Support Groups
Awareness Pages
This website has been created to help sufferers of Lichen Sclerosus and those who believe they may have it. We are also hoping this website will help us to raise awareness for this condition.
Here you will find information about Lichen sclerosus and what it is, real symptoms, diagnosis, treatments, risks of Vulval Cancer aswell as awareness videos and thoughts of sufferers.
Above you will find links to our support groups and a link to our awareness pages.
Here I will also post news about any campaigns we are doing and how you can get involved.
Here you will find information about Lichen sclerosus and what it is, real symptoms, diagnosis, treatments, risks of Vulval Cancer aswell as awareness videos and thoughts of sufferers.
Above you will find links to our support groups and a link to our awareness pages.
Here I will also post news about any campaigns we are doing and how you can get involved.
THIS WEBSITE IS RUN BY EMMA NORMAN AND CLARE BAUMHAUER. THIS IS OUR STORY AND WHY WE RAISE AWARENESS.
Emma Norman
Hi, My name is Emma Norman and I have Lichen Sclerosus.
I was diagnosed at 22 years of age but my symptoms started during child hood (my first recollection was being 5 yrs old and screaming in a classroom)
I stayed away from boyfriends and sexual intercourse because inside I knew something wasn't right but I was too embarrassed and ashamed to go to the Dr. I figured he would just tell me it was in my head or something similar.
I decided to go see my Dr when I was 22 years old following a discussion with a boyfriend at the time. I had tried to have intercourse but was never able to have penetration due to the excrutiating pain.
He had a look at my Vulva and decided to send me for a smear. This was when I heard the sole shattering words from the nurse "were you abused as a child? I can't even get the smallest speculum in as your too small"
I went home and broke my heart, sobbing uncontrollably. I plucked up the courage that night to get a mirror and look at my Vulva. I was bruised purple, red, white, crinkly, had lost my labia minora where it had fused to my labia majora, my clitoris was buried under skin, I was itching and burning like I was on fire. It was the most horrific sight I had ever seen.
My Dr referred me to a gynaecologist at my local hospital where I met the most amazing consultant. He biopsied me and within a couple of weeks I had my diagnosis, Lichen Sclerosus. He didn't know enough about it to treat me and so I was referred to a specialist at a well known London hospital. This is where things took a turn for the worse.
The ladies treating me (one with large pointed false nails whilst doing internal checks) decided to admit me for 3 days and start a dialator treatment to widen the opening of my Vagina. Now Dialators come in packs of 8 sizes. Size 1 being as small as a little finger - size 8 being as big as an 'average' penis. At no point was I in control of any of these dialators being inserted into my Vagina!! On the first day she started with size 1, then size 2, then size 3. I was bleeding and in agony and crying. I was burning trying to urinate and it took me a good hour at least to urinate once. On day 2 she used size 3, size 4 and went to try size 5 with me begging for mercy. This was when I contacted my consultant back home and told him what was happening. To say I was being discharged with an apology within an hour would be pretty accurate. In fact he used my ordeal with all female patients using dialators to educate and ensure it was never repeated again.
From there on I was referred to a Gynae oncologist who knew very little about Lichen Sclerosus but was very experimental. I had 3 clitoral hood separations, which never lasted long as the skin always grew back over within a few months, 2 skin graphs with a plastic surgeon which I have to say lasted years so was a better treatment long term aswell as countless biopsies for pre cancer cells. I was put on Dermovate from the first appointment with her and have used it ever since (approximately 12 years now).
I must point out that there were some very dark times during the early stages of diagnosis. Times when I felt like a freak, like I wasnt good enough, worthless, suicidal, in a deep depression and that I would never be able to have a child of my own due to this incurable condition.
Flash forward to 5.5 years ago when I welcomed my beautiful daughter into the world via c section and things couldn't be more different now.
I won't lie, sex is unbearably painful still so I still avoid it. But those thoughts and feelings of hopelessness, of not feeling worthy or not wanting to live have gone.
Now I have turned those feelings into passion. A passion to make a difference to many women, Men and children who have Lichen Sclerosus, the ones who have been diagnosed but aren't getting the help they need and the ones who are still being mistreated for Thrush time and time again, the ones who don't yet know they have Lichen Sclerosus and need immediate treatment starting.
