Hi. I am new to this site and looking for help. I was diagnosed with LS just a few months ago and have had it since April and I wouldn't wish this on my worst enemy. I am so discouraged. I have been reading a lot of discussions and most talk about managing pain but my main problem is unbearable itching. This can lead to pain if I scratch too much but otherwise I don't have the pain. I started out on the clob for 6 weeks, per Dr. then was supposed to switch to a week a month. Clob worked well for the 6 weeks but LS itching came back with a vengeance 5 days after stopping it. Tried using it again and it made everything worse. My dr has no other suggestions except clob but I am telling you it makes me itch so bad after one use now that it takes days to recover. I've had moderate relief with using tea tree oil and lavender oil and some various other things but the itching has flared up so bad at night I can't sleep. Just looking for some advice on the itching. This is such a depressing disease!! Thanks.
I sympathise with you completely. I've been there! Used to think my life was over sounds dramatic but honestly sleep depravation wore me down. I am living proof you will turn a corner. I itched unbearably for almost a year until the clob. I tried everything else but nothing worked. I still have flare ups but not as severe. I use it very sparingly and not as often as prescribed. Bathe and then use when dry. Persevere I hope you get there soon.
Why not take a good antihistimine for the itch? Sorry but I do not know what you mean by clob.
Clobetasol
Prescribed for Lichen Sclerosis.
I feel your pain it's an awful condition to endure. Try to get yourself referred to a dermatologist or gynaecologist who specialises in vulval health. They are much better than GPs who really don't have good knowledge of this condition. There are lots of things you can try to relieve the itch but beware of trying too many things at once a
and of course some things may not agree with your skin so it gets worse. Unfortunately most of us have found that it's all trial and error. I hope you get relief soon and good luck.
It is my GYN that prescribed the clobetasol and doesn't appear to understand when I explain how it makes my symptoms SO much worse now when I try to use it. I just tried it again last Monday and within an hour I had uncontrollable itching worse than any itching I've had without using it! It took two whole days for it to subside. The lavender oil works really well for daytime but nothing works at night. I also know there is a dietary component for me but haven't gotten that part figured out yet. Anyway, I will just have to keep reading and trying different things. Thanks for the encouragement.
I use emuaid alongside my steroid and feel it does almost as much as the steroid for itch relief. It's natural and can be purchased on Amazon. Expensive but last quite long.
Thanks for advice will try it!😊
Start with cutting out any big servings of sugar. Including large amounts of fruit. The diet component doesn't need to be complicated. I know it is for some, but take the low-hanging fruit first. Har. Har.
I used clobetasol for 18 months, then my gynae switched me to tacrolimus (Protopic is the brand name). It sort of burns, but I'd take that over itching.
Also, are you getting clob cream or ointment? The cream has extra ingredients that bother some people. My pharmacist sold me a renewal, changing it to ointment and just typed 'patient request' on it.
Hi Kimmiesue, so sorry to hear your plight. I haven't had itching issues with my LS. But I would suggest you try sitz baths with baking soda.. after, keep the area as dry as possible. I use cornstarch or talc with pwdr puff after applying the clob to keep dry. So many of the folks on this site use crisco. I haven't tried that yet. I also take "simply sleep" or benydrl about every other night and it does give me a good night's rest. I hope you find relief. You are right this is a horrible disease and doctors don't seem very interested in helping us.
This is what has helped me. Ask your doctor to prescribe Lidocaine ointment. Although it may sting some, it will numb the area and temporarily stop the itching. This will provide some relief. For immediate relief, use ice. It interrupts the itching cycle. For the placed where you have scratched, get hold of some diaper cream. I use Desitin 40% original strength. It has 40% zinc oxide in it and for some reason the zinc helps. This is a barrier cream and it keeps urine off of the area and starts to allow the areas to heal. The itching at times has driven me almost crazy. I am so sorry that yo
are experiencing this. Good luck and I hope these ideas will provide you with some relief. Some gynecologists are more knowledgable than others. My old gynecologist knew all about it. My new one knows very little about it. She is much younger. I will be changing to another one because I need an experienced gynecologist. My dermatologist knows a lot about it too.
Hi Kimmiesue
try cutting out dairy/sugar/gluten from your diet - takes 2-4 weeks to kick in but hopefully that will help you improve greatly. Also use bleach free loo paper/wash your undies and trousers etc in perfume free washing powder - dont use any fabric condition and wash through twice. Dont use soap on your nethers, just tepid water. I used the steriod initially and it worked then when it came back the steriod just seem to antagonise it, I cant use anything topically, it just irritates it more. Good luck xxx
"I also know there is a dietary component for me but haven't gotten that part figured out yet"
From your description, I would say you need to take drastic action immediately! Most women with LS do get relief from the creams you are being prescribed, however as it appears this isn't working for you, you need to analyse and review your diet.
Not everyone has to reconsider their diet, however unfortunately, many women most definitely do. You should start, by removing as much sugar from your diet as possible (remember we don't need extra sugar, as sugar is already in so many things that we eat anyway) and give this a try first.
This means no sweets, cakes, deserts etc and stick with it rigidly. Sugar is actually one of the worse things for Lichen Sclerosus, however if after a couple of weeks or so, you are not having any relief, then you should try another approach (but don't go back to consuming sugar again) like going Gluten free, again if there is no relief there than I would suggest then removing Dairy products from your diet.
When women such as yourself are in such pain and discomfort, as you have described in relation to your current condition, it always surprises me, that they will try many different things, however will not change their diet, which quite often, and actually more often than not, can either be the sole cause, or a major contributor to their flare- ups.
Hi, I know how you feel, I find if you can keep the area as dry as you can eg after urianating, bathing etc,a small dusting of talcum powder seems to help, and prevent the itching, hope this helps
That's great, glad you have found this to work for you, although I am not surprised, even after three days, because as I said, for some women, unfortunately, the key to regaining some modicum of comfort from their LS symptoms is to look closely at their diet, unfortunately, it is not a popular suggestion.....
I found the ointment worked for me when the cream did not. Clobetasol/Dermovate that is. I hope you can work out what works for you. Definately diet is a contributor. I also found aloe vera gel helped to calm the itch along with an anti-histamine. There are several types on the market so try various ones till you find one that works for you. Cetrizine hydrochloride, loretidine, and chlorohydride pheneramine. or something, anyway look at all the meds on the pharmacy shelf there are many different types which all work for different things. cetrizine hydrochloride is considered good for reduing inflamation and may be the one you should try first. There are many makers of this. hppf ;ivl/
Sorry don't know where the last letters came from x
I would have never thought of taking an antihistamine. I'll have to try that. I did get and take some Benadryl and took some last night along with doing a sitz bath before bed and I actually slept well for the first time in weeks! I am also cutting sugar out of my diet first as suggested by a few people on this site. We'll see what happens. Thanks for your suggestions!
So I was tested by my dr for gluten sensitivity and she found that I wasn't. Does that even matter???