Anyone with Lichen Sclerosus out there?

Oh, I also have ridges in my fingernails....derm told me it was due to age.  I'm 60.  Crazy!!!!

I have only this week been diagnosed with Lichen Sclerosis. I also have nasal flare ups and terrible sinus priblems so will ask if there is a connection. I'm keen to here how ladies find their own personal comfort.  At the moment even doing a bowel movement is the most painful experience and sex is near impossible

Hi Ternet,

Sorry to read you have just been diagnosed with Lichen Sclerosis - Don't know how much info you have been given but until you get some more experienced replies you could check out this Macmillan info page about Lichen Sclerosis - (link)

Hope this is of some help, take care, George & Jackie

Thank you, I'm in the dark at the moment so will read your grateful link. I'm very uncomfortable at present and have quite advanced Lichen Sclerosis.  I'm using dermovate but would love to hear how everyone gets by day to day, I need light at the end of what seems like a dark tunnel

Hello and welcome to the forum.

I'm very sorry to hear about your situation. I've no experience of this condition myself but  I'm sure some of the ladies in this group will be along soon to offer advice and support.

I hope that the link to the information on the Macmillan site that Dreamthief provided has helped you. You  may also like to take a look at this site - The Association for Lichen Sclerosis Vulval Health- which has lots of information that might be of some help to you.

Wishing you all the best

Sue

Thank You, I'll look at that too. I had been unwell since last Nov '14, thrush, urine infections, and visits to A& E. Knowing nothing about or ever having heard of LS, I had noticed the pigmentation change in and around my vulva, inner labia and clitorus. I'd mentioned this to three different GPs and since no one suggested having a look I didn't think it was serious. In ignorance, I honestly thought antibiotics had bleached my private areas?  Over these last few weeks going to the toilet has become more difficult and intercourse became impossible. Both make me feel as if I'm going to split in two along my perineum.  A visit to the Doctor diagnosed Lichen Sclerosis and I have been given dermovate to use in the evening. It has been suggested I go back to see the Doctor in two weeks however can not get an appointment for four weeks? Tips on safe lubricant or hygiene tips would be appreciated, and I'm wondering if I should take myself to A&E to ask for a referral

Hi

So sorry to hear you are suffering so badly. I suffered with lichen sclerosis for over 20 years. The trouble with this condition is that doctors have no idea what causes it. I was given steroid cream to use which helped but then when I stopped it flared up again. I was then told it was something I would just have to live with and had steroid cream on repeat prescription for when it was really bad. No follow up or anything. I was told to use aqueous cream for washing. The constant itching used to drive me mad.

It is disgusting that you have seen 3 different doctors and not one of them has referred you to hospital to see a specialist. 

Has anyone suggested having a biopsy. When mine turned white they gave me a biopsy to see if it was 'on the turn' as the doctor put it. I had no idea it could turn into anything else. Over the years I had four biopsies and it was after the fourth one which was to remove a lump I discovered I had vulva cancer. I had wide local incision and sentinal node removal in January 2012 and have been in remission for three years now with no sign of it coming back, and the good thing is no more itchy watsit!

I think you really should contact your doctor and ask for a referral to hospital to see a dermatologist.

Big hugs

Cazzi x

I have suffered from LS for about 20 years. Endless GPs failed to recognise it and kept prescribing thrush treatment. Eventually in 2011 I was referred to a dermatologist who diagnosed LS by sight and didn't do a biopsy. After moving to Germany I was sent to the skin hospital, they did a biopsy and I had vulva cancer. Straight to the women's hospital for sentinel node biopsy and 12 further vulva biopsies. Nodes were clear but 3 of the biopsies were also cancer, one of which is so close to the anus surgery with full margins would risk losing anal function. So here I am in hospital for 6 weeks of chemo-radiation. They say there's a 90% chance of this curing it all, otherwise it will be a vulvectomy later.

LS so often goes unrecognised but it is so important to push for the right medical care.

Cathy xx

Thank you for everyones advice. On reading all of your experiences I have had an appointment with the Practice Manager at my Health Centre to insist on an appointment next Wednesday. It is truly awful to think, something so serious doesn't make a GP try their best to refer to a Specialist. Here's hoping by next week I'm on the way to seeing someone who can direct relative treatment. 

I'm due a telephone consultation with the Doctor who diagnosed my Lichen Sclerosis.  She asked to see me in two weeks however the Health Practice have since told me the Dr is fully booked and have not been helpful. I have made a complaint to the Practice Manager and at the very least have a telephone consultation. Im disappointed at not getting an actual follow up appointment and will be asking for an immediate referral to a Gynacologist. In the meantime, may I ask...............Has anyone had, as I do at present, difficulty in a bowel movement abd would it be helpful to use a mild laxative? What is your experience in this department? At the moment I struggle to go to the toilet and move my bowel without a painful sensation of feeling as if I,m going to split in two. Im not constipated, however Im wondering if I would benefit for a more comfortable experience if I took a laxetive until I get more advice from a Gynacologist. Both of my local Pharmaists would not advise as thy both told me that they had never heard of Lichen Sclerosis.