Atrophy in Lichen Sclerosis

So have you all abandoned me and gone with Margaret to a new thread? Nothing being added here and I can't find the new thread if there is one! :-(

Hi Nikki,

so sorry I appear to have stopped contributing. I was waiting for something to report. the diet is not going terribly well so I was wanting something more positive to say than that.

I've actually had a bit of a flare up recently,along with having to fight off a bit of depression (the two do seem to go together). I broke a golden rule and was drinking Earl Grey tea which seems to aggravate things - that and raw tomatoes - not comfortable.

I hadn't started a new thread but will do.

I certainly haven't abandoned this thread although nobody else seems to be contributing either, which is quite odd. Did you want to ask something? I can try to answer from my own limited experience.

Afternoon Girl's, Sorry I haven't being posting anything lately, I'm so up to eyes in it at work at the moment, working 11 hr days is no fun.

I went to the Vulva clinic a few weeks back, & the Doctor actually wasn't too sure if I do have LS or not. They are going to carry on treating me an LS sufferer & I have to go back in March next year. So no real news to report as such, and sincere apologies for not posting more often lately. But as soon as I have more time I will give you a better update about my appointment.

Best wishes T x

Hey Margaret and LS Sufferer

Of course people are busy or have nothing new to report. It was just so odd that NOBODY was posting I was convinced I must have missed something telling me where everyone had gone to.

I started this thread because of shrinkage concerns of mine whereas there are already loads of threads dealing with irritation which I'm lucky enough not to suffer from. However my inner labia are now completely gone. I've not found a lot of support around this area of LS but it has still been lovely having contact with you all. I do think the comparing of information is interesting and useful. I repeat what my female vulva consultant told me. There are currently NO gynecologists out there who are interested in taking on LS as their specialist subject so the research is simply not happening. So there isn't anyone we can take our collected information to. I believe we should keep collecting it so if ever this does start up as a new area of research we can whack them immediately with whatever we've got. And also we should make as much noise as possible about how blooming many of us there are suffering with this insidious condition, loud enough to make SOMEone consider research in this area.

It's Chrissy by the way!

Best wishes EVERYONE

Hi Chrissy, the shrinkage is difficult. I asked my GP who said that she thought it was more to do with my age than the condition. None of us discuss this with older women, so it's difficult to know what to think. As far as using the cream is concerned, it is probably worth using it. I did a similar thing by using a spray which took away the discomfort , and so did not apply the strong steroid cream. This meant that the condition actually became worse, but I was not looking at it (out of sight out of mind). Intercourse became impossible and I haven't found anything which improves this unfortunately. It is very lucky that I have a supportive partner.

It is incredible to me that nobody is researching into this annoying condition. i fully realise that if I was any younger and did not have a secure long term partner, I would be feeling deeply depressed aboutIf this gets to enough people then we will have a lot of data to hand over to interested (huh - where are they?) parties in the health service.

One thing I really feel the need to know is when this condition was first encountered and recorded. Is it a modern phenomenon?

Anyway Chrissy, all best wishes to you - you are not alone

Margaret

Hello everyone,

I've only just found this forum and read all the posts with great interest. I'm 51 and have been suffering from this for around 20 years, it was only diagnosed 12 years ago after changing GP's and like most I was treated for thrush for many years.

I had an operation several years ago to part the labial adhesions across my clitoris as the skin kept splitting which was very painful, I was told to use Dermovate ointment to prevent the adhesions coming back but sadly this has not worked and they have returned. I get periods where the itching is really bad and when I do I use Dermovate daily. When its settled I only use it a couple of times a week. Intercourse is almost impossible but thankfully I have a very understanding husband. My inner labia has also disappeared completely.

I have now been prescribed oestrogen suppositories to use twice a week to keep the skin in my vagina from becoming too dry (more to do with age I think) and also Hydromol ointment to wash with, both seem to help along with the Dermovate.

It's a great pity no one is researching this as obviously lots of women are suffering. I have come to terms with it over the years but also think if I were younger and did not have such an understanding husband I would be quite depressed about it.

Since reading the forum I have ordered myself some Emu oil which I had never heard of, hopefully it will work for me too.

