You probably don't think the two would go together but they do. I was in my early thirties trying for a baby when I was diagnosed with a premature menopause. It's a diagnosis you never think will happen to you when I looked around at all my friends they were all married and having children whilst I couldn't even get off the starting block. Due to a rare complication we decided to end our fertility journey and find a new path in life, I changed jobs, we got three dogs and I learnt to live with the menopause and feeling old before my time.

My first episode of vaginal atrophy happened out of the blue over the Christmas holiday, I started to get burning and an itching sensation down below. At first I thought it was thrush and I went and got some caneston from the chemist and waited for it to take effect. It didn't! After a few days I was desperate and visited a Dr at the walk in centre who asked if I was sexually active and if it could be an STI or infection, I didn't get much help apart from the suggestion to use sudocream! I went home feeling down hearted and continued using ice packs for the next few days wondering if I would ever feel normal again. How would I be intimate with my husband again when I could barely tolerate being examined, how would I go back to work without waddling or struggling to sit down!

I only noticed an improvement when I changed the dose of my HRT and this was when I had that light bulb moment that it was vaginal atrophy not thrush or a urine infection. Here I was a women's health nurse who hadn't spotted my own symptoms I know they say that nurses make the worst patients but vaginal atrophy hadn't even been on my radar. I thought to myself if it could happen to me with all the training I had as a nurse how many other women are in the same situation suffering at home with an icepack.

It was hard enough talking about menopause in your thirties but talking about your vagina as well! Everyday at work I would talk to ladies about women's health and all sorts of personal experiences but once I took my uniform off it was like I was another person . Something had to change and I decided to make it my mission to talk and educate to women on all aspects of the menopause. I went back to university to study a post graduate qualification in reproduction and recently took up part time work giving talks on women's health and the menopause. After I had done a few talks I thought to myself I am going to be brave and mention the V word I don't want to lecture, just give women the opportunity to learn and talk about their experiences. After all I have been that girl sat on the icepack.

It's tempting to hide in the house and hope it goes away but it's time to be brave and talk about it a bit more, as women we are experts in looking after everyone else it's now time to look after you. Don't be afraid to do your research and be your own advocate. Plus be brave and talk about it with your friends, for me at may not be relevant to some of my close group of friends right now but something that may effect them in the future. Don't sit on an icepack at home, be brave and open the door to and talk to others.

Some cancers you can get rid of and, if you're lucky, block them out and live your life like you never had it. Vulva cancer is not one of these. Even the minimal surgery is disfiguring and if, like me, you have all your lymph nodes removed you are left with yet another reminder; lymphoedema. Mine starts in my lower abdomen and was down to my knees but had now spread to my lower legs. On good days walking feels like wading through treacle, on bad days putting one foot in front of the other just isn't an option..
The worst affected area of all is my genitals. The swelling and pressure is so painful I can't even sit properly. My mons is more like a mountain and out of my fat suit I pack a bulge that would make Beckham green with envy!
I haven't been to a lymphoedema clinic yet and don't have a compression garment or tights. There are several reasons for this;
I can't bear anyone to look at me or touch me and am having counselling to try and get me there as I really need help
The garment I was measured for by the district nurses is about 6 sizes too small.
My fat suit plays havoc with my umbilical hernia and causes excruciating pain in the form of colic so what the hell would a proper garment do to me?
I really feel for those ladies who suffer from primary lymphoedema but some of them really look down on those of us who have secondary. This makes you feel even worse about how your body looks and you just feel ostracised with nobody to turn to.
It's a horrible affliction, and when you beat cancer you still have a lifelong battle ahead of you with this bastard. The doctors play it down, make it sound insignificant and easily managed, in other words they know fuck all.

