Lichen Sclerosis and Thyroid problems
Posted , 33 users are following.
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
tigger123
Posted
Tigger123 (who also sympathises with you all)
Bridge_of_Sighs
Posted
My daughter was diagnosed with LS at 4 (via a very traumatic visit to the child abuse clinic because she bled. Thank goodness clinics exist, I'm not complaining, but it was stressful to go through) I think that was part of the problem. The Doc thought that I'd read about it and now I 'wanted it too.' As if!
I seem to be responding to steroids - I'm scared to write this in case I jinx myself, I'm so glad to feel there's something I can do at last. Looking back I'd had sore spots for years with hormone fluctuations. It's only really come on properly with menopause.
I'll look into the thyroid link, I fight tiredness all the time. I thought it was a natural result of having two very lively children, but maybe that isn't all the reason. Have to go carefully though, I'm a bit nervous of doctors shutting off and labelling you because you might have an opinion on what's wrong.
I'll look into all the brilliant ideas I've read here. It's so liberating to be able to talk about it at last.
Bridge of sighs (I join the sympathy givers)
annieflipflop
Posted
As well as having an under-active thyroid, I believe too many anti-biotics may cause problems with immunity too. At the same time as developing LS, I also started getting warts on my arms which are also a result of this.
Tiggy 123 - Did your daughter get LS at the age of 4 because of the stress? It must have been terrible for you both, but luckily children usually grow out of it. I find stress and drinking coffee definitely makes things worse.What was the spray lotion you were given Bridge of Sighs? Sounds good. By the way, I mentioned that I had a great result with Crisco, but I add a few drops of tea tree oil to the little handbag size pot I decant it to which keeps everything sweet and makes you feel deliciously cool too (not too much of course!)
Now that Spring is finally here, I can't wait to get into lighter clothes, can you?
Annieflipflop
Bridge_of_Sighs
Posted
Having discovered this forum I've started looking round others (it feels as if I've broken a barrier by being able to admit it's happening to me, and realising that I'm not alone). Everywhere there's a collection of women there seems to be an LS discussion going on somewhere.
Hmm... clothes. Having spent most of my adult life wedded to jeans, for the last 4 or 5 years I've just found them too painful and had to reinvent my wardrobe. I was really down for quite a while, for lots of reasons, and just hid in baggy tracksuits, but last year I reinvented myself sartorially and its been great fun working out who I am in the clothes department (mostly from charity shops). I find that as long as I wear cotton underwear I'm fine with leggings and a skirt or dress over. That stops any rubbing without me having to get my legs out and all the pfaff that involves. As I have a big dog who needs a lot of excercise, the cold weather was a challenge, but the very warmest thing is a long skirt and leggings. With a warm pair of boots I was snugger and more comfortable then I ever was in jeans. I wear a short skirt in the rain because you dry out quicker. Result! comfort, economy and better dressed than I ever was pre-LS!
So there are things to be positive about, even small ones.
Bridge of Sighs
curlytop
Posted
Will speak to you all after I've been.
Bridge_of_Sighs
Posted
all_the_kings_horses
Posted
curlytop
Posted
DLB129
Posted
Thank you all - this site is so helpful as I'm pretty devastated at the moment. xx
louise70542 DLB129
Posted
LS_sufferer
Posted
DLB129....I find your comments about thyroid problems very interesting, it has certainly now prompted me to go back to my Doctor for a blood test. ( I have an appointment booked for next week) My reasons for this is, even in this hot weather (which I love) my feet are as cold as ice, my hairdresser is concerned about my volume of hair loss over the last year, & has kept nagging me to see the Doctor about it. (She's been my hairdresser for 10 years). I have trouble swallowing food & drink's....I have to gulp them down, very uncomfortable. I constantly feel tired, I do work long hours because of my job & have to get up at 5.00 a.m., but if I don't have a nap thru' the day, I would literally just fall asleep when I'm stopped. I constantly have a feeling of a lump stuck in my throat, I suffer with anxiety which I take medication for. So basically I think I'm showing quite a few of the classic symptoms of a thyroid condition.
So I'm hoping that with a blood test etc, it may throw a different light on to things. So I will keep you posted how things go next week. T xx
all_the_kings_horses
Posted
I wondered too if I had a problem with thyroid and had it checked out, but all is well thank goodness. I have enough to cope with at the moment. My hair is falling out though. Can it be the change in weather, or does that sound crazy? Sorry you are so tired, rest as much as you can and know that we are all thinking of you.
Horses
tigger123
Posted
all_the_kings_horses
Posted
Just read your message and agree that Canestan doesn't help LS, in fact in my case it just made things worse, but once I found out I had LS I stopped treating so-called thrush, which by then was very fierce indeed. You are so lucky only to have a flare up once; I get them very frequently and have to rely on dermovate to calm things down Can I ask how long you have had LS? I haven't heard of Oilatum gel, but use the Oilatum shampoo and Oilatum soap for washing my face!
Horses
tigger123
Posted
thank you for responding re the Canestan. I've had LS diagnosed for 2yrs but suffered for about three years prior to this. My consultant prescribed the Oilatum Gel amongst the other things. It did become hard for my chemist to get for a while earlier this year (out of stock at manufacturer for 3 months) and he gave me an alternative soap free lotion (QV?...something or other with just letters for a name) and my skin felt like it was on fire...I washed it off very quickly !! Thankfully I had two spare tubes of Oilatum Gel stashed away. Anyway, my consultant and I now have my LS very much under control but I know that when I didn't follow everything on the advice sheet the Vulval Dermatologist gave me and became lakadaisical about using all the lotions and potions..that's when I had a flare up. I have to use something which resembles vaseline after every visit to the toilet. I did find that after a few days I got a bit sore so I now do it on alternate days. I don't bother if I'm out and about but whilst at home I do use it and I really think this helps keep flare ups at bay together with the Oilatum Gel for washing 'down there' !.
tigger123