lichen sclerosis

Hello Itchy person, Cacran, Horses and anyone else who's reading this. Well update... gp couldn't get Hyalofemme for me but gave me the prescription and I've now picked it up from Boots (who ordered it in). Have just used first dose. Clear gel, no smell, not sticky - next dose is Friday (use every 3 days). I am also rubbing a very very small amount of Ouvestin cream around the entrance to my bits to help. I'm also using Vagifem every 3 days... sound like a walking chemist now. I'm reducing the Dermovate slowly - I've managed to get down to once a day over the last three weeks, and am now trying to get down to once every other day. Washing with the Epaderm (really thickly when I can) really helps soothe any itchy bit. Sorry to be so blunt here but can't pussy foot around this issue. It's my clitorus that drives me absolutely bonkers and last night I smothered myself down there with the Epaderm (hardly rinsing) and I have to say it did calm things down. I've been to work this morning and of course when the tingle/itch starts its impossible to go for a wash, but reading up about the Epaderm ... it can be used as a moisturiser, so I may just take a little to work with me and use as a cream if I need to. I'll keep you all posted on the Hyalofemme gel - hopefully this lubrication will work as the others make the itch even worse! Horses - have you tried Femfresh wash for the outside and venus mount - that's completely soap free and smells nice - maybe try a small area first to see if you react against it?

Kisses to all

Blue

Horses ... this is the place to open up - we're all in the same boat and it's comforting to know we can chat and help each other even if it's just a postal hug xx

Blue

Hi horses and blue lady

The red clover has anti-inflamatory properties and helps with itchy skin conditions as well as menopause. The tincture is a liquid herbal preparation in alcohol made from the red clover flowers. I've pasted this next bit from the site I order from as their explanation is clearer than mine would be! The alcohol preserves and extracts the active alkaloids from the plant. This liquid herbal tincture preparation is known to work more quickly and powerfully than other preparation methods. This is because the herbal alkaloids are absorbed into the blood stream more effectively.

bluelady - do you wear trousers at work? I deliberately wear a size too big and feel like I look ridiculous sometimes, but if I wear my own size, I get too sore from them so wearer a bigger size helps with that.

Hi everyone Just some update information. I ve been trying Perrin creme complete - its made from natural products - its from america and it costs roughly £50 for two pots including postage. Seems expensive but I find it very good and I have been using the same pot for about 4 months and its only half empty. Its very creamy and spreads like butter and you only need a tiny bit. It stops my itch and it seems kind to the skin. Also read an article about Omega 7 buckthorn oil capsules which helps with general dryness including the lining of vagina. It says it starts working after taking capsules for three weeks. I ve just sent for some and hopefully will receive by the end of the week. I will report back if I feel more lubricated. Going for my checkup at the doctors tomorrow. best wishes

Hi blue lady and itchy person,

Thank you both for all the information. Blue lady, if you have no reaction to the Hyalofemme would you please tell me, as I like the idea of moisturising once every three days, but does this mean you have to wash once every three days as well, as you could perhaps wash the Hyalofemme away? Also, will you go on using the dermovate as well? I know what you mean when you talk about a walking chemist. When I go off anywhere, my case is filled with pots and tubes!! I seem to be on the wrong page for some unknown reason, so havent got your most recent comments to hand. I agree that it is great to be able to talk over all these problems, it makes them seem so much smaller and it is nice to know we are all in the same boat!

Keep cheerful, dear friends,

Horses

Thank you Pinkcat for your update - look forward to hearing from you later re. omega 7.

Horses - this is how I'm planning the diary for example. Continue washing every day, (after every wee if I can - as advised...) with the Epaderm (actually doesn't smell too bad) Vagifem every 3 days, on the days I don't use the Vagifem, use the Hyalofemme (every 3 days). didn't use the Dermovate last night, but will be using tonight - will continue this every other night for 2 weeks. After the 2 weeks - if all is settled, I will reduce this to every 3 days.... so for example Monday Vagifem, Tuesday Dermovate, Wednesday Hyalofemme, Thursday Vagifem, Friday Dermovate, Saturdfay Hyalofemme. every other day (irrespective of what I'm using) a tiny-weeny smidge of Ouvestin round entrance to vagina. In answer to whether the washing will wash away the Hyalofemme ... I won't know that til the weekend. Am wearing panty liner as I'm still slightly spotting on and off with the coil I had fitted 6 weeks ago (Mureno - to help prevent womb cancer from the use of the Vagifem and Ouvestin...apparently protects it). Panty liners aggravate the situation I'm sure but have to be used at the moment. Can't wait to ditch them.

Sometimes I get really upset and feel pretty sorry for myself as I'm 55 and have always had a good healthy sex life and suddenly this - it's just not fair is it, but hey ho... have no option really but to have a good cry sometimes and then just pick myself up and get on with it

Cacran yes I do wear trousers - flipping pain, can't wait til the warmer weather - although not comfortable wearing no pants at all -

By the way, read about the epaderm ... if you swim you can spread this on your bits to protect it from the chemicals or salt in the sea.

