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
LS_sufferer
Posted
Wow...Wen, Italy, lucky you...is there room for one more ?? (haha). Well hopefully a well earned rest might be the medicine you need, a proper tonic & without the Gin.
Yeh London would be fine for me, I'm only an hour away, South Wales is only 2 hours, & I have family in West Wales where I can stay, so I'm pretty central for either.
Lorna, how are you doing?? I feel a bit more positive again at the moment, I seem to be fine until my "Girly week" starts to rear it's ugly head & then I flare up like a hot air balloon, My little rough patch of skin on my left buttock = Aaaargh Itch city, but I know now NOT to scratch, even though some day's I feel like I could claw my self raw.
My hot flushes are also really starting to "kick in" lately, so I get really hot & bothered which also seems to make it worse. So you can imagine my sheer relief once the Girly week has come to an end, it really does ease up after that, so it sort of blows my under active thyroid theory out of the water & now i'm wondering if it really is just due to the menopause & possibly diet for me. I'm dreading tomorrow night, we are invited to a friends party, so it's going to be picnic type food & loads of booze. So I've decided to drive, that's number one off the hook & number 2, we are going to eat before we go, so hopefully that will work.
I'm also going to act my age this weekend & not go "gadding about" the Oxfordshire countryside on the back of a motorbike with the other half, so I can stick to a healthier diet & lot's of water instead, I'm also going to buy a bigger diary so that I can keep a better log of my diet, to keep a check when it's at it's worst, but so far it does seem to be girly week related
. Well Girls I've got to run for now, wishing you all a fabulous & itch free, sore free, tear free weekend, Take care Trace xxx
all_the_kings_horses
Posted
A very good weekend to you all. Well done, Trace with buying a bigger diary. I am always full of good intentions, but had the family over last night and we ate bbq food outside and, yes, just ONE glass of wine, but had almost a sleepless night as a result!
Take care, all,
Wen xx
LS_sufferer
Posted
Bridge_of_Sighs
Posted
I've had an appointment with the right specialist this time and she was SO NICE. What a difference to feel understood. She also gave me information on a set of dilators called Amielle Comfort and told me to get some. (the company is called Owen Mumford). When I rang them to buy (about £40), I was told that they are available on prescription but that not many doctors know that. I have an appointment tomorrow to ask for some so will let you know how I get on.
She also spotted that my vagina had narrowed, which my GP hadn't. My GP told me that sex was painful because of my psychological attitude to LS 'and I can sense this is a real problem for you isn't it? would you like some counselling?' (patronising smile). Am seeing different GP tomorrow so hope that all goes well.
Nice to be back. I'm in North Somerset.
all_the_kings_horses
Posted
Welcome back! Your GP sounds ghastly, so patronising. What a shame he/she has no idea about the agony sex causes, when you suffer with LS. Attitude, my foot!!! Hope the different GP is a lot more informed!
Somerset is such a lovely county to be living in, lucky you!
Take care xx
annieflipflop
Posted
I do so hope everyone has had a comfortable summer. Its certainly easier in lighter clothes, isnt it? Haven't posted for ages, and my problems have settled down a bit, but recently I tried cutting down my steroid to the tiniest amount possible every night. Now I have a terrible flare up, so am at a loss what to do. I have made an appointment to see my dermatologist who diagnosed me two years ago to see what she recommends.
I am hoping she can put me on Estradiol (vagifem) as I don't think my pessaries do much for the outside.
Your GP sounds horrendous - I had the same sort of thing when I asked my GP about chronic constipation which I now know is caused by thyroid problems, and he said "all old people get constipation" - a great help!
BTW I also live in North Somerset - it's a great place, but only if you've got a good LS specialist!
Annie
Bridge_of_Sighs
Posted
Is your dermatologist at St Michaels in Bristol? If not, try to get referred there, there is a specialist vulval dermatology dept. I can't remember the name of the person I saw, the main consultant is a man but I saw the woman who also runs the clinic and she was fantastic. She said it's really common in her clinic and knew exactly what she was talking about, all the physical and emotional stuff, and I didn't feel as if I was a 'case' but a real person. I'll rummage through some paperwork and see if I can find her name.
