lichen sclerosus - sorry TMI!

[caitlinohara]

Been to the doc's yesterday and she reckons I have this. Apparently it's quite uncommon in people my age (37) but I have all the symptoms - previous doctor said thrush but no thrush treatments worked so I went back for a second opinion.

Does anyone else have it? My symptoms are intense itching (doc prescribed steroid cream but it doesn't seem to be helping yet) and the skin of my vulva is quite swollen. The whole clitoral area is very swollen and I have a tiny itchy white spot near there which burns when I touch it. I have to go back in 2 weeks to see if there is any improvement and she took swabs to confirm it. Apparently the symptoms can be controlled to an extent but there is no cure and you're basically likely to be stuck with it.

I am so about it - I'm not particularly worried about the increased cancer risk as this is pretty minor and I know I will be vigilant about checking from now on. I am more worried about the overall effect this is going to have on my sex life. Dh is hopeless when there is anything wrong with me - he alternates between ignoring it/being irritated usually, and in this case seems unwilling to take it seriously but I am genuinely worried that it will completely change sex for me - i don't orgasm from ps so have to have clitoral stimulation and the way it is at the moment I can't see that happening

Someone I know was told they had this but it actually turned out to be a form of eczema, for which they were prescribed a mild steroid (I think) and I think it's ok now.

Might be worth getting a second opinion if your test comes back inconclusive?

Im 37 too and was diagnosed with it on Tuesday at the vulval dermatology clinic at hospital. I am still intensly itchy swollen and and miserable. Also scared and worried what it means for the future.
I have been prescribed clobaderm steroid cream and washing in hydromol.
I was rather shocked to find out mine was advanced with vaginal atrophy, especially because I have been back and forth recently with gynea issues/mirena coil etc and no one mentioned it.

I have had intermittent irritation for about 18 months but kept putting it down to soap powder or allergy to sanitary towels etc but since November its been co
nstant, hence my gp visit and subsequent referral to hosputal.

So sorry gothmummy. I wonder if I have had it a while too, I've had other symptoms but put them down to childbirth. Steroids not helping at all so far. I was hoping for some temporary relief after applying it but nope.

verbena I would love it to be eczema but having read up on both just in case, it does sound more like LS.

I have it. Ironicaly my mil has it and had regaled me with stories of hers that suddenly made me click as to what was wrong with me and i braved the doctor.
I had seriously cracked skin and itching was unbelievable and i'd scratch in the night and wake up bleeding etc. in hindsight mine started after my dd2 cos i kept putting it down to hormones etc but it didnt improve.

I use the steroid cream and its massively improved. It took a good 12 weeks maybe to feel on top of it and i freaked out at the lack of sex/no cure diagnosis but for me so long as i keep on top of the steroid cream its all okay. I do struggle the week after my period where guaranteed it'll flare up a bit. I was distraught at first but it really is okay for me not something thats particularly even on my radar if im keeping up with my cream.

Hope that helps. I was diagnosed about a year ago now.

thedoctorswife that is heartening, I'm pleased you're ok. Do you mind me asking about how it has affected your sex life? I feel like dh is never going to want to do oral sex again, but I'm pretty sure I would feel the same! Did the doc advise you on this stuff? I didn't ask but I wish I had now. I have a follow up in 2 weeks so I will def discuss it then. Feel lucky to have lovely doc!

I had a female doctor who was brilliant. And luckily i was pretty clued up thro my mother in law. Sex, it has affected it in that i get much more sore (i shoulda name changed for all this lol) the doctor recommended sylk (lube) less irritating/drying than ky. The steroid cream affects condoms too. Initially i couldnt even contemplate sex because my skin was literally cracked and raw but now its all ok really. My dh is fine with all the extras too

Just give the cream a chance to work. I was so swollen initially and properly bleeding or scratching myself to death no way could i have had sex in my wildest dreams but now its fine.

Thanks doctors - I am sat here squirming in my seat and praying for it to kick in. Do you know of any natural remedies I could try as well? I am assuming that diet is irrelevant.

Hi, caitlin. I was diagnosed with this a year ago, I am 33.
The steroid cream only took a while to kick in, and after the 4 week it had cleared all the scabby and white patches up.
It hasn't flared up again, and for some people it doesn't. I only use water to wash down there, I occasionally have a bubble bath - for a treat but as a rule I just bath in plain water.

I get dry and sore around the time of my period but otherwise I am ok.
I think the cancer risk is pretty rare and more associated with very very severe cases.

Good luck, I hope you feel more comfortable soon.

