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Causes of Lichen Sclerosus?

Posted , 33 users are following.

marey
marey

What do you think caused your condition? 

Any ideas, theories, inklings? A complete brainstorm opportunity.... 

4 likes, 122 replies

122 Replies

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  • heather99258
    heather99258 marey

    Posted

    Yes, Morrell, you are right about the problem being the minute pockets which harbour urine. Although circumcised men don't usually get it, one had it recur when he got so obese he got a pseudoforeskin of excess tissue overlying the prepuce. I think the reason the research is often on men is that they get very little else in that area and when they do they run straight away to a doctor, the manhood being very precious! Possiby 95% of women's vulval problems are due to other things.

    The problem with thyroid diagnoses is that symptoms and clinical picture are very variable and can be quite vague and nearly always can be due to other things. Blood levels of any hormone are always variable during the 24hrs and they bind to other proteins in the blood , so depending on the assay used the margins of normality are very wide. The rason TSH is mainly used in practice is, that it is the signal produced by the pituitary to signal it is happy with the amount of thyroid hormone for that particular person at that particular time, if you like.  It changes more slowly and in practice has been found to be the most useful measure. T3 and the other variants are very difficult to interpret (the main exception being T3 toxicosis where there is an excess of T3, but almost always the TSH will be low in those cases). There are no substantial studies advising the use of other markers but many alternative practitioners talk about it, but in reality the complexities of measuring it and the changes are not related to clinical underactivity of the thyroid, and they have not been found to be useful in practice. If TSH is OK , you can be happy your body is dealing with any thyroid variability.  Often diet, lifestyle and weight management will be needed to keep the body in it's optimum functioning state.

    To Suzanne I would say stop using most creams and ointments; I got a lot of irritation from most oestrogen products, the Ovestin cream was best but stopped using them as didn't find any benefit for the vulva. Anything put on there over a period of time can cause sensitivity to occur. There is no evidence of benefit to LS from hormones, but naturally as one gets older the vulva will get thinner and more atrophic, and can fuse in extreme old age, but you don't want it to happen any sooner than necessary!

    • Morrell1951
      Morrell1951 heather99258

      Posted

      Wow, Heather you packed a lot of gems into that post! Thanks. I'm relieved to hear you're confident estrogen creams are withoiut benefit to us. I ditched my prescription.

      On your advice, today I've started the habit of applying Vaseline to my perineum before peeing and to the anal surround before Number Two.

    • suzanne00
      suzanne00 heather99258

      Posted

      Hi Heather--Thanks for the thoughts on the hormone creams.  I will no longer use them on my vulva because I do wonder if the carrier creams or hormones are a source of irritation.  However, I was not using them to treat LS, I was using bioidentical hormones when my own hormones were decreasing for the last five years or so, long before I developed LS.  I use these hormone creams to maintain my body at more premenopausal hormone levels--I'm hoping to stave off some of the changes of menopause like bone changes, heart disease, vaginal atrophy, skin changes, etc.  I am actually very grateful for them.  My gynecologist said that my vaginal tissues (except where I have LS) are plump and healthy, so I think that it helps maintain the pelvic floor, too. My practitioners monitor my blood levels once or twice a year to make sure that the hormones are at low-normal levels.  Anyway, I know that this can be a controversial area but I've done a lot of looking into the use of bioidenticals, and so far, feel it's a good decision for me.  However, I will use the hormones on skin other than my vulva though and see if it helps with less irritation on those tissues. Thanks again for the encouragement not to add unnecessary and potentially irritating creams to the vulva.  
    • marey
      marey heather99258

      Posted

      thank you so much for your detailed and thoughtful response to all three of us. it was very much appreciated!

  • hanny32508
    hanny32508 marey

    Posted

    Hi Marey,

    The program lets me in today, hoorayyy!!!! Thanks for supporting me in this, Morell and you Marey.

