jan x

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