July 2019 my journey into my fifth decade was unfortunately not in an Aston Marin DB9 doing 0-60 in 4.6 seconds, It was one month from not knowing to knowing I had vulva cancer!
I accepted years ago that my body was unable to produce children. Eventually I was diagnosed with endometriosis and in 2010 I underwent a full hysterectomy. It was at this stage I was diagnosed with Lichen Sclerosis and sent away with a steroid cream, no advice or information. I spent the next nine years just getting on with it and my GP giving me repeat prescriptions.
In October 2018 I noticed sex was becoming painful and I felt like I had a stager when I peed. December I became ill with flu like symptoms lasting the whole month, which made my LS go bonkers, what I now know is called a flare up. I saw my GP as I noticed some changes to my vulva, in particular a spot that began to ulcerate. She explained that I’d need referred back to gynae consultant within the next six weeks. At this point I found an LS Facebook support group, which has been the most informative and supportive resource I could have hoped for. I realised that I hadn’t been properly monitored or ever told the correct maintenance procedure for using steroids.
I had to chase my appointment and was finally seen five months later in May and biopsied in June. July the month of my five decades birthday celebration, I was told I had dVIN 3 which is pre cancerous cells that had developed due to my LS not being in control. I was told I had to have part of my vulva removed!
So I spent my birthday in hospital, preparing for surgery. Every health care professional I saw reassured me that it had been caught early and I didn’t need to worry. It was at this point hubby and I decided to go public and make it our mission to help raise awareness and fundraise for LS.
I had my first surgery at the end of July 2019, it was mutilating! I walked like a penguin, sitting was uncomfortable and I felt I’d lost more of my women hood! My consultant also informed me she had found another area which she had biopsied during surgery.
Then ten days later the call came to say the consultant needed to see me! Hubby and I sat in a very cozy room waiting to be seen. Then like a punch to my belly I heard the words “I’m sorry to say you have cancer!” As I processed this information my husband fell apart, it was the anniversary of his father’s passing to cancer! I went into warrior overdrive...I hugged him and reminded him that I was strong and I would fight! I then recall being told that although they were confident at removing this trespasser, they could never cure the LS, which is what had caused my cancer! I would need close monitoring and under oncology care for the next five years. We were also told we would have to postpone our Christmas trip to New Zealand, gutted because this was a belated honeymoon and zero birthday treat.
As we drove home I thought about the 1:3 statistic, at least it’s me and not one of my brothers, then another punch in the tummy...how the hell do we tell Mouse, aka my mum!
Now I’m by no means brave, I have a genuine phobia of hospitals, stems from being snatched from my mothers arms as a toddler to have eye surgery. I also have a habit of passing out if I see needles! So the next month was full of scans, blood tests and appointments. On one occasion I met a cancer nurse who was Googling LS and Vulva cancer...not quiet what I was expecting!
My next lot of surgery was to be a hemivulvectomy and bilateral sentinel lymph node removal, brutal and mutilating! So I summonsed my army of friends and family to support us on this journey. I wanted humour so requested names for my surgery,
frag vag, duff chuff and my favourite foofoo fighter!
I posted this:
You will not steal me, only change me!
You will not beat me, only would me!
You will not take my sparkle, only dull me for a while!
I will be a warrior, I will fight you vulva cancer! 💜

I’m now eight weeks post second surgery and it’s not been straight forward! I left hospital after five days, with an infection in my right lymph node wound, a plethora of medication, some to help me go to toilet, a vulva that looked like it had been fighting with Mike Tyson and hubby had to learn to inject my tummy with blood thinners, which turned me black and blue.
After a week I was just going to the toilet when my dodgy lymph wound decided to recreate a scene from Shaun of the Dead! This was terrifying and hubby had to get medical assistance, I felt vulnerable and scared! I was very quickly having to learn how to cope with a new type of “normal”! I was put on antibiotics and told to attend clinic. My wound continued to eject fluid in a dramatic way, making me nervous about leaving the house. I had to constantly ask for check ups but it was my Macmillan support worker who enabled a more joined up approach to my after care. We then had some mixed news from histology results saying that the lymph nodes did not show signs that the cancer had spread and although margins showed cancer clear there are still pre cancerous cells. I now have very bad pelvic and genital swelling, which I’m having investigated I’ve been told is probably lymphedema and I’m still having issues going to the toilet.
It’s been an emotional rollercoaster, I felt grateful in one way but feel angry and let down! I will be having my first gynae oncologist review in November to find out if I have to have radiotherapy and to check my bladder and bowel. I understand that this cancer is rare and that the reoccurrence rate in the next few years is high. I’ve been told there’s a good chance I will need more surgery, so I’m not out of the woods yet!
Without the information I have gained from the support groups I have no idea how I’d be coping right now. I’m glad we went public as I have found writing humorous posts about this journey therapeutic, I’m about to organise a fundraising festival and looking into setting up a charity. I needed to do something to channel my pain and frustrations, life will never be the same again!
So Lichen fu##ing Sclerosis to cancer I dedicate this song to you...Mylie Cyrus You Came in Like a Wrecking Ball
By Zoe Breen warrior in training 💜

