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Lichen Sclerosis and Thyroid problems

Posted , 33 users are following.

annieflipflop
annieflipflop

Hi everyone,

I've been reading all the posts with much interest and what a relief it is to find that I am not alone!

I am 70 and have had LS for 18 months now, having been diagnosed by a skin specialist. But it took a good 12 months to get there after I kept being diagnosed with urine infections because my samples were "cloudy". After numerous courses of anti-biotics which of course were useless and numerous hospital scans which turned up nothing except a benign ovarian cyst, my urologist noticed my inflamed vulva and suggested I see a dermatologist, who immediately diagnosed LS which I had never heard of. She prescribed a steroid cream which worked very well and seemed to keep the itching in check. She also asked if I had ever had thyroid problems and I said that I had suffered from an under-active thyroid for ten years. Apparently it is quite common in LS cases.

A year ago I had to have a shoulder operation and had to have my arm strapped tightly across my body for 24 hours. Although it was painful, it was nothing compared to the LS which immediately flared up under my arm where I couldn't get to it! It was agony. I suppose it was the stress that caused it and I do notice now that if I am ever stressed the LS does get worse, although it seems to confine itself for the most part to my nether regions.

I have reached a stage now where I need to use my steroid cream two or three times a week and worry that I am using it too much. I tried emu oil without much success, but I read on another forum somewhere that people had some joy with "Crisco" which, believe it or not, is an artificial butter substitute used extensively in the US for baking. I sent for some from Amazon which came in a few days and it has been a great success. I think it acts as a barrier cream protecting from the acidity of urine. I still need to use the steroid cream every few days but it's so much more comfortable in between. The beauty of it is that you don't need to refrigerate it.

Anyway, I digress......I really wanted to know whether there are many people out there with LS who have an underactive thyroid? I heard that at the age of 67, your body starts getting all these annoying little things wrong with it. And it all adds up to one big PAIN!

Annieflipflop (who sympathises with you all)

2 likes, 105 replies

105 Replies

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  • all_the_kings_horses
    all_the_kings_horses

    Posted

    I have made a note of Dr Francesco Casabona's name and will google him, etc. and see if I can get this treatment. Was it painful? You say that "it can almost reverse the condition". Do you still have some symptoms? Even so, I think it would be worth it to have a sex life restored!!

    God bless you!

    Horses

  • DLB129
    DLB129

    Posted

    Ladies - sorry for my absence. For some reason today I feel so incredibly down abut this condition - the enormity of there being no real cure sometimes hits me afresh and I feel full of despair. I hope everyone is coping better and you are all getting some respite.

    xx

  • all_the_kings_horses
    all_the_kings_horses

    Posted

    Hi DLB,

    Don't despair! I am sure we all have days when the reality of the condition makes us feel positively desperate, but there are good days too. I seem to be going through another bad patch as well and cannot seem to get rid of the LS, in spite of washing every few minutes and using the necessary creams and lotions. I am sleeping badly as a result and constantly feeling guilty that I have given up sex, as just the idea of it now is like torture. Sorry, this was supposed to be helping you...... You are not alone, if that is any comfort.

    xx

  • all_the_kings_horses
    all_the_kings_horses

    Posted

    I chickened out, the last time I looked up all Francesco Casabona's details. I had a hysterectomy when I was in my early thirties, so two children later and another operation down there for a rectal prolapse, everything went to pieces. I am anxious that another procedure would be the last straw, but I shall try to be more optimistic. It would certainly change my life around if I didn't have to always be worrying about how to wash, when travelling. You never realise how lucky you are, until you get this disease. Thank you again!
  • elisabeth59608
    elisabeth59608

    Posted

    So grateful to have found this forum. I was diagnosed with LS about five years ago and given NO information other than that I shouldn't scratch. I have a prescription for clobetasol propionate cream to be used as need-

    ed. (I'm in the U.S.)

