I was diagnosed in 2020 with lichen sclerosus after months of severe itching particularly at night time,at the time it was during lockdown I was given a print out detailing my treatment plan and what lichen sclerosus was with a caution of it has a small chance of turning cancerous. I found treatment helped and just ordered repeat prescriptions of dermovate and QV wash and emollient and basically got on with life. In last year or so I started feeling sore and swollen around vulva area and naively I never even thought to have a proper look down there I just applied cream untill it eased and forgot about it again.I did ask gp about topical oestrogen as I felt uncomfortable down there and they said I had enough oestrogen through hrt ?? I am 54 and assume post menopausal now. My mirena coil needed changed in March this year and I chose to have it removed and so asked women’s health gp to have a check of my lichen sclerosus when she was removing coil and she then prescribed me topical oestrogen to apply alternatively with dermovate with a follow up 8 weeks later.When I returned she wasn’t happy how I was healing and upped my treatment to dermovate/oestrogen alternative nights for another 4 weeks. She showed me the area of concern to apply creams to and I was actually shocked that I wouldn’t have known it was there. I have a thickened area of white in the inside of my labia near vagina which weeps clear liquid sometimes and also adjacent to other side of this I think proper term is labia minora is a small ‘cut’ which has not healed with treatment and it bleeds sometimes. Sorry if it’s a long message I think I’m just petrified that’s it something serious and being where it is it’s not an easy topic to bring up in conversations with other people as other cancers seem more openly spoken about . I am so glad I asked doctor to check as I dread to think how long it would have went before I got it checked. I was referred for urgent gynecology on June 7th and my appointment is for 23rd I was diagnosed in 2020 with lichen sclerosus after months of severe itching particularly at night time,at the time it was during lockdown I was given a print out detailing my treatment plan and what lichen sclerosus was with a caution of it has a small chance of turning cancerous. I found treatment helped and just ordered repeat prescriptions of dermovate and QV wash and emollient and basically got on with life. In last year or so I started feeling sore and swollen around vulva area and naively I never even thought to have a proper look down there I just applied cream untill it eased and forgot about it again.I did ask gp about topical oestrogen as I felt uncomfortable down there and they said I had enough oestrogen through hrt ?? I am 54 and assume post menopausal now. My mirena coil needed changed in March this year and I chose to have it removed and so asked women’s health gp to have a check of my lichen sclerosus when she was removing coil and she then prescribed me topical oestrogen to apply alternatively with dermovate with a follow up 8 weeks later.When I returned she wasn’t happy how I was healing and upped my treatment to dermovate/oestrogen alternative nights for another 4 weeks. She showed me the area of concern to apply creams to and I was actually shocked that I wouldn’t have known it was there. I have a thickened area of white in the inside of my labia near vagina which weeps clear liquid sometimes and also adjacent to other side of this I think proper term is labia minora is a small ‘cut’ which has not healed with treatment and it bleeds sometimes. Sorry if it’s a long message I think I’m just petrified that’s it something serious and being where it is it’s not an easy topic to bring up in conversations with other people as other cancers seem more openly spoken about . I am so glad I asked doctor to check as I dread to think how long it would have went before I got it checked.I was referred for urgent gynecology appointment on 7th June and have an appointment for 23rd July.
Hi 69fr and a very warm welcome to the Community but sorry to hear about your ongoing challenges.
Navigating a diagnosis journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot.
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Valva cancer support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link below…….
…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Do get back to me if you need further help navigating the community.