That is why I run support groups for women and men with Lichen Sclerosus, it's why I have started the awareness website, Facebook, Twitter and Instagram pages. I want to spread the word and get the symptoms out to as many people as I possibly can so they can get the diagnosis they need. I want medical professionals to have training on Lichen Sclerosus and Vulva Cancer. I want Leaflets in all surgeries and hospitals. I want children to be taught about Lichen Sclerosus in Sex Education lessons at school. I want more research and better treatments. To have stem cell treatments available on the NHS. These are my goals and i hope you will join me in making these things happen.
I was diagnosed at 22 years of age but my symptoms started during child hood (my first recollection was being 5 yrs old and screaming in a classroom)
I stayed away from boyfriends and sexual intercourse because inside I knew something wasn't right but I was too embarrassed and ashamed to go to the Dr. I figured he would just tell me it was in my head or something similar.
I decided to go see my Dr when I was 22 years old following a discussion with a boyfriend at the time. I had tried to have intercourse but was never able to have penetration due to the excrutiating pain.
He had a look at my Vulva and decided to send me for a smear. This was when I heard the sole shattering words from the nurse "were you abused as a child? I can't even get the smallest speculum in as your too small"
I went home and broke my heart, sobbing uncontrollably. I plucked up the courage that night to get a mirror and look at my Vulva. I was bruised purple, red, white, crinkly, had lost my labia minora where it had fused to my labia majora, my clitoris was buried under skin, I was itching and burning like I was on fire. It was the most horrific sight I had ever seen.
My Dr referred me to a gynaecologist at my local hospital where I met the most amazing consultant. He biopsied me and within a couple of weeks I had my diagnosis, Lichen Sclerosus. He didn't know enough about it to treat me and so I was referred to a specialist at a well known London hospital. This is where things took a turn for the worse.
The ladies treating me (one with large pointed false nails whilst doing internal checks) decided to admit me for 3 days and start a dialator treatment to widen the opening of my Vagina. Now Dialators come in packs of 8 sizes. Size 1 being as small as a little finger - size 8 being as big as an 'average' penis. At no point was I in control of any of these dialators being inserted into my Vagina!! On the first day she started with size 1, then size 2, then size 3. I was bleeding and in agony and crying. I was burning trying to urinate and it took me a good hour at least to urinate once. On day 2 she used size 3, size 4 and went to try size 5 with me begging for mercy. This was when I contacted my consultant back home and told him what was happening. To say I was being discharged with an apology within an hour would be pretty accurate. In fact he used my ordeal with all female patients using dialators to educate and ensure it was never repeated again.
From there on I was referred to a Gynae oncologist who knew very little about Lichen Sclerosus but was very experimental. I had 3 clitoral hood separations, which never lasted long as the skin always grew back over within a few months, 2 skin graphs with a plastic surgeon which I have to say lasted years so was a better treatment long term aswell as countless biopsies for pre cancer cells. I was put on Dermovate from the first appointment with her and have used it ever since (approximately 12 years now).
I must point out that there were some very dark times during the early stages of diagnosis. Times when I felt like a freak, like I wasnt good enough, worthless, suicidal, in a deep depression and that I would never be able to have a child of my own due to this incurable condition.
Flash forward to 5.5 years ago when I welcomed my beautiful daughter into the world via c section and things couldn't be more different now.
I won't lie, sex is unbearably painful still so I still avoid it. But those thoughts and feelings of hopelessness, of not feeling worthy or not wanting to live have gone.
Now I have turned those feelings into passion. A passion to make a difference to many women, Men and children who have Lichen Sclerosus, the ones who have been diagnosed but aren't getting the help they need and the ones who are still being mistreated for Thrush time and time again, the ones who don't yet know they have Lichen Sclerosus and need immediate treatment starting.
That is why I run support groups for women and men with Lichen Sclerosus, it's why I have started the awareness website, Facebook, Twitter and Instagram pages. I want to spread the word and get the symptoms out to as many people as I possibly can so they can get the diagnosis they need. I want medical professionals to have training on Lichen Sclerosus and Vulva Cancer. I want Leaflets in all surgeries and hospitals. I want children to be taught about Lichen Sclerosus in Sex Education lessons at school. I want more research and better treatments. To have stem cell treatments available on the NHS. These are my goals and i hope you will join me in making these things happen.
Clare Baumhauer
In March 2016 I was told I could have Vulval Cancer. I walked out the surgery to my husband who was waiting in the car with my son, I was trying really hard not to cry. I needed to get home.
