Anyone with Lichen Sclerosus out there?

   Hello everyone, firstly can I thank this website for arming me with the information I needed to at the very least feel comfortable. If it was not for the information available here as well as speaking to a Doctor on then helpline I would still be where I was two weeks ago. Diagnosed with Lichen Sclerosis, prescribed Dermovate and no other information. I had presented to the Doctor all of my symptoms, difficulties and discomfort, yet the only advice I was given was, 'use the dermovate at night and don't use toilet paper again?'. I couldn't even get a further appointment as a follow up. I've spent the last two weeks investigating the LS NHS Website and this one. Through this I have gained the information I needed and understand now, why I am having trouble with intercourse, why my bowel has decided it has a mind of its own, why my inner and outter labia and clitorous has lost its pigmentation and why my labia has practicarly disappeared! I also realised that I don't have to be this uncomfortable and can get products to help. So off I went, had the telephone consultation this morning and complained that the quality of care and information with no after care was in

My own words, 'disgusting!'. After reading all of the inflrmation on this website, as well as reading other LS sufferers Blogs I asked for prescriptions and received, Replens for internal moisturiser, Dermo 500 for application as often as required during the day until I use the previously prescribed Dervovate at night, a dermo shower product, a YES Lubricant for if and when sexual intercourse takes place and senna before bedtime to help a more comfortable experience in that dept the following morning. I also insisted on an immediate referral to a Gynacologist with whom I'll deal with   from now on. From my experience I would suggest to anyone; if you are faced with a brick wall regarding Lichen Sclerosis, take action and be assertive when dealing with Professionals when they are unsure. I had three Health Professionals tell me they had never heard of LS, but thanks to you guys, I am experiencing my first comfortable day In three months.  Thank You

well done for fighting your corner, you will definitely inspire others to do so

While I wait for my appointment to see a Gynaecologist (my first), could someone tell me what to expect and how to prepare

Can I just say that I am so sorry for not replying to you before now, but I am not a member of this group, and didn't realise that you had posted further.

I don't have hep c, but after I was diagnosed with the lichen planus I realised that my own Mother had all ofthe symptoms I have, but wasnever diagnosed, and no one put them all together to identify a systemic disease.

Chris xxxx

 Hello Chris and Thank You for your reply. I have just recently been diagnosed with Lichen Sclerosis. I lefthmy GP with little to know advice or  information so took to the LS NHS website and this wonderful group. I feel alot more in charge now I have the right information and fellow friends within this Community. I'm looking for advice about what to expect and what I should do to prepare for my first visit to a Gynacologist

Hello Ternet

If you have had smear tests done at your GP surgery, you will have experienced a similar examination to the one you will have by the gynaecologist.

They will look at the area, and could do a manual examination to feel for normal tissue.  They will use a speculum to enable them to look inside your vagina.

There is norhing really that you can do to prepare for this, otherthan wear a loose fitting skirt, as it is easier than wearing trousers.

I hope things go smoothly for you.

love Chris xxxx

Thank You Chris, this is the information I was looking for. Very much appreciated

No problem at all my friend.

Try to relax a bit, as they do this job all the time.

love and hugs

Chris xxxxx

When was your first appointment with a Gynaecologist and how long did you have to wait from being diagnosed with LS to the appointment. I'm disappointed that after being diagnosed I was told I should have a follow up app., within two weeks.  The GP Receptionist was like Armour Plating and I waited six weeks for a follow up app., and after been referred to a Gynaecologist I'm still waiting for a first app nine weeks later?

After much suffering with continual itching and many prescribed creAms by my doctor I was referred to the hospital and diagnosed with lichen sclerosis and given a lipcoid cream and asked to go back three months later for check up where I was told by second doctor that I had been wrongly diagnosed and discharged.  I have continued with flare ups and continued itching which really gets me down I have white spots and ideal very tearful. I am tired of fighting I feel like I'm wasting my time going to the doctors and I would love s good nights sleep without this continual itch and discomfort can someone help me I really am at my wits end thank you