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
Tigger 123
all_the_kings_horses
Posted
I suppose some of the really strong-willed ladies just eat fish, perhaps a little meat, vegetables and fruit, oh and water!! I am way off line but at least I don't eat much bread, although I like biscuits! I am a hopeless case I am afraid! Don't worry, Annie, I won't give up though; it is becoming a way of life now.
Hi Tigger,
Presumably nail varnish on toes is allowed? Hope so! I can understand white knickers and white towels, as there is so much dye, which we take for granted.
Keep cool all readers!
LS_sufferer
Posted
Just having 10 minutes to catch up on your post's....I'm so shocked at how badly most of you are suffering, I really do seem so lucky (If there is such a thing to be lucky with LS) Maybe i'm still in the fairly early stages of it.
I was suffering with the chronic itching & horrendous scarring around the anal area & the odd tear & split, but it seems mine is nothing compared to what you girl's are going through.
I do try to watch what I eat & drink, but there are some things I just CAN'T live without, I just have to have 1 cup of coffee to start the day, I have found a massive improvement now that I have cut out bread, but it really is a mind field of knowing what to try & what to leave out.
I know for me it's early day's, but I find it hard that we are all left to get on with it really. If it wasn't for this site I truly believe I would have completely "lost the plot" it's amazing that their really are such still good people in the world still willing to help others, I wouldn't have had a clue what to try or where to start, It's because of lovely ladies like each & every one of you that I feel I am coping & managing my LS & that each day is a little more bearable. Thank you everyone for even the smallest of comments, it really has made a difference for me, please keep up the good work, Tracey
xxx
Bridge_of_Sighs
Posted
I also seem to be getting off lightly, although i have damage from previously, I rarely itch. One of my kids has had a long term wheat intolerance so we are very wheat 'lite' in this house and I wonder if that's helped.
wheat free tips; the breads you buy in the free from sections aren't very nice, we all go for sourdoughs and overnight whites from small bakers which are much easier to digest. Basically wheat has something in which makes it hard for the body to process, but the long fermentation types cause a chemical change which makes it gentler on the body, and taste good too.
There is a brand of pasta called Salute, you can get it in waitrose. It is the closest mainstream one we have found to normal pasta. Healthfood shops have quite a variety, we discovered that ones made of rice are much nicer than the corn ones. I can't remember what the Salute one is, but it tastes ok. (beigy yellow packet with swirly blue writing.
Read ingredients, you'd be amazed at what's got wheat in, but there's always an alternative, sometimes it's just a matter of changing brand. For cakes and biscuits Nairns (oaty - not very sweet) or Mrs Crimbles (coconutty and very sweet) are good, so is Dutch apple Cake (rye flour, a long rectangle of a cake), and lots of places now have gluten free options. Brownies are often gluten free in lots of mainstream places, and Pizza Express is doing a gluten free base. (I know gluten's not the problem, but it's a good indicator - very rarely you get de-glutinated wheat, but it's usually in the prescription stuff and unless you're really sensitive it shouldn't matter)
Use Granola (oats) rather than muesli (wheat) and obviously porridge and cornflakes are fine.
There's a lot of spelt flour around now. I use white spelt for general baking and it makes lovely pastry. I add gluten free baking powder to make self raising flour and no one notices the difference. (or bicarb and lemon juice when I run out - always a bit experimental but usually works). Normal baking powder has wheat in but the other one is available in most big supermarkets either in the baking section or the speciality section (Dr Oetker red lid). Or in health food shops. Individual items are more expensive, but overall we save because we don't buy pre-prepared food so our shopping bill is about half of most of our friends.
If you supermarket shop there's usually an aisle where all the allergy speciality food is kept in one place. Health food shops will obviously have a wide range.
Sausages and burgers have wheat in, but lots of wheat/gluten free brands now in supermarkets and local butchers. We like The Black Farmer range, and the ones our local butcher makes.
If you just change a few key ingredients (pasta, flour, cereal, bread) it should help. I appreciate that we've been doing it a while so are in the habit, I hope this helps anyone just starting. I found that once I started reading the ingredients I didn't want to eat it anyway! Bread shouldn't have a paragraph of ingredients, just flour, water, salt and yeast - what's all the other stuff doing to it? and us?
There's much more awareness then there used to be, and much more choice than when we started 8 years ago.
