lichen sclerosis

Hi suwho

I would say that showers are better than baths as when I have a flare up a bath makes it worse. I do need to use the dermovate in the rectal area sometimes too. I had an operation to lance and drain an abscess I got there and think the area was affected by that.

I have found a nice soak in a lukewarm bath calms my LS down in between using the dermovate, followed by a light smear of emu oil, - but I only get LS in the vulval area and just inside, TG. Sitz baths good too.

I think it is best to try showers for a while then baths and see which suits best.. What about using a small rubber ring in the bath, a child's one? I use a foam do-nut ring to sit on hard chairs with....takes the pressure off.

Hi Horses, Joodie and Itchy, thanks for your suggestions. I have passed them to my mum. I however am in agony and think I need to go to my gp. I am sure that the flare up of an anal fissure/haemarrhoids may be LS. I have probably only had a fortnight pain free in the last six months. Itchy person, I too find it painful to pass a stool and no amount of ointments work. The whole anal area feels as though it is throbbing. I have been seeing a Colo/rectal specialist and he just says keep using the cream and laxatives. I am at my wits end.

Hi suwho, I can really sympathise with you, as I have the same problem. I had a fissure after childbirth and it took about a year to get rid of it! I have had haemarrhoids on and off ever since, but this is nothing compared to LS. It is difficult not to scream with the agony of it. Once you start using dermovate on a regular basis, things start to get a little easier! It is always nice to know there is a light at the end of the tunnel! Try to eat plenty of green vegetables, or even prunes, as this makes it bearable when passing stools, although I expect your specialist has told you this.

Good luck and keep in touch.

Hi guys - update on the Hyalofemme ... all good, no side effects although possibly not as moist as I would have liked. I've decided to give it another two / three weeks and then if I'm not completely satisfied I'm going to try the Replens. apparently Hyalofemme is not absorbed but Replens is. I am using a smidge of Ouvestin cream around the entrance to my vagina and a tiny bit around my clitoris every other night which seems to be improving the dryness of it all slightly. How many of you have had the biopsy to confirm the LS?

Blue

Hi Blue,

I had my LS confirmed by biopsy last year, although it seems like decades ago already. I asked my dermo. about Hyalofemme but she didn't seem to know anything about it. She has recommended Zeroguent as moisturiser, so when these acrtic conditions have calmed down, I shall go and order some from the Chemist. She also mentioned Diprobase ointment, Hydromol ointment and Lipobase cream, if I am not happy with Zeroguent, so I am well satisfied with my morning's work!

I should imagine that most of us have had a biopsy, as these seems the only sure way of knowing what we have wrong with us! I was reading a description of LS, wnere it says that it doesn't run in families. This has been contradicted by at least two of the people in our little group, so it goes to show how little they know about LS.

Thanks for keeping me updated, Blue,

love Horses

Hi all.

Horses, I am sure it is hereditary only some of us older women's mothers might have kept it private from us, as that's how it was in those days.

These people who say it isn't, just make things up as they go along. It may not always be, but there is a large incidence of it in families.I sometimes look on another forum and many women say their mothers and sisters or auntsetc had/have it too, too many to be a co-incidence.

I never had a biopsy, my gp had to look it up on her computer when I told her what it was - but Suwho I think you should ask for one for sure, as you should not have to go through such agonising pain.

You said you have cream. I don't know what kind it is but have you tried just the ordinary stool softener, available on the shelf in Boots?

Hiya Joodie - I remember talking to you on here this time last year and we're still on the lookout for more info and trying to help others, onwards and upwards.

bluelady - I've never had a biopsy to confirm my LS as the consultant at the hospital was so certain that I have it due to the fusion of the clitoris hood. I have it just inside the entrance to my vagina too, it has narrowed the entrance - although I remember a lady doctor commenting years ago that for having had two normal births, I was very tight so I think I've had this for a long time. I'm dealing with it not too badly at the moment - tampons irritate it but hopefully I may not need to use them for much longer.