Natural remedies dont seem to work i found. I get worse after my period but i think its a lot to do with not being able to put cream on as well during af time. I only wash with water or aqueous cream if im paranoid about being dirty lol. I add nothing to my bath and i dont rinse my hair in my bathwater either.

Caitlinohara I wonder if the steroid you have been given is strong enough? Mine says it is "very potent". I think its working......
steroid cream affects condoms does it? How? Does it make them split? Thats what we use in the rare occasions that it is possible.

You have my sympathies, it is not a nice condition to have. Persevere with the treatment and eventually it should burn itself out though. If you are not responding to the first steroid then there will be an alternative your doctor can prescribe (it should be a super potent topical steroid). After a few months you will hopefully find that you only need to treat with steroids once or twice a week. Epaderm is good for washing with. The risk of cancer is low but real and you need to make sure you are examined at least yearly on a long-term basis, even when the symptoms have improved. From my experience 37 is not a particularly unusual age to have this at.

Mine is doing nothing so far but it has only been a couple of days. I've been given double base to wash with and to apply if the skin feels dry but it burns when I put it on. There is blood inside the urethra area now, I think the swollen skin may have rubbed or got caught on my underwear or something, I felt a sharp tearing sort of pain and looked and saw blood. Sorry I know TMI but I have no one else to talk to.

gothmummy am glad yours seems to be working! My doc said the cream she gave me was very potent - it is 1%.

I wasn't told that about condoms - that's what we use too. I wouldn't go back on the pill if you paid me either. Not that it's an immediate concern!

caitlinohara its more that today I thought the symptoms might be slightly abating rather than feeling much relief yet. OK, my skin is bleeding too. From what I have read I think thats normal.
Regarding sex, the lovely consultant told me that after about 4 months of steroids it should be perfectly possible to have a normal personal life. She told me that although it was not curable, I should not have to live with the symptoms.
Hope shes right.

Caitlinohara you can talk to me by private message if you want to talk about anything regarding LS on a forum. I dont have anyone to talk to either, none of my close friends have heard of it and my mum is just worried that its been caused by my two difficult births, and I dont want to stress her out any more as she is so worried.

*I mean if theres anything about LS you dont want to discuss on a forum.

Cheers lovey I will do that.

It's really reassuring to hear from people who have got through this. I love Mumsnet.

to you all for replying x

Interesting, I also had this diagnosed at a similar age, between children. It must be really mild in my case, nothing like as annoying as other people are saying. I would say misdiagnosed except the consultant said the same and did a skin biopsy which confirmed. A different GP has since said no it's thrush, but when she sent off a swab for that it was negative. I mostly just get itchy and a bit swollen when I use sanpro.

Have you used Vagisil? It can cause chemical burns! Google allergy to Vagisil and read about it.

Yes, vagisil was recommended to me by a previous GP for the intermittent irritation and gave me what felt like the worst case of thrush ever.

Goth, do Google it as it there is a letter on healthboards about this woman's terrible reaction. It's very descriptive and will probably bring back memories. When she urinated, it was like peeing needles.

I asked about the cream affecting condoms and my dr confirmed that yes it will i think cos its a paraffin base in the cream? And can break condoms down.

Hi, I have just been to the GP today and she thinks I might have this. She didn't diagnose me officially though. I have a few white patches down below one of which feels a bit scaly. I don't have any other symptoms though, no itching or anything just the white patches. I only noticed them by chance as I felt the small scaly bit so had a look.

Anyway, she has prescribed the strong steroid cream for me to use and I have to go back in three weeks. I was just wondering what you thought, does LS often present itself without itching? I am now worried sick about the auto immune aspect and cancer risk :-(

Im not aware of scaly patches but do know is that I have only had intense itching since November, though have intermittent irritation for last 18 months. However i must have had it for a long time without realising as my inner labia have fused to the outer and i have atrophy. You may wonder how I didnt realise this, but I have had severe anxiety issues around that "area" since a horrible birth/bad stitching experience.
So I never looked :(

Can i put vaseline on it to protect it when I'm running?

anyone who is suffering, i urge you to look at your sanpro.

i'd used always towels for years, and when they started perfuming them i thought it was a good idea. went to doctor numerous times, tried steroid creams, natural yogurt, even in desparation tried some ovex!

read about the perfume in sanpro causing burning sensation allergies. this is common and well documented if you google. immediately switched to perfume-free sanpro and not an itch since! seriously, you have nothing to lose and surely its worth a go! now even walking past the scented ones in the supermarkets makes me feel nauseous!