    The pain with sex is the worst part for me. I'm pre-menopausal and it feels like I'm ALWAYS bleeding for one

    reason or another...I will re-read the posts to see if anyone has had any suggestions but this is impacting my

    marriage and making me miserable! Any help appreciated!

  • elisabeth59608
    elisabeth59608

    Posted

    Hi, me again. I've now read all the posts and will research dilators (does anyone else feel ashamed about how you LOOK down there?) With the scarring, perineal splitting and everything, I just want to have sex in the dark.

    I have had one big stroke of luck which was to discover men's nylon mesh boxer briefs (I guess they're "knickers" on your side of the pond!) The nylon mesh dries almost instantly, unlike cotton which holds moisture against the skin. They let more air through, too, and the longer leg keeps them from riding up and rubbing. (Again, don't know if "wedgie" is a UK term, but describes the uncomfortable wad so well...)

    Here's to a blissfully comfortable, itch- and pain-free day for all of us.

  • wornout
    wornout

    Posted

    Hello everyone, I am a newbie to this forum and so wish I had found it earlier. I have had LS for nearly 20 years now although it was only diagnosed 7 years ago after years of being told it was thrush & have some more caneston & get on with it. After thinking I was going mad & being raw constantly for years I had an appointment for usual smear test but did I mind if the locum Dr did it as my Dr was off sick so having no dignity left anyway agreed. Well that would be the best decision, she was ready to carry out the smear when she said omg how long have you had LS & what specialist was I under as there was nothing on my notes. When I told her that it was thrush she said that there was no way that it could be anything but LS. So finally got treatment & after 2 years of getting cream routine right thankfully thing were under control.

    There is however, no I have found you all, if I can ask if any of you have found it spread further round is to the back of the perineum & back passage, I have found I am getting symptoms of LS there & I feel back to square one being constantly sore, itchy & being driven mad. I am at my wits end, Dr says it cannot be LS & just use vasaline or such like. I have to say that I have tried most cream, even my betnovate, but have noticed many of you different creams. I don't use anything with soap & wash in Dermol.

    This forum is great, it is only other people that suffer with LS who understand. I also have an under active thyroid which was diagnosed 14 years ago.

    Wornout

    • pat48434
      pat48434 wornout

      Posted

      I HAD LS for about three five years.  Also had thryroid prblems about the same time.  I'm 79 so I just thought that was old age.  I don't know what to tell yau about the thryoid but have been so happy after a visit with my Gyno yesterday, as I had expected, I had pretty much rid myself of the LS. 

      I read, about 7 or 8 months ago a message on this blog about a wonderful woman, think her name was allison,  who shared her treatment.  Being desperate betwoon earing pads for constant leaking from UTI"s and making things increasingly irritated I tried it.  I used Clob for about a month 2 times a week for a short period of time, maybe 1 month or so.  Not helping.  Then I tried the treatment I had read about on this blog.

      Borax, the kind in with all the cleaning supplies, wash clothes etc.  I purchased a small spray bottle and put hot water in about 1/3 of the way and added the borax powder then SHOOK then added enough water to fill the bottle.  No clumps so I was very careful to break

    • pat48434
      pat48434

      Posted

      lumps of the Borax.  I used the tip of a teaspoon 3 times for a measurement.  I sprayed each time I went into the bathroom and used a healing product like vasoline each time also.  I used a very gental healing soap that comes in the same area in a drugstore as the healing cream.  VOILA, the Gyno said I had rid myself of LS.  Everything lookd healthy and unfused.  I also use a natural toilet tissue found in the natural food store, no bleach.  I don't use bleach in my wash anymore even for white clothing.  I know this may work in a different way for someone but for me my prayers have been answered.  Hpefully it will help others as well.

  • all_the_kings_horses
    all_the_kings_horses

    Posted

    Hi Wornout,

    You have all my sympathy! I cannot imagine what it has been like for you all these years, not knowing that you had LS and thinking you were going crazy. I only had this for about a year (being treated uselessly for thrush, which made things worse) and I am pleased for you that at last you know where you are. Welcome to this lovely forum, which has been such a help to us all.

