proper diagnosis and treatment?

I thank you.  You described LS so very well.  I wrote some of your lines down in my notebook about LS.

Sedg, You are so right, 'bothersome' is an understatement. This is a frightening ugly beast and bothersome suggests a mild problem. I will ask to see a specialist in LS and see where that gets me. I still can't understand why they are not giving me steroid cream yet. Were you diagnosed by a biopsy?

I was diagnosed by biopsy 16 years ago after much 'blah blah blah' by ill informed medics who at the time I remember them making me feel about five years old with a minor dismissive ailment !!! 

not any more.   We know our bodies and we know what having this condition means when you first hear the words No cure  Can only be managed  it is shocking. 

 Even all those years ago, and I have to say many of them were in remission. Treatment from GPs and 'specialists' hasn't changed at all. 

It is the Women who have LS who do the trials and errors bless us all 

Mind you I have to say taking a 'selfie' of my ailing vulva has reached a whole new level of knowledge 😳🤣

Today is a good day as yesterday I was advised to change from Dermovate to Betnovate to use on the firey furnace known as my Vagina 🔥 O M G it was immediate relief so long may it continue 

L??VE

Thank you Sedg for your reply. 16 years?! Poor you. And it is pitiful that treatments havent changed in that time. I have the feeling that gynaes and GPs try to make light of this disease because they have no positive answers to give you, but I am the sort of person who needs all the information I can get and I know what you mean about medics making you feel about 5 years old. It is patronising.

I now realize why I have a constant backache.  I'm tilting myself to one side, trying not to sit on my vulva!

I am waiting to see a GYN doc, to get a biopsy done, before starting on a steroid down there for the rest of my life.  The GYN I saw a few weeks ago, told me I have LS, but said she didn't need a biopsy.  She could "tell by looking".  Well - I want a biopsy!  So that after this thing is a little better, I still have proof. 

I was also seen by my GP and a Gynae, I kept going back saying I was in acute discomfort and was eventually dismissed as a hypochondriac. I waited until we'd moved house to a new area a year later and went to my new doctor. Her first response was 'my god, how did you get into this state!' and put me on steroids. I then didn't get on with her either because i insisted on tests (having been on this site) for thyroid, menopause (hadn't had any periods for two years), and vitamin D, and also wanted a referral to the Vulval dermatology clinic. (There is one in Bristol if you can get there, at St Michaels, the main condition they treat is LS - with steroid). My GP got offended that I was questioning rather than accepting her authority, and didn't want to refer me to a specialist, she wanted to treat me herself, but didn't have the expertise. I did get to the clinic and they gave me different advice about it being Ok to use the steroid long term. I found another woman doctor in the practice who was kinder, but she left after a few months.

I moved to a new GP practice and now have a FABULOUS doctor who is even interested in following up on the borax that I am using, so she can suggest it to her other patients with LS if she is impressed with how it works on me.

So I got there in the end. You will too

Good Luck

Thank you for your encouragement Bridge of Sighs. I too have been made to feel a little hypochondriacal as I insisted on being referred to the gynae when my GP had said go away for 6 months, then he totally supported what my GP had said (i.e.: looks like LS) and gave me no further information. I am going back to see GP after my holiday to see if I can insist on starting steroid treatment as the more I read the more I think this disease needs to be treated immediately it's suspected. I just hope I can arouse some empathy in her - it is awful how many women on this forum seem to have had similar dismissive

attitudes from GPs as if fusing, itching and lumps are nothing to worry about. 

Thanks Gillian. Yes I have told them about the itch for all these years. I have amytriptiline to try to 'tune out the message' and it helps a little. I also use oestrogen cream and wash with epaderm ointment. Those advisories were given to me by my GP some time ago.