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

    There were years of calm for me. I had a long period from age 38 to maybe 47 where I had frequent great sex. I've had it for 62 years mostly undiagnosed. I got so used to having a long, deep fissure in my perineum that wincing when I peed seemed normal to me. It always came and went with no help from me except for some Vaseline. The itching and burning came and went, often confused with a yeast infection, which I'm sure I treated too often, now that I know. The other symptom that I normalized was big honking boils in my groin from the time I was a teenager. They don't put that in the short list of symptoms but it was a boil right over my fused clitoris that got me into emergency and to a diagnosis last summer. My perineum was flared at the same time. The one thing that has disturbed my sleep was the couple of recent long bouts of the rash spreading down my inner thighs. Cotton pajamas are the only answer to that and no long walks in corduroy jeans.
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  • Posted

    Oh dear, we do put up with a lot! Thanks for reply + so sorry to hear how bad yours is. At night I don't wear pj bottoms or anything now, I go for a wee and douse the area with cold water to soothe it, then dab dry. Here's hoping they can find a cure some day!
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  • Posted

    It's a special cross to bear, because it's invisible and unsuitable for polite conversation. I don't really have peeing pain these days. Sounds like you've got it covered. I wonder if that white cream we used on baby's bottom would provide a barrier to urine? Probably irritating in itself.

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  • Posted

    That white cream for baby bottoms provides me with MUCH relief. There is something in it that " soothes baby's chapped bottoms" and it is also used for diaper rash relief too. I'm in the US and it is called Desitin over here. This soothes my flare ups everywhere. A lot of times I actually use this instead of my steroid ointment. I definitely have some times that are worse than others and right now I'm having a "bad" time too!
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  • Posted

    Interesting that Desitin is just white petrolatum, not much different from Vaseline petroleum jelly, which I think is great. The two creams that dermatologists always recommend are Eucerin, which has morphed into so many fancy products I'm not sure which is plain old Eucerin Cream (which I have had to find out the hard way that it has has *lanolin alcohol* in it and throw a big tub of it out more than once over the years). And Glaxal Base, which is water-based and lanolin-free. It's turned into a big line of products, too.
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  • Posted

    Thanks for the ideas about different creams - at the moment I am desperate to try anything but the trouble is that've I have already amassed loads of tubs of stuff and because I am looking for a miracle cure, I probably don't give them enough time to kick in.

    Sorry to hear that you are also having a bad time too Mary, hope it is not aggravated by stress etc? I have just started to keep a food diary as I feel quite 'acidic' in myself! Went out with friends last night, had a 'sensible' meal of sea bass + veg and yet still feel very bloated etc? Very probably the red wine was a mistake!! Mind you, I always drink loads of water as well .

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  • Posted

    I don't know how long these bouts can go on for. I am having a pretty long bout at present as eating and drinking was a bit out of control over Christmas and I am finding it difficult to get back into a normal rhythm. I know one thing which concerns myself and that is that I can never go for more than four days without my dermovate. I know you are advised to keep using it until the flare subsides, but the flare can go on for weeks and you can almost feel your skin disappearing after steroid use!

    I am a great believer in barrier creams, as it isn't always possible to wash and cream if away from home. These do seem to keep the wolf at bay!!

    Hope you get relief soon, Barking and Mary. xx

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  • Posted

    I've been a steroid hater for twelve years, having gone cold turkey from psoriasis treatment. I toughed out a horrible year-long flare of it, along with menopause. So you can imagine how I feel about using it in the one place derms said NEVER to use it. But I'm a believer at age 62 having seen the photos of old ladies' totally closed-over vulva.

    My gynae says at least twice a week FOREVER. That means never going more than four days.

    Maybe barrier creams can keep us down closer to the twice a week and not up near daily. I try to remember that it's only a few square inches compared with my entire arms and hands, neck, ears, face...

    LS makes the skin fragile. So maybe steroids cancel that effect out more than they would thin healthy skin.

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  • Posted

    Desitin and nappy cream both have zinc oxide. I think that is one reason it provides relief. I always buy the original Desitin PASTE. For some reason the creamy nor the ointment work for me! My dermatologist told me that steroid ointments actually thin the skin and that is why I am supposed to put on thin coats instead of putting a thick coat on my skin.
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  • Posted

    I read somewhere exactly how long a squeeze of steroid cream should be spread on how many square inches. I don't use more than three small pea-size squeezes in one night's dose.
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  • Posted

    This is my first post. I went to the doctors about 8 months ago with a very itchy patch on one leg, was treated was lots creams nothing worked. After about 4 months, lots blood test, scans, I was diagnosed with LS never ever heard of it ! I am 65 and it kept me awake all night scratching. Dermatologist gave me some sinepin I take 1 a night it helps me sleep, and in the morning I shower with hydromol emulimt then hydromol moisturiser all over helps with the itching, it is a lot better than it was it's more on tummy now just hope that's it and all finished but after reading all your messages not so sure now ! Also have thyroid problems on warfin and suffer lots with palpitations , lol bet u all think I am a right moaner, just nice to hear I'm not the only one with this nasty skin complaint . Sorry to go on !!
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  • Posted

    Hi Carolann. Your situation convinces me even more that psoriasis and LS are related, which my gynae agrees with. In my case, the LS is more insidious. Right now my psoriasis is mostly a bit of scaling on my head, but I've had huge awful flareups over large swaths of my body (usually when I'm going through an emotional upheaval or a big change) that sound like what you're suffering with. I find it disturbing how many women our age are getting this so late in life. LS after menopause has been around for many many years, but with psoriasis, I suspect our poisoned planet has something to do with upsetting our immune systems.
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  • Posted

    Hi Morrell yes I think you are right as I had to visit my dermatologist on Friday and I have about 6 itchy spots come up on my chest and after looking at them he said that it looked like psoriasis coming up there as it is a Different spots / rash that's on the rest of my body. First time in my life I have had any prob with my skin. Seems I hit 55 and they throw everything at me lol ! My doctor says a lot of it can start with stress, have had a bit this year so maybe that's it, hope yours gets better soon, it's the itch that drives me mad ! Grr lol
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  • Posted

    Hi Carolann,

    Stress is the best place to start. I was a serious Buddhist for twelve years and unless my life is in complete upheaval, I can mostly succeed in watching my mind and staying on an even keel.

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  • Posted

    Hi , I have had LS for many years misdiagnosis for 1 year , then finally after a truly painful miserable time a

    mature GP recognised, the now mess of a vulva , I have been seen every 6 months at St Mary's London ,

    I have Autoimmune hypothyroidism and this condition is definitely a condition caused by this .My labia has

    gone , what I have found is you have to be vigilant examine yourself weekly for any changes , use your prescribed creams carefully and consistently , absolutely no soaps anything perfumed and if you are still having periods only pure cotton pads . Trimavate or dermavate

    Are brilliant at controlling the symptoms , driprobase is a very good moisturiser . An understanding husband is a must !! And a very good female gyno

    The lichen has moved to my rectal area and this has caused a lot of problems , but in all of this I think the most detrimental effect has been on your femaleness , in all of the chronic conditions that I have this has had the most impact . Pure organic coconut oil is brilliant to put in your bath and on your skin . What they don't elaborate on are the other health problems r, recurrent urine infections , skin closure over your clit, and shrinkage of your vagina called vaginitis.

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