I was lucky enough to find a female GP who diagnosed me straight away when I was 60. she isn't that knowledgeable about the treatments though, (just bog standard 5% steroid cream.) I have had to find that out for myself. I have found vaginal estrogen once in remision is a huge help. I had done research first and heard of LS but I discounted it and thought I had herpes. I was so embarrassed about having to go and see a doctor as I hadn't been to a dr for a long time and deffinitely did not want to see a male dr. Thank god for RUclips. Claire is a brilliant advocate.
It is a dreadful condition! After having surgery that was supposed to cure this condition from a so-called "expert". After being surgically thrown into menopause in early 20's without benefit of further estrogen, having multiple major abdominal surgeries, and in later life bladder control issues, this on-going condition is HORRIFIC! After seeing FIVE different "doctors" and 6 YEARS later, I am throughly at my wits end. It plays havoc on on everyday life and sex life is nil!! I also have lichen planus from time to time. Thank you so very much for this video and your truth on this subject, as doctors MUST be educated as to this painful, disfiguring, life altering, disease.
Thank you, Claire, for sharing your incredible story. I wish there was more help out there and GYNs who were more educated and research in this area. This IS the most honest video concerning VS. I hope you are well and bless you for your mission! After hearing this, you need to education doctors!!
Thanks for sharing Clare! This makes me very sad! Thank you so much for the work you do! 🥰I have just started the LS struggle after 4 or so years of mis-diagnosed issues.
Wish I had seen this before my mom died from this cancer after death I know what caused it on like you watching this video making me relive the moment also the people affected by this cancer even though not having the cancer but people do need advocacy out there like myself I always feel like there was more I could do before she passed so I find myself researching videos in grief 😔 ☹️ and sadness
Thank you for your story. I've had lichen sclerosis for approximately 20 years. It's awful. Nothing really works. Lots of architectural changes. So frustrating 😢
I feel unwell when I have a flare-up, which seems to be all the time with little respite. I have just had a biopsy taken from my vulva. I have had this condition for a number of years, and it was diagnosed 2 years ago. I am 70yrs old.
I have this issue I went yesterday after 4 year's of waiting because the back log and the doctors looked and said it's a very bad case and I have to wait 6 weeks now for a Biopsy 😢 but I'm in pain all the time, they told me to use vasaline to help, how can I joined your group please,
I've had LS for several years now. The burning and intense itching is unbearable. I've since noticed several lumps are lumps and some of them have now started burning. Nobody has followed it up in the 10/11 years since it was diagnosed. I had an hysterectomy in the 80s. Not sure what to do
I was lucky enough to find a female GP who diagnosed me straight away when I was 60. she isn't that knowledgeable about the treatments though, (just bog standard 5% steroid cream.) I have had to find that out for myself. I have found vaginal estrogen once in remision is a huge help. I had done research first and heard of LS but I discounted it and thought I had herpes. I was so embarrassed about having to go and see a doctor as I hadn't been to a dr for a long time and deffinitely did not want to see a male dr. Thank god for RUclips. Claire is a brilliant advocate.
Thank you for sharing such a private and painful experience. Your courage gives me strength.
It is a dreadful condition! After having surgery that was supposed to cure this condition from a so-called "expert". After being surgically thrown into menopause in early 20's without benefit of further estrogen, having multiple major abdominal surgeries, and in later life bladder control issues, this on-going condition is HORRIFIC! After seeing FIVE different "doctors" and 6 YEARS later, I am throughly at my wits end. It plays havoc on on everyday life and sex life is nil!! I also have lichen planus from time to time.
Thank you so very much for this video and your truth on this subject, as doctors MUST be educated as to this painful, disfiguring, life altering, disease.
Bless you so brave xx
Thank you, Claire, for sharing your incredible story. I wish there was more help out there and GYNs who were more educated and research in this area. This IS the most honest video concerning VS. I hope you are well and bless you for your mission! After hearing this, you need to education doctors!!
Thanks for sharing Clare! This makes me very sad! Thank you so much for the work you do! 🥰I have just started the LS struggle after 4 or so years of mis-diagnosed issues.
Wish I had seen this before my mom died from this cancer after death I know what caused it on like you watching this video making me relive the moment also the people affected by this cancer even though not having the cancer but people do need advocacy out there like myself I always feel like there was more I could do before she passed so I find myself researching videos in grief 😔 ☹️ and sadness
Thank you for your story. I've had lichen sclerosis for approximately 20 years. It's awful. Nothing really works. Lots of architectural changes. So frustrating 😢
Thank for sharing 🙏
What a wonderful lady to be so open and informative. Blessings x
Thank you so much for sharing
when did doctors figure LS out for women. 30 yrs ago, 5 drs did not provide any information following a vulvar surgery. Glad things have progressed
Thank you so much, that information is very helpful
I feel unwell when I have a flare-up, which seems to be all the time with little respite. I have just had a biopsy taken from my vulva. I have had this condition for a number of years, and it was diagnosed 2 years ago. I am 70yrs old.
I have this issue I went yesterday after 4 year's of waiting because the back log and the doctors looked and said it's a very bad case and I have to wait 6 weeks now for a Biopsy 😢 but I'm in pain all the time, they told me to use vasaline to help, how can I joined your group please,
I've had LS for several years now. The burning and intense itching is unbearable. I've since noticed several lumps are lumps and some of them have now started burning. Nobody has followed it up in the 10/11 years since it was diagnosed. I had an hysterectomy in the 80s. Not sure what to do
Please go back to your GP, really push if you need to and ask them to fast track you. x
@SisterSeventies I'll try but it's not easy to get even a telephone appointment
How long did you discover it
If a Dr doesn’t know body parts he NEVER should graduate medical school. This is absurd
Excuse me, Did you have a vulvectomy?
I’ve had this for years it’s awful
You poor woman it should have been caught straight away by the doctors mine knew straight away