Keep up the good work with this discussion, it is very helpful and if I can help anyone with advice I will.

Best wishes to all.

Hello everyone! I have suffered with this awful condition for well over 10 years (not sure of exact time). I am 68 years old and married for 48 years thankfully otherwise it would be a negative impact on my marriage.

I live in Australia and today I am due at the Mercy Hospital for my regular appointment at a special clinic that addresses this disease with specialists (gyno and skin).

My clitoris has been covered for years and recently the inner lips have disappeared as well.

This condition causes anxiety but usually I deal with it except when something changes like the recent atrophy (if that is the correct term).

I feel sorry for young women with this condition because it is bad enough when you are older as I am.

I use Advantan fatty ointment as required. The areas affected also include the anus which is a fairly recent addition to this horrible condition.

I don't use any other treatments because I trust the advice I receive from the Mercy Hospital.

I will post again after my hospital visit today.

Cheers,

Kathleen.

Hi all,

I thought I'd let you know that I'm back on steroids after a break and things have got a lot better than they were! I've just finished an intensive 2 applications a day 4 week dosage and now I'm using it once a day for 2 months. One thing that has REALLY helped with healing is applying a mixture of Sudocrem with Emu Oil twice a day - amazing! It's healed the area and got rid of the redness and tightness. My partner and I were able to have sex for the first time in months last weekend and it was pain free! I can't recommend it enough. Just use a pea sized amount of Sudocrem and a drop or two of Emu Oil. x

This is the comment after my hospital visit today. The atrophy has been caused by using the cream which I have to be careful not to overuse in future. I mentioned the emu oil but the specialist dismissed this idea but recommended dermeze which can be used every day in all areas safely. She confirmed the inner labia are gone and partly due to the cream as mentioned.

I will continue on the advantan fatty ointment but be more careful where it is applied and how much.

It is a balancing act to keep the problem at bay but not cause any damage from the treatment.

Hope this helps....

cheers, Kathleen

Well it's all very puzzling, that's all I can say! When I was first diagnosed about 4 years ago now I had ice white edges to my labia but no irritation at all and although I was prescribed Dermovate I didn't use it for about 2 years because my local hospital consultant that my gp referred me to (no idea what he was a consultant OF) and who took my biopsy to confirm my diagnosis was on auto pilot as far as treatment was concerned. He kept telling me how the Dermovate would sooth my itch and I kept telling him I didn't itch but as far as he was concerned LS caused certain symptoms and his prescription speech only had one version which he delivered to me and that was it! He didn't even want to see me again. It was only about 18 months down the line when I was definitely sure my labia were disappearing (I'd suspected for a while but hoped I was imagining it) that I went back to my gp and insisted I saw someone else who knew what they were talking about! My gp was very good and researched for me and made me an appointment at a vulval clinic at another hospital some way away. This lady vulval consultant said that if I'd used the Dermovate it may have maintained my labia and I still use it now according to her advice.

What I'm saying is that whilst Kathleen has been told she lost her lips through overuse of her steroid ointment I lost mine through none use of it! Mine are completely gone and disappeared very quickly indeed.

I also use liberal applications of Aqueous cream as per my vulval consultant's advice, which no one else on here has ever mentioned. Its a simple emollient which enables my bits to slip around each other so keeping me comfortable during movement now that they don't fit together the way they used to. For people who DO have irritation Aqueous isn't perfumed and has no active ingredient medicinally. It simply greases the works so to speak and can be used as a cleanser so you don't have to use soap.

Hello all,

I think I mentioned in my earlier post that I was prescribed Hydromol ointment, this is an unperfumed aqueous ointment that you can use liberally to keep yourself moist and also to wash with. It is quite expensive to buy from a chemist but my Doctor was more than happy to prescribe it for me in 100ml tubs which saves quite a bit of cash - worth asking about.

Anything to stop the itch!

Good luck.

I too use an emollient. I use Epaderm and have this prescribed in a HUGE tube, about 500 ml. I've lost one inner lip but have been told only use the Dermovate if I suddenly get white patches or sores. I tested negative for LS but they said it could very well be the start of it, and to check regularly that things aren't changing. Still using Estrogen cream and Vagifem every 3 days.

X

Blue