I suppose my story starts back in 1988, I was 21 years old and had just had my very first smear test and guess what, it came back with abnormal cells, I was so scared, didn't know what to expect, the only information I was given was a small A5 leaflet, so anyway I had to have a colposcopy followed by laser treatment, this may not be relevant to my vulva cancer but what is, is the regular smears and check up's I had to have.


Jumping ahead, I gave birth to my first child, my son, in January 1993 and very soon (I mean just a few weeks) after I developed an itchy lump on my vulva, I wasn't particularly worried, thinking it was something to do with the very difficult birth I had, anyway at this time I was having smears every 6 months, I mentioned the itching and the lump and was told I had a bit of thrush.


My smears and check up's continued, nothing abnormal with the exception of regular thrush, I then fell pregnant with my second child, whilst having a hospital check up they noticed I was overdue my smear, they made me have one there and then, it was done by a Gyn, by this time my lump and the itching was getting worse but still tolerable, she (the Gyn) said its all good and nothing to worry about. I gave birth to my daughter in November 1994, another very difficult birth, suction delivery and way too many stitches. I was sent home within 24 hours with an infection in my stitches. I had to have the stitches taken out, so I had a huge open wound that took 3 months to heal, during this time, I saw my doctor, several nursed and 2 OBGYN's.


My point in giving you my history is that I was seen by a lot of medical professionals and I was told "it is just thrush and nothing to worry about", so I didn't. As time passed it got gradually worse so I just started using more cream, changed brand, was also prescribed a cream for a fungal infection (not thrush) but still didn't worry.


In 1999 I had another abnormal smear, as before I had my treatment, I knew what to expect this time so it wasn't as hard for me, but again the Gyn was not concerned about my vulva issue. I was back to quarterly smears, then half yearly and yearly, then the breakthrough, I was told everything was good and I could go to 3 yearly smear tests.


I lost count how many people saw my vagina, from nurses to Gyn's and nobody was worried about what I called "my rash"
Over the years my rash got worse, the lump got bigger, smaller skin tag like lumps appeared and the itching, oh that itching was horrible, it woke me up several times in the night, for years I hadn't slept through the whole night, I continued using thrush cream and got very paranoid about my cleanliness, so starting bathing four times every day.


in 2015 I noticed a lump in my groin, I didn't get it checked out as we were going through a lot with my mother in law who was very, very poorly and passed away in the December. Throughout the year the lump kept getting bigger until one day in February 2016 I stretched and pulled my groin and the pain was horrendous, thinking I had a hernia, my husband took me to A and E, got there at 9.30am, had several people check me over "Yes Mrs Hinch, looks like you have yourself a hernia" spent most of the day waiting around but I did get a CT scan, they scheduled me for hernia surgery and sent me to the ward, to await my surgery that would be around 8pm. At 9pm (yes 9pm) a doctor came in to see me and told be my CT scan didn't show a hernia, for some reason I asked what were the chances of it being cancer, he just said "pretty high" and walked out, thanks mate, what do I think now, what do I do, need to talk, nobody to talk to, hmm phone hubby, he said he would come straight away, so I went out of the hospital and being a smoker decided to chain smoke whilst waiting for my husband, when he came I just poured everything out and burst into tears.