    I was reading about your struggle with the thyroid.  Perhaps I can add my two cents worth:  I'm on desiccated thryoid medication.  This also because the synthetic version may have as a side affect hairloss, the exclaimer said.  My hair fell out too much.  Luckily my doctor provided a prescription for the desicated form.  (with the added benefit of T3)

    Brain fog in your writing sounded familiar as well.  That part cleared up over a long, long period of time when the adrenals were supported with a form of cortisol (nature path version) and other things like "adrenal support"and B vitamins and other.  For a good balance in these things it may be good to visit a nature path who can do a saliva test with you.  Something I have done. Interesting result and gave answers to a lot of things.  Over a period of several years I ever so gradually started to get back to my senses (got my brain back, in so far I have one of course. Ha,ha.) and automatically lost that strange excessive weight as well.  I'm not skinny, but normal.  Not so blown up anymore.  For a woman that's a very welcome extra. 

    With the adrenal's malfunctioning and therefore extremely low level of immunity, I still wonder, was I therefore an easy prey for a thing like LS.  There has yet to come an answer to that one. 

    Hope this will support you in some way.

    Hanny.  

    • marey
      marey hanny32508

      Posted

      yes hanny very much so i am deeply grateful....i've tried the local homeopath/herbalist/naturopath/acupunturist...now i must look further afield out of area to someone in the naturopathy arena with more experience and access to testing...thats exactly what i want...someone to do saliva testing for hormone levels, a hair strand test for deficiencies (there are some charlatans out there), someone able to work with my GP to insist a bit perhaps on my behalf and probably to follow the course that you've taken.

      I really am so grateful hanny THANK YOU THANK YOU THANK YOU!!!

      I absolutely think you've worked out your root cause for LS..and I'm quite sure you will get there in your recovery over time.

      You are supporting me hanny and i hope that this is reciprocal and that I in turn can help you. thank you again. Love marey  xxxxxxxxxxxxxxxxxxxxxxxxxxx 

  • Lula1
    Lula1 marey

    Posted

    Unidentified fungal infection in blood stream. Lichen Sclerosis lesions gradually resolved on sporanox. Sinuses and lungs also improved. Slightly underactive thyroid is probably driving infection along with common variable immune deficiency (IgG3 absent. Poor response to carbohydrate vaccines).

     

  • denise2464
    denise2464 marey

    Posted

    Hi everyone, I'm new here & was diagnosed at the beginning of the year.

    Most of my LS was around the anal area & I have found the dermovate cream really effective at calming everything down.... although after my checkup appointment today I realise I still have problems in that area.

    i was wondering if anybody else on here has found that sitting for long periods of time have made the LS worse.

    i ask this as I am an avid crafter & therefore I can be sat at my desk for 5 or so hours a day. Also there was a period of around a month when I didn't craft & I found my LS improved significantly & I had no problems at all...... since re-starting though the flare ups have returned. Has anybody else found this or are you all much more active than I am? Lol

    • Morrell1951
      Morrell1951 denise2464

      Posted

      Hi Denise, glad you found us! I've had LS for forty years, but was only diagnosed a year or so ago. Aside from the massive flare-up that took me to emergency last year, my main difficulties were tearing of my perineum and what I call 'Ring of Fire' – that sore, red area around the anus that makes sitting uncomfortable – I was always standing up from the couch and pulling my pants away from my crotch.

      The Dermovate worked very gradually and I was happy to have improved over a nine-month period. I started to wonder whether sugar was a culprit (a medically proven inflammatory food – one I accepted more readily than the too-many foods alt-med folks remove from their diets). I didn't even cut out all sugar – just the big hits like cake, ice cream, very sweet desserts, and of course (the worst!) chocolate. This calmed down my Ring of Fire in a couple of weeks.

      I'd cut my two cups of coffee down to one in order to ditch those two spoons of sugar. I started to think about the urgent, loose bowel movements I always had after coffee – how irritating they must be to that skin back there, so I cut out the other cup. (Yes, I had a few headachy days, but then I was 'clean'.)

      Now I have zero ring of fire. Very good, as I too am a crafter and like to spend many hours sitting at my sewng machine or on the couch knitting, etc. I've stopped yanking my pants out of my butt and at my last checkup my gynae said I could limit the Dermovate back there to just right along the crack, because the surrounding skin was clear.

      Then this summer another member, Suzanne, and I realized we'd been pigging out on melons in season and had minor flare-ups. So too much fruit equals too much sugar.