I remember feeling sick and holding back the tears so my son didn’t ask what was wrong, he is only 11 and has autism so wouldn’t understand, hell I didn’t understand! I had never heard of vulval cancer , I didn’t even know the outside area was called your Vulva.
I got home and then told my husband what the doctor said, he looked shocked.
I had to wait for a call for an appointment to see a gynaecologist and have a biopsy. I was told it should be within 2 weeks.
I was sure it was cancer and as I had the symptoms and ulcer nearly a year so thought that it must of spread! I told myself I had weeks maybe months to live.
I came to terms with death quite easy, until I thought about my family, I wouldn’t see my son and daughter grow up, get married or have kids. Help them in life. I then thought back to how I felt when I found out my mum had cancer and what it was like when she died. I realised how scared she must of been and how I felt when I was told.
I didn’t want my kids to go through that.
The next few weeks were a blur! I decided to sort all my stuff out so my daughter and husband didn’t have to.
I packed up most of my stuff in my bedroom and sorted through all my clothes. My poor husband made about 4 trips to the tip.
I took my daughter shopping and brought her lots of things, I nearly brought a couple things for myself then thought what’s the point I won’t be here to use them.
I had my biopsy which was a day before my birthday. Only my husband knew, which was hard to act normal around others. I thought that would be my last birthday.
I arranged my funeral in my head, found flowers and a coffin I liked and saved them on my phone.
I would go for a bath most nights and just sit and cry as that was the place I didn’t hold it all in.
I got my biopsy results of Lichen Sclerosus (again I had never heard that condition before either) and squamous cell carcinoma (Vulva cancer)
I then had to have PET scans and MRI and wait for the results to see if it had spread. I had convinced myself it had and was having symptoms of bladder and bowel cancer.
The next couple weeks seemed to go so slow but finally got the results that it hadn’t spread and surgery was in 2 weeks time to remove the tumour and sentinel nodes biopsy to test if it had gone to my lymph nodes as scans were unclear in seeing cancer in nodes.
What a relief! It hadn’t spread and was stage 1b. Then the symptoms I was having all went! Surprising what you can imagine and tricks your body.
I had a plan of treatment and was feeling positive and so much better. I now told my 16 year old daughter which was the hardest thing I’ve had to do! She had already lost her nan to cancer.
I decided not to tell my son as he wouldn’t understand and as having autism has no empathy.
I then started to tell the rest of my family and friends.
I wasn’t scared or worried about the Operation just wanted it over.
Surgery went ok but from my scan to operation the tumour grew aggressively so was too close to my bum to get clear margins so had to have radiotherapy to make sure. The lymph node biopsy came back clear.
I stayed in hospital for 5 days and once home I had to lay in bed mostly for 4 weeks as sitting was to painful especially as all my stitches came out so took longer to heal but it was ok.
Once I had healed enough I started 5 weeks of radiotherapy (August 2016) which wasn’t easy. I was tired all the time and had bowel problems and my skin on the inside of my groins started to go red and hot then the skin started to come off and weep. I found walking painful and the journey up to London on the train during the hot weather extremely hard. But I did it!
After a few weeks I went back to work and tried to get back to normal but my scan showed a node was still swollen from a previous scan so they decided in December 2016 to remove more nodes to check. They removed 6 lymph nodes from my left groin and 3 came back cancerous. I was devastated again! It had already been 9 months and I was going to have to have more radiation on both left and right nodes plus my abdomen to make sure.
I spent New Year’s Eve weekend in hospital because I got cellulitis while on holiday and had 2 more Operations on my groin so spent most of January 2017 in hospital because I had many problems getting the infection under control and had to have the groin drain put back in. I then started my second lot of radiotherapy in March 2017.
33 sessions over 8 weeks. I knew what to expect this time and as it was higher up walking this time was much easier. Still having bowel problems and so tired all the time. By the time I had my next scan it had been 16 months of scans and treatment and finally in July 2017 I was given the all clear! In remission, cancer free.
It had spread to my lymph nodes so I beat stage 3 vulval cancer! Yes I was happy and relieved but I had been on autopilot the last 16 months so now it was over? I can get back to normal? No, now I have to deal with the side affects of the surgery’s and the radiation. It put me straight into the menopause, I then had lymphedema confirmed in my legs, pelvis and abdomen. I have nerve damage and pain in my left groin , still have bowel problems and is tired all the time But yes I beat cancer! For now!