The doctor I saw today looked about 12 and admitted that she knew very little about LS but was happy to prescribe dilators so I should get them tomorrow, they're on order at the chemist. I also made sure that I told her how many of us were misdiagnosed for ages and she said she'll bear LS in mind now for anyone with recurrent itching or soreness. Hopefully someone somewhere won't have to go through what we all did now.
My son's home, gotta go
tigger123
Posted
Tigger123
all_the_kings_horses
Posted
I homed in on your "few and far between". Can you go for more than 4 days without a flare-up or without using steroid cream?
Just the idea of having anything, let alone metal, inside me wants to make me run a few miles!!
Horses
Bridge_of_Sighs
Posted
Smear tests - ouch! My doc told me that I was experiencing 'anticipatory pain' as I was expecting it to hurt, rather than 'real' pain. I did in fact tear as I found out when I got home. At least the 12 year old doctor was willing to listen rather than know it all. I'll ask for her in future. However she did prescribe me the Dermovate cream rather than the ointment which is supposed to stay on better. Does anyone else use the cream? I can't take it back as I didn't notice until I got home and don't want to have the cost of another prescription. I suppose if I use it last thing at night it won't come off. Any suggestions?
The dilators have arrived, all very discreet in a neat pouch which looks just like a make-up bag, albeit in a colour I wouldn't have chosen! They are plastic and easy to use, so hopefully I'll get on ok with them. There are printed instructions and a DVD, but as we haven't got any curtains yet I don't think I'll be treating the neighbours to the tutorial video...
Sighs
annieflipflop
Posted
The dilators sound terrible, but they say they do the job in the end. Luckily I haven't reached that stage yet and have very little fusing (as long as I keep using the steroid.
Yes, I use Trimovate cream, which is a mixture of antibiotic, anti-fungal and 'moderate'' steroid. You can't get it in ointment form tho. I've had no problem with the cream which you can massage in quite easily, especially after a bath or shower. Thank you for the recommendation vulvologist. I'll see how my dermo goes next Friday as she has been good so far, and although my GP has no idea about LS, she is very willing to refer me to whoever I want.
Your Emollin spray sound interesting Tigger. I'll look that up. I'm ready to try anything!
Annie
carol350
Posted
Even sorer I am glad to find this site will send for some of the grease but at the mo on steroid cream and
Antripiline ,
I have an under active thyroid for over 30 years but I have also developed Rosashia on my face the deamertoligist said its the auto immune not working as I also have ME and Fibro and feeling very low at the mo x sorry about the spelling x
carol350
Posted
But I think it's worth having and I also use children's bath non fragrance Balm any one else had this please ??
annieflipflop
Posted
I'm so sorry you are having such an awful time. But don't give up. Things will improve once you find a routine that suits you, I promise.
Interesting that you developed LS after a prolapse op. That's what happened to me too and I also have hypothyroid problems. I think it's the stress of the op that starts up the auto-immune problems. After I had a shoulder op last year the LS started up under the same arm and was worse than the operation.
Do you really have to have the biopsy? If the steroids work then that is some proof? It seems unnecessary to put you through another trauma.
LS_sufferer
Posted
I had a great week not just to it being our holiday, but symptom free....Hoorah, which added to our enjoyment to be able to get out & about in the fresh air & scenery
& to have a wonderful time.
OMG, sounds like some of you are suffering, which actually makes me feel alittle guilty for having a free week of it all. I think it helped because I was so relaxed without a care in the world. I have my appointment at the vulva clinic on the 23rd of this month & now i'm back in the real world rather than holiday land, i'm starting to get alittle anxious, I've booked the day off & the 24th, because i'm expecting it to be horrid & when you are sat for 12 hours at work, I don't think it's going to be a barrel of laughs for me on the Tuesday.
Well girl's, sorry I have to dash, up to my neck in it at work, hope to catch up again real soon, best wishes to you all, T xx