Does it get worse before it gets better??
Posted , 8 users are following.
Hi everyone, first of all I am so so glad I have found this forum as I am struggling to find information about LS form people who actually suffer with it too. I am a newbie so bear with me I know I need to do a lot of reading but I am after some advice
I was diagnosed with a biopsy a couple of weeks ago and started treatment a week ago. I have been given Dermovate ointment to use everyday for a month, then every other day for a month and then twice a week for a month before being reviewed.
I am still waiting for my first nhs gynaecology appointment, it’s in February 2019 haha! I think they hope my whole vagina will just drop off by then
So after months of being treated for thrush even though every swab for everything possible came back negative and no GP even examining me!! I finally researched a private consultant dermatologist who specialises in vulval dermatology and that’s how I was diagnosed...pricey but worth it to get some answers!
Anyway here are my questions. I appear to be getting worse symptoms since using the steroid cream. It makes me red and sore. Is this normal? Should I bear with it? Or is this just an unrelated flare up? My flare up symptoms are soreness, itching, inflammation in vulval area and a cut in bum crack that is sore when going to the toilet for a number 2. It burns when I wee. These symptoms get worse when I am on my period and if I am stressed.
I haven’t adapted my diet yet, I go to slimming world already as I need to loose weight but cutting out sugar AND sex now that’s just a step too far right?? I spose I can’t drink wine either? FML
The dermatologist also gave me an emollient to wash and moisturise with which I have been using, I think it’s called cetraben, this also does not feel nice when I apply it, maybe it’s this that’s causing an issue?
My next question is I have already had some changes to my anatomy, can this be stopped?? I am only 31, we have 2 small children and I am hoping to still have another
To be honest I was kind of hoping this steroid ointment would fix it and it doesn’t seem to be that easy and I guess I’m finding it hard to come to terms with that.
Last question for now what do you do ladies when you are on your period? I have tried organic cotton tampons and sanitary towels and it’s just all painful
All advice and comments welcome
Thank you!
0 likes, 49 replies
sarb73328 emmy2018
Posted
Hi emmy
I agree with all the replies on here. Pea sized amount of steroid. And are you using potions to moisturize with in between as I think that's vital too? Emuaid is very good, coconut oil , castor oil mixed with turmeric oil have been good for me. I believe a little of my fusing became unfused with steroid application, so there is hope there. Persevere!
My GP prescribed epaderm emollient to wash with which I find soothing, not sure if it's the same as cetraben. And borax solution to swab with is also soothing.
You will eventually find what suits you I am sure. Good luck.
emmy2018 sarb73328
Posted
hi
the dermatologist gave me cetraben to wash and moisturise with its an emolient, currently its the opposite to soothing but i think i'm sore from putting too much steroid on so i wont judge it yet until the area has calmed down a bit
so do you moisturise throughout the day too? how often? i keep seeing this emuaid mentioned i need to look in yo that
thank you for your reply x
sarb73328 emmy2018
Posted
Emmy, Sounds a good idea to wait until it's calmed before you use cetraben then. Yes, I moisturise through the day, re-apply whenever I feel dry, carry emuaid with me. I find this is imperative to keep irritation and soreness at bay. I am post-menopausal though so it may be different for you.
beverly52803 sarb73328
Posted
hi sarb, I think some women have said even emuaid feels harsh. Maybe it's the tea tree oil in it? I tried restore which had tea tree oil and I could not tolerate it, despite the fact that I have no open sores. Too bad it isn't possible to obtain samples of these remedies.
emmy2018 sarb73328
Posted
yeah i am 31 and still ovulating so i am getting normal hormonal discharge and im pretty wet most of the time but i find that can irritate it even! so i cant imagine putting more moisturiser on there but i spose i need to trial and error
sarb73328 beverly52803
Posted
Beverly - agree that tea tree oil is strong so have to be careful trying emuaid. Also I became tolerant of it after a couple of months use and had to go on to something else. I am back using it now alternating here and there with other potions.
Ye it would be good to be able to try samples especially of products like emuaid which is so expensive.
Su02 emmy2018
Posted
Hi Emmy
Yes i agree too with all the replies. Im 3months in of steroid treatment. I found too that periods tend to flare it. So i lay off the steroid a couple of days and use sudercream on sore chaffed bits until healed. I find castor oil soothes and sitz baths. It is trial and error definately! Rgards to periods maybe discuss with your GP i have recently gone on mini pill to reduce the flow or possibly stop as i can no longer use tampons far to painful.
emmy2018 Su02
Posted
oh mine is so bad during periods, i have actually been in the mini pill before and it completely stopped my periods so that is definitely an option thank you!
i was planning to have another baby in the next couple of years though, i probably need to find out if LS would affect that i dunno if you can use steroid if you are pregnant and i dont fancy pushing a baby out of there during a flare up
can i just say Lichen Sclerosus SUCKS!!
sarb73328 emmy2018
Posted
LS sucks. I second that for sure!
beverly52803 Su02
Posted
Dos the doctor say it is hormone fluctuations during a period or a reaction to blood at the vulva that exacerbates the problem? Or do they not offer any theories?
emmy2018 beverly52803
Posted
they dont offer any theories! although i have read that other women are irritated around ovulation and when they are bleeding so it does seem like there is a link to hormones and also just discharge coming in to contact with the vulva in general