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!
use very very small amounts of steroid. less is more or you will hurt the area.. i use like a half of pea size. over did it at first and got worse... stayed light and it was lovley.
oh gosh thank you so much for your reply! i am using a lot more than that, i am using about an inch of ointment squeezed out on to my finger. but its hard to know where to put it exactly, only on white patches? on areas that itch? the whole clitoral area itches and is changing aswell the labia so this is quite an extensive area
emmy, a little bit of steroidal ointment goes a long way. How could someone who specializes in vulval dermatology not see fit to tell you how and where to apply a steroid? You are not the first women to report a doctor giving insufficient advice on how to use a potent medication and it's very distressing to hear. I have used approximately 1/4 of a 30 gram tube in 6 months. My gyn was responsible enough to actually draw a diagram of where to apply it and clearly explained that I was to use a very small amount. Anyone with common sense, let alone a medical professional should understand it's a rather awkward area to see on one's own body. I used a little too much on one occasion after diarrhea caused some splitting and I immediately had a bad reaction. Skin became inflamed and very sore. I held off using the ointment for over a week as my gyn was away. She then had me use it just twice a week after that for about 2 months. I was advised today by the nurse to use it 5 nights a week (between the 2 nights using estradiol for atrophy). If I were you I would call the doctor I PAID, have him refer to his records and have him tell you precisely where it should be applied. He could even draw a diagram for you as mine did for me. In the meantime I think you might want to give your skin a rest, but to be safe when you call that doctor you PAID ask for his advice. Wishing you the best. I have had quite good results from using Triamcinolone which is a mid strength steroid.
Hi emmy, as mentioned, a tiny bit of steroid cream is all that you need, although it sounds like you might need to give it a miss for a couple of days to give yourself time to recover from using too much. When you apply it use a hand mirror and gently rub it into the areas that feel itchy. Also, the other cream that you have been given (cetraben) might not agree with you and so you could put that to one side for now and try it again at a later date when your Vjay is feeling better.
The cut you refer to in the crack of your butt is a common symptom of LS and I personally found the steroid cream too strong for cuts and so I used Desitin baby cream, or any baby bottom cream, again, only use a tiny bit. This seems to work well for cuts.
oh my god no wonder i am sore i have used 1/4 of the 30g tube in a week!!
the consultant did tell me to use it sparingly and only put a thin layer on but i thought i was by only using a fingertip full. she also told me to put it wherever it hurt and on the white bits, it bloody hurts everywhere though!
i have applied a really small amount tonight so i will see how i go but it must be because i was putting too much on as its now red and inflamed
i think also the knowledge that i already have some fusing is scary so i want to make sure i am covering all the right areas to try and stop it!
thank you for your advice
thank you for your reply , there really sounds like a lot of trial and error with treatment!
i will try some baby bottom cream on crack and give the vag a rest for a couple days before i start with a teeny weeny bit of steroid again
yes i got folliculitis from over use..i used a antbiotic ointment for 4 days and the area healed..went on with the tiniest dose of steroid. take a few days and just sit bath just water once a day stay dry
Emmy, I have read the replies and agree with everyone. I would like to mention that in between using that pea size ointment on the white areas, that you can use common olive oil to moisturize and it will help heal that backside fissure. as far as the fusing goes, I put that steroid (mine is Clobetisol) on only the white areas as that is the fusing lines. Once your labia fuses it will not infuse. so heading it off as much as you can is my advice. Wine is my only diet vice I have and damned if it doesn't flare me up; but then, so does crying or getting angry or having bouts of high anxiety.... so I don't know the answer to that one. good luck to you!
oh really, see thats where i find it hard to know where to apply the steroid, all the white patches are below the clitoris area above the vaginal opening so its easy for me to put steroid there. but i basically have no labia minora left at all they have just disappeared and the labia majora has shrunk, the clitoris is being buried by the hood so that is worrying me so i have been putting steroid allllll over those areas, even if its a thin layer that still an extensive area, i probably should call the consultant but i reckon you ladies know more!
this whole thing first started when i was dealing with a period of extreme anxiety but i dont really know how to keep stress free i have a high pressure job and two toddlers...even just talking about it makes me need wine lol
you're putting it where it should be applied then. isnt it a shame that our architecture gets so atrophied before we realize this is more than an itch, this is really something that should be investigated. I have same closed up clitoral hood and if you look up clitoral hood phimosis there is a whole education out there regarding it. and there IS a surgical correction for that.
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.
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.
i put it every where. very small amount. start at the top and work it down was my drs order. works!
yeah Julia you are right its crazy that our anatomy can change so much without even me noticing let alone any medical professionals! i can safely say i never looked down there before all this kicked off ever! now i use a mirror to look down there every couple of days so i am noticing changes. but i suspect i have had this for longer than i realise, as a child i had chronic issues with vulval pain and soreness passing urine and i would refuse to wear jeans or anything tight down there, it started when i was around 4 years old and would come and go, disappearing at puberty. the GP said it was food intolerances?!
anyway since giving birth a couple years ago i have had issues with recurring thrush, it was probably this all along and was possibly triggered again by tearing and having stitches to repair after childbirth so i have probably had it untreated for a while
why do gp's focus on thrush so much as a diagnosis i mean yes initially its probably a good bet but after thrush treatment hasnt worked for months why did none of them (i saw at least 5!) think it might be investigating this, is LS really that rare?
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
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!!
I remember several years ago I got where when I peed it always seemed aimed at my left thigh. I thought I must really be putting on some flabbiness because how odd that it just began and didn't stop. I look back now and realize that was also the time I was losing interest in sex and my clitoris ached all the time. who knew it was the beginnings of my fusing :(
oh gosh do you have issues with passing urine now? i dont blame you though i mean before you were diagnosed with LS had you ever even heard of it before? let alone imagine that there is a disease out there that could change your anatomy! cus i certainly hadnt, i still cant believe it now its like the stuff of nightmares!
I actually had to Google shrinking painful labia and paper cuts....and then found out for myself. I've been on this page for a while now. I had to tell my doctor I don't believe this is herpes, being aggravated by my clothes but that I think its lichen sclerosis. I was mis diagnosed FOR YEARS even though I kept complaining. I went to someone else and was biopsied even though they also did not think it was LS. I didnt have classic white shiny skin. I had paper cuts all around my perineum and vagina. .... and clitoris fusing. We have to be our own investigators. This LS is illusive to the medical world because we are embarrassed to tell a doctor "Hey my clitoris hurts and I'm peeing on my thigh....and I cant stand to be touched"