    I have LS back and front and use dermovate, when it starts getting itchy. I use acqueous cream for washing or a shower gel called Simple. I use a cream that my dermatologist recommended called Zeroguent after every visit to the loo, having washed and rinsed carefully first. The key is to keep pristine clean and well moisturised.

    Please keep in touch and let us know how you are doing.

    Very best wishes xxx

  • pat48434
    pat48434

    Posted

    Hi Everyone,

    I have had LS for about a year. Then about the same time found out that I had Low thyroid. Been upped on meds thyroid 2 times. I also have trouble swallowing frequently. The biggest problem is, if I don't choke to death first is constant bladder infections, on Cipro for the fourth time. Doctor put me on an antibiotic for 2 months but after 3 days had a severe bladder infection again, back on Cipro again. Anyone have a problem with any of the freeky problems?

    76 in the US

    • RosieView
      RosieView pat48434

      Posted

      The swallowing thing rings a bell.  I didn't know that was connected with LS.  I also have low thyroid.  I've noticed that I choke on things waaaay more often than I used to.  But I have a complicating factor.  I was born with Chiari One malformation, had decompression surgery 25 years ago, and now that part of my neck is showing degenerative changes. 

  • pat48434
    pat48434

    Posted

    Hi Everyone,

    I have had LS for about a year. Then about the same time found out that I had Low thyroid. Been upped on meds thyroid 2 times. I also have trouble swallowing frequently. The biggest problem is, if I don't choke to death first is constant bladder infections, on Cipro for the fourth time. Doctor put me on an antibiotic for 2 months but after 3 days had a severe bladder infection again, back on Cipro again. Anyone have a problem with any of the freeky problems?

    76 in the US

  • marieC
    marieC annieflipflop

    Posted

    Hi everyone, I have hypothyroidism and LS.  The hypothyroidism was diagnosed when I was in my 40s and LS when I was about 55.  I had no idea that there was any connection.  I went to a female GP as Canestan was repeatedly given to me and it didn’t help at all.  I had phoned the genito-urinary clinic and asked what it might be and a nurse said it could be LS.  The female GP ignored my suggestion that it could be LS and gave me more Canestan.  After that I put up with it for about a year until it became so sore that I couldn’t ignore it any longer.

    Then I saw a male GP who referred me to the genito-urinary clinic, where it was finally diagnosed.  I had it photographed by a male photographer, I don’t know who was most embarrassed, him or me as it was vulval and anal.  I read that it should be reviewed every year, but I haven’t had an annual review yet and I’m now 65.  How many people like me are left to just get on with it?

    I’ve tried emu oil and it does help a little, but I do worry about using steroid cream, so probably don’t use it as much as I should.  I may try “Crisco” and see if that is any better.  It seems that not many of the medical profession realise how painful it can be and I’ve had bladder examinations where it has felt as though I have been very roughly treated although I have explained that I have LS and the skin is very delicate and sore.

    I hope that doctors show more concern for this condition and about a year ago I read that there was some promising new treatments abroad which were giving a lot of relief, but not here.Good luck to everyone on here and let’s hope for more enlightenment for us and them!

    • Octopus_1289
      Octopus_1289 marieC

      Posted

      Marie,

      I sure know what you mean by your comments on the rough examinations. I too have LS. I had a whole 6 months of it in the anal and vaginal area. No one knew what it was. I was convinced that I had some kind of anoal cancer which spread to the vaginal area. I was treated for about 5 years off and on with Canestan, hydro-cortisone creams and whatever. I ended up getting a phamacist to make up a cream for the anus. It worked thanks to a very caring doctor. Next I got LS all over my abdomen, now it's thighs, arms underarms, chest, breasts and everwhere else in between. It is horrible. I just commented to annieflipflop, so maybe you can see my posting. I forgot to tell her that I went to a lab and received hundreds of ultravoilet rays which cleared uo the itch. That is not a solution though for the genital area. Hope you are doing better. Sammy

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