The following day, still in hospital, I was visited by a consultant, a doctor and a nurse, with a very large needle, the nurse talked to me, the doctor held my hand and the consultant stuck the needle in my groin to get a sample of what was inside. oh the pain, now I know why they came in a gang of three. A couple of hours later I was sent home, with no diagnosis, with the exception of a CT scan report that showed no issues to any or my organs. Well I suppose that's something.


A few days later (I was on sick so not working) I was rudely awakened by a phone call, PCH Gynaecology Unit, "we have made an appointment for you blah blah blah" oh my god, I thought the worst, you know after all the laser, cancer was the first thing that popped into my head, my hubby, my rock said don't panic babe its probably nothing to worry about, bless him, he tried so hard to stop me from worrying.


I arrived for my appointment and went through, had a chat with the Gyn and he said he wanted to give me a good check over, so I had to go into THE ROOM, you know, the one with the chair, the stirrups and the TV screen. Anyway, stripped the undies and got in the chair, legs all akimbo, not so dignified, he took one look and said "it looks like a type of skin cancer, we need a biopsy" so I had a local anaesthetic, ouch, and he took his biopsy, the nurse said "you can watch on the monitor if you want" err really no thank you. had that and a full check up including a smear test and was sent home. So we, cause hubby came with me, went to the hospitals Costa, told him everything, I was still numb so didn't even think how much pain I would be in very soon, ouch.


Why oh why do they always ring so early, yes a couple of days later I had another early morning call, again, "good morning Mrs Hinch we have made you an appointment" that was quick, too quick, panic, cry, oh my god I must have cancer.


On appointment day, I went through to his office, he sat me down and was so blunt, "you have cancer of your vulva, at the moment it is stage 2 but if we find any more areas with cancer the number will go up, here are some leaflets, thank you Mrs Hinch, Addenbrookes will be in touch for your follow up, goodbye" really, is that it, no help, no explanations, what do I think, how do I feel, I am so bewildered I haven't the foggiest.


within a week of my appointment I was sent for another CT scan and an MRI.


When I was called with regard to my results, the Gyn/oncologist was on holiday so they asked me if I wanted to go to Hinchinbrook, what the hell I thought, let's get it over and done with. Oh what a difference, the staff there were so nice, kind and friendly. I was told my vulva cancer was a scuamouse cell carcinoma (argh can't spell it and it had spread to the lymph nodes in the left and right groin and my abdomen, so the number was now 4b, they looked very sad, which prompted me to as what are my chances, their reply was "minimal"


The next couple of weeks went very slowly, had a few appointments, treatment plans, lots of confusion and tears.


Then I did kinda give myself a huge kick up the backside, did I really want to fall apart, I have a lovely family, I have great friends, I need to be strong, I want to live. That was the moment my view on this journey changed, I am going to beat this cancer.
I started my treatment, not at hospital, my friend had just qualified as a hypnotherapist, he offered to help, so I took him up on his offer, he spoke to my "subconscious" and told it/me to work with my treatment and help me to cope with the treatment side effects, well more complicated than that but that it in a nutshell.


So I arrived at Hinchinbrook for my first treatment that was an all dayer, well they all were but hey ho, petrified of losing my hair I opted to try the cold cap, so I had to be there earlier and leave later for each appointment. my days consisted of wet hair, put conditioner on, put cold cap on, switch machine on and freeze to death lol. Find a vein, ok find another vein cause that one don't work, oh dear neither does that one, finally we found one, canula in. steroids into canula followed by piriton, sickness meds and god knows what else, "Ok Mrs Hinch are you ready for you chemo" I had an hour and a half of a chemotherapy called Carboplatin followed by three hours of a chemotherapy drug called Paclitaxol, then another one hour wait with the cold cap, it has to go on before the chemo and come off after. Well except a small allergic reaction to the Piriton (that's a bit ironic isn't it) I got through that pretty much ok.


