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[deebarnes]

I've been diagnosed with lichen sclerosus which is a scarey thing for me.  Its like an extreme form of vaginitus and treatment is steroid cream.  Does anyone have any experience with this disease and advice on successful treatment they have had please??
Thanks in advance

[Taz2]

Hi deebarnes - I've carried out a quick search of the posts (search button in blue bar top left) and found this thread http://www.menopausematters.co.uk/forum/index.php/topic,30695.msg491155.html#msg491155  There are other members on here with this condition and hopefully they will be along soon with their experiences.

Taz x 

[deebarnes]

Thanks for the link Taz, I appreciate it!!

[Maryjane]

If you do face book there is a very good/ knowleadagble LS group they " interview " you before you can join .

[CLKD]

'interview'  what's that about ?

[Maryjane]

Because of I a am afraid anything to do with pelvic pain can attract perverts. So they ask questions , I do the same with the pelvic pain group I admin had two undesirables try to join this week.

[Rose B]

I have LS too.  I was prescribed steroid ointment - Dermovate, which def works. Ignore the warnings on the instructions about short term use. You'll need to use it long term for LS. 

I was just relieved to find something that soothed the itch and pain.  I was also advised to wear only cotton pants and wash them in non bio soap powder (Persil was recommended) and to avoid soap and shower gel to  wash my "bits". I use epaderm cream - its a bit solid, but does the trick. Prob best to avoid washing with anything with sodium lauryl sulpahte in it as it can be an irritant.  Also, to only use hypollargenic sanitary products or sensitive bladder pads e. g natracare, if relevant.   I also stopped wearing jeans and anything tight that worsened the pain. 

Sounds a lot, but don't panic -its treatable.  I was in severe pain a few years back and now only use dermovate twice a week and barely think about it any more.  Incidentally, I was diagnosed with low thyroid function shortly afterwards and there does seem to be a bit of a connection as in LS can be viewed as an autio immune disorder of the skin. 

There's some good info available at
http://lichensclerosus.org/main-information/

Also, vulval pain society is really good on range of pain issues (tho not specifically on LS)
http://www.vulvalpainsociety.org/vps/

Good luck

[deebarnes]

Thanks do much Rose B.  That's very useful information.  I  have been prescribed dermovate and was told to use a pea sized amount on the sore bits.... I just can't wait for it to clear up.  One ointment I have found to be amazing is YES  OB cream. 
So with that,  the vagifem and the dermovate I feel well on the way for getting the whole thing under control.  Maybe when I go back in a few weeks and ask about a blood test.  Did you feel any effects of having a low thyroid function???
I realise there is no cure which is sad really but I hope by maintaining it it won't develop into a nothing worse in the future. 

[Rose B]

Glad info was useful.  I had quite a few low thyroid symptoms - constipation, receding hairline, flaky nails, mental fatigue, tearful.  I attributed it all to menopause, until I started bruising quite dramatically at slightest knock.  No weight gain though which is a classic symptom.  Ive just looked up the connection and it is apparently that 1 in 4 LS suffererers also have an auto immune condition such a thyroid deficiency. 

Re LS- I'd forgotten about Yes OB - tried it thought it was good, but a faff having to stand it in hot water for a few minutes before I could get any out of the bottle.   Just had another look at their website and see that it's been changed, so maybe worth another try. 

Hope your LS starts to clear up before too long.  I found once I had it under control, it has been stable and I now self-manage.   I have a 10 x magnifying mirror I use to check myself regularly for changes that could be any early signs of cancer, which I guess is what you are worrying about.  I was a bit freaked by that risk too at start, but was assured by consultant that its quite rare.  Had forgotten about it until I read your post. 

[CLKD]

   Girls.  We are a Mine of Info on here