Take care ladies, it's good to talk. x

Hi Horses and ladies...Update. I have been using a smidge (just a smidge) of Ovestin over my clitoris and labia (tiniest smidge...) and I am seeing a slight improvement. I have continued using the Hyalofemme but as I said earlier, it's ok - no reaction but... not as moist as I would like. I have now started using KY Jelly as a lube and I have no burning or itching or unpleasant side effects from this. Still using the Epaderm after every use of the loo. Horses, how you getting on with the emollient? it's more of a barrier cream than moisturiser isn't it? I may consider the Replens later on, but at the mo all things are settling. How's everyone else? My check up isn't for another 2 months but I've started keeping a spreadsheet of what I'm using, and when I have sex, and any symptoms etc and I intend showing this to the consultant at the next appointment.

Hugs ladies

Blue

Hi Blue, I was recommended KY jelly years ago for dryness; I had completely forgotten about it, until you mentioned the name. Sounds like you are getting things under control. I, on the other hand, am not. I cannot sleep right now and am resisting putting on the steroid cream, as I was told that if you didn't use it for two weeks, but continued using emu oil as a moisturiser (or another product for that matter) it gave the skin time to start thickening up again!! Frankly I could use dermovate non-stop as the itching is still there, if not in one place then another! Just feeling a bit sorry for myself tonight!! I have been trying the CMO cream, but it hasn't helped unfortunately. I think I shall try them all eventually, until I find what suits me. As moisturisers go, the emu oil is definitely the best so far, but inconvenient as has to be kept cold! My clitoris has apparently disappeared! Wonder if it will come back.....

Take care,

Horses

HI Itchy. yes, still winning on points, but no knockouts, alas! It's good to share.

Hi horses. Just to say that although steroid creams/ointments are indeed known to thin the skin, I have been using dermovate for over ten years ,with never less than four day gaps,( except once and I severely regretted that and had to go back to scratch again with twice a day etc ) most frequently three day gaps, and my skin does not appear to be thin. I use an amount the size of a garden pea .I know it is easy to worry too much about it as I once did myself.

Must you really keep your emu oil in the fridge? Do others do that? I never have, nor been advised to, and I've not had any infections " down there", excepting a couple of times over the years slight cystitis, seen off by drinking more water. Emu oil is naturally anti-bacterial.

I can recommend 100percent natural free range emu oil from Swanson USA, by internet, though no doubt there are many others just as good.

I think it's really important to protect our skin from the ravages of LS/LP as itching can lead to harmful rubbing/scratching.

Mine has been not too bad recently, still works out about twice a week, applying when or soon after the itching starts up, and though I know some people do get away with less frequent steroid use, on the whole I'm okay with this.

Protect your skin from the LS !!

now if you want to toughen up your skin you should check out using a combination of oestrogen and testosterone, 3 to 1 ratio if that is safe for you. check with GP. Personally I don't. but it is accepted and prescribed in USA .I'm not an authority on this, just passing on what I have heard, but you can check it out. Generally speaking we in the UK are a bit behind with treatments.

For extra help do try www.lichensclerosus.net, then on the Living with LS page, click on LichenSclerosus ( note the different spellings and put real dots of course).

Also there is a facility to contact each other directly and privately within that forum if you want to..

Joodie x

Sorry, click on LichenSclerosis I meant !:[

Hi Joodie, Thanks for all your comments, especially about using steroid cream at least every four days, as I thought I must be the exception to the rule, as my LS seems to be with me more than without, if you follow! I will try out the wwwls site also. The reason I put the emu oil in the fridge is that, when I received it at first, I was told to keep it in the fridge, although it still contains the same good qualities if liquid. However, I find it a bit awkward to deal with when it isn't solid and seem to make a right old mess of it!! Also, my husband travels abroad a lot and I try to be with him regularly, so it isn't convenient to have emu oil in its liquid form, although I think it is a great product and has helped me a lot. I don't think I would be able to use any more products, as I have to be very careful as I suffer with skin allergies, especially when using two different products at the same time. However,having said that, I haven't had any complications so far.

Great hearing from you,

Horses

Hi Horses. sorry about the allergies.

I see what you mean about the oil. I am using a rather runny Algar australian emu oil just now and it is messy allright, so I'm going back to the Swanson one which comes out in a "glob" so to speak - much more manageable.

Have a good night's sleep tonight !