      Denise, we need our crafting to keep us calm, because stress is the other Big Bad Thing. I was sort of worked up over a broken toilet this morning, but after an afternoon of knitting I was my calmest self again.

    • marey
      marey denise2464

      Posted

      Hello denise,

      Welcome to the site! i think you have indentified another CAUSE  or exacerbation of LS.

      As with haemorrhoids sitting for long periods is assumed to be a contributory factor because of the slowed and stagnant blood flow. I really appreciate your observations.

      Yes I agree I think I get increased inflammation from sitting. Thank you!

      Now-a-days desk workers are advised to get up and walk around evey hour, those semi kneeling desks were popular for a while, now there are standing up desks, plus the hot-desking regime keeps people on their toes!!

      I love to sit and read and to write but in view of your observations think I'll look for reasons to hop up and down a lot more....!!

      Many thanks again!! Any exercise / stretch suggestions I'm a slug at the mo ...Lol !! ?

    • Cheetah
      Cheetah denise2464

      Posted

      I haven't been diagnosed with LS, but 'chronic inflammation' shown by the biopsy.  Since I stopped the Dermovate in January, for the biopsy and in order to heal the stitches, the inflammation and itching has gradually returned and I, too, noticed that sitting seems to make it worse.  I was interested in what you said about crafting, as I love to knit and crochet and can often sit for a while in the afternoon.

      My GP told me to use the Dermovate as and when the itching returned, instructions which I found rather vague.  I have been using it every few days, but things are quite inflamed at the moment.  However, I am due to see a vulvar dermatologist in June (I know, a long wait).

      I think I will have to make an effort to stop my knitting and get up at least every hour.  Thank you for mentioning this.

  • Pixel_Pixie
    Pixel_Pixie marey

    Posted

    Pretty sure mine came on due to my hysterectomy (well, to be precise, when I stopped the hormone replacement therapy after the hysterectomy). 
  • athena93317
    athena93317 marey

    Posted

    My first symptoms I recall was months after starting birth control note after having my son when even more hormones change it had gotten worse and I had to go overnights witch doesn't help your body starts to lack ask kids if vitamins I'm only 28 and recall symptoms about 9 years ago I didn't know what it was ask the time of course sense I have been taking vitamins and stopped birth control I have noticed a huge improvement I'm going back to days in two weeks so I hope that helps as well
  • mossy83
    mossy83 marey

    Posted

    Hi marey if u are still there,

    very new to all this. my LS popped up a few days after using, for the 1st time, lube and condoms with bf . On another discussion another lady mentioned hers was as a result of an allergic reaction to latex. I have no history of auto immune disease in myself or family.i eat relatively healthy exercise don't smoke drink. really strange for me I feel, for this to suddenly pop up.

    I'm wondering if anyone else out there in LS world was as a result of using condoms or lube? There's lots of chemicals in the lube that I can't imagine are that good for the area.

    It's been 5 months now and only had severe itching and burning for the 1 week when it first appeared, and ever since it's been whitish in colour and I also have very small rough bumps..they aren't white blisters like most ppl describe. it's not irritating me at all at the moment. It hasn't except for that 1st week when it showed up. It's just rough to touch and has never gone away since I got it.

    Does anyone's ever completely go away? Or is there always some physical signs of it when it's not in an active irritating mode.?

    The dermo has prescribed me diprosone steroid ointment (which I haven't noticed anyone on these chat sites talk about). I've also had a history of type 1 herpes in my genital area (once ) and heard steroid ointment can agrivate herpes if u have had it b4.

    I've caught it early the dermo said. I'm wondering for people who have had it for ages. Did u have these symptoms like mine for years and only seeked treatment when it got unbearable? I'm sorta hoping it will just go away by eliminating sugar gluten and drinking raspberry leaf tea (suggested on a Chinese med discussion) and not using the steroid ointment.

    or should I use the ointment and kick it in the but while it's still only minor minor?

    • sammiey
      sammiey mossy83

      Posted

      Very interesting theory that it could be latex. I've used condoms all of my sexually active life. I stopped post monopause. Yeh! But then again perhaps it was the chemicals in the lube you mention which triggered yours?

      What regime have you decided on?

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