Posted , 36 users are following.
Most posts here seem to be from America. Is there anyone out there getting treatment in the U.K.? If so where and what? Are there any specialists?
1 like, 81 replies
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Blueplum LSpatient
Posted
Hya hun I’m in the Uk London sides, genuinely they have no information you have to ask your gp to refer you as they have no knowledge and are completely useless.
I’m loosing my labia minora as well, when you get diagnosed etc they don’t tell you this would happen. Until one day you look down there & freak out!!!!
We should organize a possibly what’s app chat group or meets up in Uk that would been nice so people to discuss with others who are in the same situation.
Guest Blueplum
Posted
Thanks I have no one to talk to I moved in with my partner and he doesn't have many friends I know no one here now I live with him.not sure how to privately message you
Bridge_of_Sighs Guest
Posted
Alison, if you are near Bristol, I keep trying to get a support group going, but never quite reach critical mass. Would you be interested? There's two of us at the moment. Anyone else?
Just to say that in the school holidays I'm on here sporadically, but I will reply - it's just not going to be immediately.
Bridge
sue162 Blueplum
Posted
sue162 Bridge_of_Sighs
Posted
Guest Bridge_of_Sighs
Posted
Hello Bridge! Did you manage to get a support group up and running?
Bridge_of_Sighs Guest
Posted
Yes, three of us met up in November and there were four of us who met up recently. Are you in the area? want to join? PM me if so. To anyone else, I'd recommend trying to meet up with people in your area. Nice to not feel so alone with it.
Guest Bridge_of_Sighs
Posted
I don't know how to PM!! I am in Bath ..... whereabouts in Bristol do you meet?
Bridge_of_Sighs Guest
Posted
Hi Marian
Just click the little envelope under my name. I've sent you a message.
Bridge
sandrapopcorn.1 Bridge_of_Sighs
Posted
I live in Bristol and would be interested in the support group.
Bridge_of_Sighs sandrapopcorn.1
Posted
Hi there, I've sent you a direct message. Sorry for the delay in getting back to you. Bridge
michele2363 Blueplum
Posted
ive just been diagnosed but have had the symptoms for as king as i can remember! Ive got an appointment for a biopsy, anyone had one?
im in Hertfordshire, would definitely like to meet or houn a whats app group x
frankie68 LSpatient
Posted
Hi, I am on the Wirral , Merseyside. I was diagnosed a year ago by Google! Looked up my symptoms, itching and white patches. G P confirmed. I asked for referral to Vulval clinic in Liverpool. Saw consultant there a few months ago. I am part way through the Dermovate regime. Apparently the active area was between vag and anus. Small fissures. He said vulva was ok. I have fusing and area around clitoris looks different and sensitivity not the same. I have a follow up appointment in November. Wish there was a drop in clinic to go to .
Anyone out there in my neck of the woods?
Vero84 LSpatient
Posted
Hi ladies, I just wanted to share places in the UK that might be of interest. I will share my own history of LS another time but as a fellow sufferer I have been researching this condition a lot.
Perrines Naturals Creme Complete has been used by many successfully to help control the symptoms.
The Regenerative Clinic have an interesting new treatment that seem to help LS patients using your own regenerative cells.
Dr Nicola Smith is a vulvar dermatology specialist at the London Skin & Hair clinic who has special interest in LS.
Prof Anthony Mundy is a urologist in London who has 35 years experience in the field and a special interest in LS and related surgeries.
I realise they are all private and in London, but unfortunately I don't put much faith in NHS when it comes to this.
I self diagnosed myself as since I remember I've had fused skin over my clitoris and no minor labias. I think I had LS as a child that mostly went away at puberty but I was left with the scars. I would love to have it fixed as i have to be very careful during sex not to tear, but a bit scared of it too. If anyone put there had such surgery and can comment I would really appreciate it.
Recently I experienced some itchiness and i am terrified it might come back. I am 35 and always suffered from yeast infections and UTIs periodically though natural therapies helped a lot. Sometimes I wonder my LS maybe hasn't gone away just have very little symptoms at the moment. I know I should feel lucky for now, but I'm just so afraid of what might happen. I am going through an itchy period and I'm so depressed because all i can think about is, is it LS? I have just joined this group to share the above findings, I know how alone and miserable this can make you feel. All the best to everyone X
Bridge_of_Sighs LSpatient
Posted
Hi Vero
Thanks for your list, that's really great for the rest of us to have as a resource.
Are you anywhere near Bristol? We have a support group and meet up every few months. We can't solve anything but it's nice to share and lean on each other. Please get in tough if that is any use to you.
Bridge