I still have Lichen Sclerosus which is the skin condition that caused my cancer and was left untreated for many years as seems I’ve had since a child but numerous times was missed and misdiagnosed as cystitis and thrush multiple times over the years.
I had swobs and blood tests but Lichen Sclerosus was never mentioned.
If a doctor or nurse had recognised the symptoms I would have been diagnosed much earlier and been using the steroid, so I might not have got cancer as there is only a 5% chance of Lichen Sclerosus turning to cancer if the skin is left to thicken, and the cancer would not of had time to spread to stage 3 Cancer. I would not have had to have radiation which caused all my life changing side affects. If I had known about LS and Vulval cancer I would have gone back to the doctors and not given up going.
If I hadn’t seen all the adverts for thrush and vagisil for vaginal itching and thinking this must be normal.
If the nurses that did my smear tests had been trained in LS and vulval cancer.
If midwives had also been trained in LS and Vulval cancer then it would have been diagnosed on one of the multiple times I’ve seen a nurse or midwife.
It’s now been 1 year since I was given the all clear but life hasn’t gone back to normal it never will. I have to find my new normal and accept every new sore or red area or pain that it Could be back! I worry that other symptoms are a different cancer.
Worry every scan they find something. Feels like a ticking time bomb. Worry that my family will get cancer too. The depression and bad days.
I still go for a bath and have a good cry.
The guilt you have for surviving and others don’t.
The anger of so little awareness of both conditions.
Why the medical profession don’t know or misdiagnose.
Just because it is commonly in the older women they dismiss it if you're younger.
So now I’m trying to raise awareness as much as I can especially as Vulval cancer doesn’t have any charity’s of there own or a Awareness day/week of its own or official ribbon or any celebrities to help or have tea party’s.
More awareness and research is needed in LS, VIN ,Vulval and Vaginal cancer.
I don’t want anyone to go through what I have and am still going through.
Nurses and GP’s need training in All these conditions especially those that do smear tests.
Vulva cancer needs it’s own awareness week to make any impact.
More Research is needed
I like to help who ever I can, whether is tips, support or just someone to talk to who is going through the same as you.
We need to use the word Vulva more!
I remember feeling sick and holding back the tears so my son didn’t ask what was wrong, he is only 11 and has autism so wouldn’t understand, hell I didn’t understand! I had never heard of vulval cancer , I didn’t even know the outside area was called your Vulva.
I got home and then told my husband what the doctor said, he looked shocked.
I had to wait for a call for an appointment to see a gynaecologist and have a biopsy. I was told it should be within 2 weeks.
I was sure it was cancer and as I had the symptoms and ulcer nearly a year so thought that it must of spread! I told myself I had weeks maybe months to live.
I came to terms with death quite easy, until I thought about my family, I wouldn’t see my son and daughter grow up, get married or have kids. Help them in life. I then thought back to how I felt when I found out my mum had cancer and what it was like when she died. I realised how scared she must of been and how I felt when I was told.
I didn’t want my kids to go through that.
The next few weeks were a blur! I decided to sort all my stuff out so my daughter and husband didn’t have to.
I packed up most of my stuff in my bedroom and sorted through all my clothes. My poor husband made about 4 trips to the tip.
I took my daughter shopping and brought her lots of things, I nearly brought a couple things for myself then thought what’s the point I won’t be here to use them.
I had my biopsy which was a day before my birthday. Only my husband knew, which was hard to act normal around others. I thought that would be my last birthday.
I arranged my funeral in my head, found flowers and a coffin I liked and saved them on my phone.
I would go for a bath most nights and just sit and cry as that was the place I didn’t hold it all in.
I got my biopsy results of Lichen Sclerosus (again I had never heard that condition before either) and squamous cell carcinoma (Vulva cancer)
I then had to have PET scans and MRI and wait for the results to see if it had spread. I had convinced myself it had and was having symptoms of bladder and bowel cancer.
The next couple weeks seemed to go so slow but finally got the results that it hadn’t spread and surgery was in 2 weeks time to remove the tumour and sentinel nodes biopsy to test if it had gone to my lymph nodes as scans were unclear in seeing cancer in nodes.
What a relief! It hadn’t spread and was stage 1b. Then the symptoms I was having all went! Surprising what you can imagine and tricks your body.