I now had three weeks until my next treatment, I was off sick but I was able to work from home, so I kept myself busy, hubby took me out shopping at the weekends, you know the nice kind of shopping, clothes, shoes, afternoon tea, watched movies that made me laugh and I stayed very strong and happy throughout with the exception of waking up in the morning, when the first thing that comes into your head is "I am going to die"


This three weekly cycle went on for five treatments, the next step was the radiotherapy, but first I had an MRI to see what they would be looking at, well, well, the treatment was working almost too well, they were all quite surprised, my vulva looked clear, so did most of my lymph nodes. my next job was those tattooed dots, which I am still thinking about getting tattoos on :)


Started my radiotherapy journey, 25 sessions, 10 minutes, daily with a session of chemo, Cisplatin once a week, now that did make me feel sick, so I told them and they gave me more drugs, at this time I was taking 13 tablets a day.


I had imagined that the radiotherapy would be a doctor pointing a laser beam into my vagina hehe. Oh it looks like a CT scan machine, silly me, anyway I laid on the bed of the machine and the radiologist said "you might want to shop for some different underwear, pretty ones are going to aggravate you" oh no I said I am a complete underwear whore, I need my nice matching undies, hmm I really should have listened. The actual radiotherapy was a piece of cake, just laid there listening to the music, had a good chat before and after, nothing to it, hmph right up until the last week, oh the burns, the blisters, the blisters popping, on my last radiotherapy appointment I went through 5 pairs of knickers because my blisters were popping. They didn't want me to have my final session of chemo because my burns were so bad but I insisted, I thought if the treatment doesn't work I don't want to think was it because I didn't have that last chemo, so they were not happy but they let me have the treatment, but sent me home with codeine and morphine.


They explained to me that the treatment continues to work for three months and that the next three weeks would get worse before it got better, they were oh so right, my usual position at home was no undies, legs spread with a fan pointing at my poor burned legs and vagina.


I was to go back for a check up in three months, after having a CT and MTI scan. My consultant walked in and said "good morning Tracy, you are looking very well, your wig looks so realistic" err it's my hair, I used the cold cap, it worked, what I really wanted to say was come on get on with it, have I still got cancer or not, but I kept that to myself, "I am so happy to tell you that your scans were all clear, there is no sign of any cancer, it's all gone.


Thats when you go to pieces, there is no way to express that happiness.​

My name is Jayne Hyde I'm 34 years old.
When I was 25 my vulva started to itch, I didn't think much of it. At the time I worked in a teenage girls home and I had to take one of them to the sexual health clinic. I knew I had to get this itch seen to and when this timid teenager had to go, I thought if she could do it then so could I.
I booked an appointment and took a friend with me, when the sexual health doctor looked she said I had a wart and prescribed me some cream to get rid of it and told me to come back in a week.
I went back and the wart had gone but she could see something else and then informed me it could be vulval cancer, but as it takes a long time for this to develop I could be lucky and it might be only VIN.
I had to go to my GP to make a referral for me to the hospital. Which obviously I did.
My appointment came and I went, there was a male doctor and a female nurse. I was told to strip off my bottoms and get in the chair. I was terrified, he took a look at my bits and said that I had a leison 2cmx3cm and that it needed to be removed. Next thing he told me to cough and I asked why, he said cough, so I did and then he stuck a needle in me with local anaesthetic. Needless to say I swore.
He then cut out the area, stitched me up and said they would call with the results and sent me on my way.
I got a call a few weeks later to say it was VIN 2 but I needed more surgery as they didn't get clear margins. I asked the nurse if I could have it under general anaesthetic and she said it should'nt be a problem. My date came through and I went and did the same routine. Once in the chair I said that I had asked for it to be done under general anaesthetic and his response was that he was not prepared to do it under general anaesthetic as he didn't need to remove much, so unless I was going to have a nervous breakdown it would be done now under local anaesthetic. Well he said cough and I cried my eyes out so he backed off and agreed to rebook for general anaesthetic.
I went to have the rest of what I needed to be removed, removed and they called me to say that between the 2 surgeries it had gone from VIN 2 to cancer but that had got clear margins this time so no need to worry.
They informed me I would have 6 monthly check ups to begin with then it would go to yearly. All was great for a year and a half then it came back. My consultant had changed and I had a really nice lady. She said she needed to do a biopsy but gave me numbing cream to use before the procedure. I was still terrified when I went back in but held it together and she managed to do it with local anaesthetic.
Results came in, it was back but as I was only 28 and it had come back quite quickly they were going to transfer me to another hospital where they had specialists in this area.
Whilst waiting for my appointment I became anxious as I knew from a couple of years before it turned to cancer within a month or so. When I called up to ask what was happening as I hasn't heard anything for a month they said it would be a while as I needed to be discussed in the monthly MTD meeting which would be next week. I was informed not to put my life on hold waiting for the appointment as it may take a while and as it's not a fast progressing cancer they weren't concerned. During this time I had lost my job to having a breakdown and lost where I was living but hey.
Finally my appointment came through and I was prescribed Aldara cream to use and to go back in three months. Luckily the cream worked with minimal side effects and I was told that the VIN had gone. They wanted to see me again in 6 months.
6 months came and no return, they were happy to discharge me back to my local hospital with 6 monthly check ups untill I was clear for 10 years. Since then I have had 2 infected cyst's and one biopsy, I also had LS which they gave me steroid cream for.
At the moment all is looking good but I still get soreness and itching now and again but I know I am being well looked after.

