lichen sclerosis

Hi ladies, Just wondering how you are? My lichen planus (I have LS and LP) is giving me a lot of trouble and irritation these days in the vulva area, but I am also suffering behind as well. The awkward thing is that as soon as one site calms down, then the other starts up so it feels like a constant battle. Anyone else in the same boat?

Horses

Hi horses

I had quite a bad flare up of LS, but it has hopefully settled down again. The LP is annoying me just now as I have a few itchy sites that are turning into the pink spots with frosting and I don't want to be covered in them. Once they have started though, I don't think much can be done. I had been picking at one in the hope that if I could get through the layers to smooth it down a bit then the dermovate might heal the rest of it but I just caused it to crack and bleed. Wish someone could come up with something that would get rid of them!

Hi itchy person,

I know what you mean about the pink spots with frosting, as I have quite a few on my arms. They are like hard patches and very unattractive!! Try not to pick at them, as I imagine it will only make them sore. I'm a fine one to talk, as I am often rubbing at them in the hope that they will miraculously disappear. I understood that LP will eventually disappear, or am I being too optimistic? My LP lower down is much more of a problem and harder to treat, according to my dermatologist.

Take care, I am thinking of you.

Horses

Hi Guys. Well I've had my second appointment with Dermatologist who said she still thought it was LS but that she would do a biopsy to confirm. I have this tomorrow. She said worse part is the injection to freeze, then I will feel nothing. Said it's 10-14 days to heal and not to use Dermovate or Ouvestin while it's healing, only the Epaderm to wash and try to keep it dry while the stitch dissolves. When I had my baby years ago I had 5 stitches and was told to sit in warm salt water to keep area clean and help heal the stitches. Any views on this please would be most welcomed. Feeling a bit anxious but also bit annoyed that the letter says I won't get my results for 6-8 WEEKS!!! Let me know what you think about the mild salt baths?

Blue

By the way, still using KY (when we do ... which isn't too often....) but it dries out quite quickly. Has anyone used Yes Yes Yes here?

Blue x

Hi Blue,

I will be thinking of you tomorrow. It will quickly be over and then you will know fair and square if you have LS or not. I think the idea of warm salt water is excellent, as it is well known that salt is a healer. My father has suffered with an ulcerated leg for years and was told frequently by his doctor to go swim in the sea, as the salt would do it good. It might be a little too cold to plunge into the ocean, so try warm salt water, as it cannot possibly do any harm. 6-8 weeks seems an awful long time to wait, perhaps they will have the results sooner!!

I tried KY a few years ago, but it wasn't 100 per cent successful, but we are all made differently so give it a try. Please let us know when you get the results and best of luck for tomorrow.

Horses

Hi blue

I have tried yes yes yes and coconoil, both were good but I felt they left me with thrush symptoms, so only use when absolutely necessary. Although the salt water baths sound a good idea, I know that baths seem to flare up my LS - but if the water is not hot, it may be okay. I spent more time in the sea on holiday last year in the hope of it helping my LS, but it never and before I was diagnosed I tried sea salt baths. If they have said to keep it dry while it heals, maybe not a good idea to sit in a bath but you could still quickly wash with it.

HI guys, Well biopsy done thank goodness. They were really careful and all went ok. Not allowed to use Dermovate or Ouvestin cream for 2 weeks. Asked about results and they confirmed it will be weeks before I hear - so now I'm just trying to forget about it until the phone rings. The Yes Yes Yes lube has arrived - obviously can't use it for a while but I'll keep you posted. I've also ordered some 'things' for me for hubby to use when I'm not in the mood. I've bought some massage stones. Apparently you heat them up, then let them cool down till they're just warm and then using massage oil you put them on your partners back and neck (mine of course) as I want some TLC while I'm feeling so naff. I'm now thinking more in line of my needs rather than feeling guilty (which I think we all feel at times) - so building up plan of action for those nights where i want a bit of fun without the trauma. I'm trying to keep positive about all this, as there really isn't much I can do about things.

Swimming in the sea? Don't forget the sea is not sterile. When I finally get around to swimming either in a pool or the sea I will be putting a layer of Vaseline to waterproof the area.

Dermatologist said not to have salt bath for 4 days, only to use the Epaderm and pat dry thoroughly. Will let you know when I've got the results.

Blue x

Hi Blue, Glad for your sake that the biopsy is over and that the diagnosis will finally be made! The not knowing is unbearable. Good luck with the massage stones, which sound fascinating!!! I need more than a neck massage these days!! If you do ever fancy a dip in the salty sea, another alternative to Vaseline is Zeroguent, which is a sort of barrier cream, very cheap to buy and I am using it every chance I can. I am hoping my doctor will put it on my prescription next time I see him! I would perhaps have second thoughts about a swimming pool, as Chlorine does not agree with my skin at the best of times.

Keep cheerful and don't be blue!

Bye for now, Horses

Well it's now 51 days since my biopsy ... not that I'm counting! The waiting for that letter to arrive is driving me as potty as the not knowing for sure. I was warned 6-8 weeks for results and on Monday it will be 53 days so I think I'm well within my rights to phone the hospital to see what's happening. I keep getting horrible thoughts that they may have lost my results! I don't think I could do it again. Just seems an awful long time to wait.

Blue

Hi Blue,

I think it is appalling that you have been kept waiting such a long time for the result of your biopsy. You must be climbing the walls by now! You would definitely be in your rights to phone up and find out what is happening and I strongly recommend that you do so. Please let me know how you get on and I will be thinking very strongly of you until I hear some news. I wasn't kept waiting as long as that, but I did eventually go private, which probably makes a difference.

Good luck and hope you hear in the next few days.

Horses xxx

Well I rang the hospital this morning (thought I'd get in early) and said I'd been waiting 8 weeks. They said they'd sent a letter out on 12 June and copied it to my gp (who by the way, when I asked if they'd heard anything 10 days ago, they too hadn't received anything). Anyway the secretary kindly read the letter to me, which confirmed I do not have LS. I have mild non specific chronic inflammation. Whilst I know this is good news, it doesn't help with the soreness, the rashes, the inability to have intercourse about 7 times out of 10, the disappearing clitoris, the lack of inner lips .... They are going to give me six--monthly check ups to monitor things,. I hope you all don't mind if I stick around on this forum - I feel I've made some good friends here.

X Blue

Hi bluelady

Glad that you have some news at last - so annoying that they sent it out as long ago! Of course we don't mind you being on the fourm you are welcome to stay around - what you have sounds just as bad as lichen sclerosus, but hopefully yours should get better in time. Thanks for keeping us posted.

Hi Blue,

What strange news! I hardly know whether to congratulate you or sympathise, as it sounds as if you have exactly the same symptoms as we have in this forum. It has to be good news though, because LS is for life and presumably they will eventually manage to cure you. Please stay with us, you are part of our little group now!Make sure to keep in touch with your doctor, even if you have to pester a little, as six months is a long time to wait and see what happens.

Take care of yourself and please let us know how things progress.

Horses xxx

Hope they didn't mix up your results with someone else's, blue lady. They certainly didn't manage to get them sent through to your GP!

Did they check for LPlanus at the same time being as the effects are somewhat similar?

Mind you if you used dermovate it should have shown immediate improvements, so that is a marker.

Whatever, commiserations, as it's obviously distressing for you.