I had a plan of treatment and was feeling positive and so much better. I now told my 16 year old daughter which was the hardest thing I’ve had to do! She had already lost her nan to cancer.
I decided not to tell my son as he wouldn’t understand and as having autism has no empathy.
I then started to tell the rest of my family and friends.
I wasn’t scared or worried about the Operation just wanted it over.
Surgery went ok but from my scan to operation the tumour grew aggressively so was too close to my bum to get clear margins so had to have radiotherapy to make sure. The lymph node biopsy came back clear.
I stayed in hospital for 5 days and once home I had to lay in bed mostly for 4 weeks as sitting was to painful especially as all my stitches came out so took longer to heal but it was ok.
Once I had healed enough I started 5 weeks of radiotherapy (August 2016) which wasn’t easy. I was tired all the time and had bowel problems and my skin on the inside of my groins started to go red and hot then the skin started to come off and weep. I found walking painful and the journey up to London on the train during the hot weather extremely hard. But I did it!
After a few weeks I went back to work and tried to get back to normal but my scan showed a node was still swollen from a previous scan so they decided in December 2016 to remove more nodes to check. They removed 6 lymph nodes from my left groin and 3 came back cancerous. I was devastated again! It had already been 9 months and I was going to have to have more radiation on both left and right nodes plus my abdomen to make sure.
I spent New Year’s Eve weekend in hospital because I got cellulitis while on holiday and had 2 more Operations on my groin so spent most of January 2017 in hospital because I had many problems getting the infection under control and had to have the groin drain put back in. I then started my second lot of radiotherapy in March 2017.
33 sessions over 8 weeks. I knew what to expect this time and as it was higher up walking this time was much easier. Still having bowel problems and so tired all the time. By the time I had my next scan it had been 16 months of scans and treatment and finally in July 2017 I was given the all clear! In remission, cancer free.
It had spread to my lymph nodes so I beat stage 3 vulval cancer! Yes I was happy and relieved but I had been on autopilot the last 16 months so now it was over? I can get back to normal? No, now I have to deal with the side affects of the surgery’s and the radiation. It put me straight into the menopause, I then had lymphedema confirmed in my legs, pelvis and abdomen. I have nerve damage and pain in my left groin , still have bowel problems and is tired all the time But yes I beat cancer! For now!
I still have Lichen Sclerosus which is the skin condition that caused my cancer and was left untreated for many years as seems I’ve had since a child but numerous times was missed and misdiagnosed as cystitis and thrush multiple times over the years.
I had swobs and blood tests but Lichen Sclerosus was never mentioned.
If a doctor or nurse had recognised the symptoms I would have been diagnosed much earlier and been using the steroid, so I might not have got cancer as there is only a 5% chance of Lichen Sclerosus turning to cancer if the skin is left to thicken, and the cancer would not of had time to spread to stage 3 Cancer. I would not have had to have radiation which caused all my life changing side affects. If I had known about LS and Vulval cancer I would have gone back to the doctors and not given up going.
If I hadn’t seen all the adverts for thrush and vagisil for vaginal itching and thinking this must be normal.
If the nurses that did my smear tests had been trained in LS and vulval cancer.
If midwives had also been trained in LS and Vulval cancer then it would have been diagnosed on one of the multiple times I’ve seen a nurse or midwife.
It’s now been 1 year since I was given the all clear but life hasn’t gone back to normal it never will. I have to find my new normal and accept every new sore or red area or pain that it Could be back! I worry that other symptoms are a different cancer.
Worry every scan they find something. Feels like a ticking time bomb. Worry that my family will get cancer too. The depression and bad days.
I still go for a bath and have a good cry.
The guilt you have for surviving and others don’t.
The anger of so little awareness of both conditions.
Why the medical profession don’t know or misdiagnose.
Just because it is commonly in the older women they dismiss it if you're younger.
So now I’m trying to raise awareness as much as I can especially as Vulval cancer doesn’t have any charity’s of there own or a Awareness day/week of its own or official ribbon or any celebrities to help or have tea party’s.
More awareness and research is needed in LS, VIN ,Vulval and Vaginal cancer.
I don’t want anyone to go through what I have and am still going through.
Nurses and GP’s need training in All these conditions especially those that do smear tests.
Vulva cancer needs it’s own awareness week to make any impact.
More Research is needed
I like to help who ever I can, whether is tips, support or just someone to talk to who is going through the same as you.
We need to use the word Vulva more!
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