Good Luck!
ps. My child said once 'everyone at school's sorry for me because I can't eat wheat but actually my food's much nicer than theirs.'
all_the_kings_horses
Posted
I agree with all that you have said. I felt so full of panic and desperately needed someone to talk to. I found this site and have never looked back. I originally felt I was the only person who had LS and LP front and back and that life would never be the same again. I was quickly reassured and have learned now to cope with this disease and go on with living as normally as possible. Going away on holiday is always a bit nerve-racking and I have to double, sometimes triple-check that I have packed all the necessary creams and ointments, etc. I always miss my Japanese loo when I am away, as it makes washing so easy and I no longer have to worry about wiping, which used to be so painful. I am off for 10 days but, thank goodness, there will be a bidet. I keep my i-pad with me, so hopefully I can still keep in touch with you all.
Someone suggested zinc tablets for fissures and tears and I am taking them regularly.
So glad you have joined this site.
W
tigger123
Posted
all_the_kings_horses
Posted
If your Vulval Dermatologist knows about any foods that aggravate LS or LP, please let us know. I once asked my dermatologist, but I seemed to end up telling her. Probably the best people to answer this question are those who have had the disease for many years and have learned by trial and error. For me, definitely bread, potatoes, oranges and wine!! I haven't been able to eliminate the last item from my diet, but I mainly drink for social and family events. You always feel such a killjoy turning down a cool glass of wine at a party! That's my excuse and I am sticking to it!
tigger123
Posted
all_the_kings_horses
Posted
I am convinced that acid in the urine can start a flare-up. I don't eat oranges any more, because of this, but at weekends may have a glass of wine or two. I am also borderline diabetes so perhaps you are on to something.
Take care,
Horses
tigger123
Posted
ummm well it's even more worth mentioning to my consultant in Feb. Anyone else had their blood sugars done and are diabetic or borderline and have to be careful ?
tigger
annieflipflop
Posted
Yes - I am hypothyroid and borderline diabetic too and am trying to be careful. I have resolved to get myself as good as possible (which I have by reducing the steroid very slowly and giving up wheat, sugar, wine, oranges, most dairy) and then every now and then trying some of these foods one at a time to see if they affect the LS. I have done this with one coffee - really enjoyed that! Unfortunately I had some itch problems in the evening, so that's out. Maybe next week I shall try one glass of wine.
Isn't Life complicated?
Annie
all_the_kings_horses
Posted
Yes, life is complicated and I don't think I could bear to give up my morning coffee, although it is decaf, but this probably doesn't make any difference. Good luck with your wine; next time I have a glass I will secretly toast to all the ladies in this forum!! By the way, chocolate is definitely OUT!! Last time I ate some glorious Lindt chocolate I was woken up in the night with the most unbearable itch! It just wasn't worth it!
Good luck and have fun in the sunshine!
Horses
all_the_kings_horses
Posted
Yes, life is complicated and I don't think I could bear to give up my morning coffee, although it is decaf, but this probably doesn't make any difference. Good luck with your wine; next time I have a glass I will secretly toast to all the ladies in this forum!! By the way, chocolate is definitely OUT!! Last time I ate some glorious Lindt chocolate I was woken up in the night with the most unbearable itch! It just wasn't worth it!
Good luck and have fun in the sunshine!
Horses
Bridge_of_Sighs
Posted
I had negative tests for underactive thyroid and Coeliac disease, so that link is not there for me, but I do have latent psoriasis which rarely flares up except under extreme stress.
My LS trigger was the hormone changes during menopause I think. That one seems to be quite common too.
As for wine; I love a nice glass but have recently started getting full on hangovers after just one glass, so unfair!
Sighs
LS_sufferer
Posted
Hope everyone is coping & looking forward to the weekend, Well I went to my Doctor on Wednesday to discuss possible Under-active thyroid problems
. Well I feel like I've just wasted the NHS money, It wasn't my usual Doctor.
I found her to be completely un-helpful
& that I'd wasted her time. She completely dis-missed all the symptoms that I explained to her, & refused for me to have a blood test done, So I did have to explain that I felt it was my right to have one, A..as a tax payer (which I pay an awful lot of) & B..for my health & peace of mind....she didn't seem overly impressed by me.
But how-ever, she did back down & said....Well maybe it's an idea to get it checked just in case, so I have to wait another couple of weeks to have an appointment with the nurse for said blood test, but it's left me feeling quite deflated. I truly hope I am wrong, but I just want to be able to lay things to rest, & to try & help myself as much as possible.
I realise that my LS will never go away, & have accepted that, but have to say the Doctor made me so cross I did get home & have 2 very LARGE glasses of wine & felt totally rotten the next day
well that will teach me a lesson won't it.
So feeling a bit low today...sorry to "stress dump" on you all, but I've got the weekend to look forward too & a big fat raspberry to the Doctor that I saw (hahaha).
Have a great weekend girl's, enjoy, best wishes Tracey xx