Blue

I find that there is a problem which is due to an allergy. I can drink only one beer a day. But, I still have to be careful because three days, which would be three beers could also cause a problem for me. Usually this is regarded as a wheat infection type thingy. But, the problem is not just itch. I HAVE TO BE CAREFUL as the allergy causes the urethea to swell and mimics a bladder infection and I won't be able to pass urine. So, on top of all the info, write down what you have been eating 24 hours before the itch and see if a certain item comes up to eliminate that as a cause besides the sclerosis.

Hi all,

I agree with Justiris that keeping a record over a period of time of what we eat could be helpful, and could pinpoint other problems as well maybe. Certainly does no harm.

Bluelady, I too use pantyliners though for intermittent slight urine leakage which I know many of us do get as we get older.

These pads tend to feel what I call "dusty" - too many little loose fibres which cause itching. I cut up old smooth sheeting into strips and use them over the liners just securing at the sides so they are still held in place .When I am out I use folded Kleenex ultrasoft tissues instead which are the smoothest tissues I have found and I get no problems with them.I use these for loo roll too , and bulk buy when they are on special offer.

I've been reading all your recommendations thanks. The epaderm does sound useful.

I changed my emu oil to an Austrlian "pure" one but it is too runny so I think I'll probably switch back to Swanson free range again.

Hi all,

I think it would be a very good idea to mark down all the foods and drinks that worsen LS. My list would be pretty long, as definitely biscuits and cake are out for me, rice too, tomatoes (which I adore) chocolate and all sweets, just to name a few! Does this mean that I must live on broccoli and roasted meat! I had a really great Mexican meal on Sunday, which has had disastrous effects, but if I am honest it was worth it!! Too spicy, I suppose!! I wear panty liners too and have noticed that quite a few of us do so. All these moisturisers, etc. make things very damp down there!! I am also slightly incontinent, so feel safer with pads. Blue lady, I know just how you feel, it seems so unfair, but looking on the bright side there are worst things one can have, I just can't think of any right now!!

Take care and keep cheerful,

love Horses

Hi Horses, Update on the Hyalofemme so far (used tuesday afternoon, now Wednesday night)...so far no side effects, no discharge or extreme wetness, no itch, no rash. Early days I know, next treatment Friday afternoon. Watch this space.

x

Hi blue,

Glad all is going so well. You seem very knowledgeable, so can I pick your brain a little bit? You talk about cancer and I keep hearing people mentioning it. I know we are more at risk for this, bearing in mind the LS. Is it risky using Hyalofemme? I was planning to buy some. Also I have flaired up this week and am using dermovate every night, otherwise I wouldn't be able to sleep. Would I still be able to use this, plus Hyalofemme, plus regular washing two or three times during the day? Gosh, life sure is complicated these days!

Horses

Hi Horses. The cancer you're thinking of is the bit you're speaking about - increasing our risk slightly - just slightly. The prevention of cancer I talked about was ... because I am using Vagifem, and now using a little Ouvestin cream (both are oestrogen creams) I was advised to have the Mirena coil fitted as this stops the womb lining thickening and helps prevent endrometrial cancer. I had this fitted so I can use the Vagifem and Ouvestin cream pretty much as much as I want.

I don't believe the Hyalofemme to be risky as it's made up of what our bodies produce anyway. Replens as far as I can gather is absorbed by the vaginal walls, whereas Hyalofemme gel sort of clings on to the walls of it. (That's what it says in all the research I've done on the product anyway). I used the Hyalofemme, the same night I used the Dermovate. Last night I used a Vagifem and a little Ouvestin cream. I have continued to wash 4-5 times a day with Epaderm and so far so good. Yep life isn't ever going to be the same is it! You might find Boots have to order it in. Only took a day to arrive. Let me know what you think ... and good luck xx

Blue

I am seeing the dermatologist on Monday so will wait to see what she says about Hyalofemme and someone else mentioned Perrin creme. I am still looking for the perfect one and like the idea of only having to put on Hyalofemme every three days.

By the way, have you heard about conferences connected with Lichen Sclerosis? I don't know where I read this, but I would be very interested in attending, as they explain about how much to use dermovate. I always feel I am using far too much, as I know it thins the skin.

You are very wise to use other creams as well, but for the moment I want things to calm down.

HORSES

Hi, my 72 year old mum has just been diagnosed with LS and has had a biobsy which is all ok. I have suggested diprabase for a moisuriser. Is it better for her to take showers rather than baths?

I have read that this may be genetic. You all seem to have body or genital LS, does anyone have experience of it in the rectal area? The reason I ask is I have been being treated myself for various rectal problems and am now thinking that it could possibly be LS.

This condition is very new to me and I am in the medical profession!

Hi suwho,

I have LS in the rectal area and in the front. The rectal is actually more painful and at present is agony passing stools! I do not think the medical profession know enough about this illness. It was only when I went to see the dermatologist that I discovered I had LS and in fact had been treated for thrush for months, as my condition was gradually getting worse. Please do not hesitate to ask me anything, as I would be only too happy to help. I know how terribly alone and confused one can feel right at the beginning, but this forum is a Godsend.

Horses