I had been experiencing itching and discomfort on my vulva off and on for about 7 years or more. Canesten was a constant repeat prescription with only limited relief. I had presented over the years with symptoms and been treated for thrush, or advised about washing powders, soaps or too much sugar in my urine. In the year leading up to diagnosis I had been told my symptoms were from menopause. With hindsight I should have been more direct and explicit with the doctors and asked to be examined. My burning and pain felt like it was at the vaginal opening so that's what I complained about.
In September 2018 I presented myself at the locum GP and told her I thought I had Lichen Sclerosis as the burning, itching and bleeding was unbearable. She corrected my pronunciation of Lichen Sclerosis and then asked me what did I know about it! I lied and said my mother had it and on that basis she then examined me and confirmed my self diagnosis. During the consultation she discovered I had been bleeding post menopause and advised that she would be sending me for womb biopsies. Bleeding after menopause needs investigation as it can be a sign of womb cancer. I'd been dismissing it as just my hormones and wasn't unduly concerned.
Two weeks later I was seen at an outpatient clinic for biopsies of my womb. Unfortunately, as I'd never had a vaginal birth my cervix was too tight and the doctor couldn't get through to take the samples. After a number of attempts and increasingly torturous looking equipment he said I was going to have to be admitted and have the procedure done under general anaesthetic.
I was admitted a couple of weeks later to have a hysteroscopy and biopsies under anaesthetic. On the morning of surgery I had a chance conversation with a consultant gynecologist that I since have had no doubt saved my life. I asked if she could be gentle during surgery as everything was so raw and sore down there. She was surprised that the steroid regime for Lichen Sclerosis hadn't been helping, and she suggested doing vulval biopsies as well.

Three weeks later, barely a week before my 49th birthday, I was told I had VIN3 and squamous cell carcinoma of the vulva. My womb biopsies were clear. Had the vulval biopsies not been taken I would have been misguidedly walking about thinking I was fine while my cancer continued to grow.
It was another month before the surgery to remove the cancer took place. I also had sentinel lymph node dissection on both sides to check if the cancer had spread.
I was lucky, my cancer was contained in the vulval area, albeit very close to my anus and there was concern that trying for clear margins could damage my sphincter and risk incontinence.
Scroll forward to the present and I've had biopsies repeated as I was symptomatic and the gynae oncologist suspected there was evidence of VIN. I'm just waiting, hoping for the best but won't be surprised if it's not good news. Vulval cancer likes to recur, especially within the first two years.
I'm surprisingly calm about it. Even though it's been a tough journey. It's the things you wouldn't expect though that I've found tough.
I'm blessed with amazing family and friends and I've had amazing support. Messages of thoughts and prayers from people I barely know really lifted my spirits in difficult times. They helped compensate for the people who couldn't handle my diagnosis and disappeared.
The judgement can be pretty tough too. Comments like, " Oh well at least it wasn't breast cancer!", "awe at least it was only surgery and she didn't need chemo". I don't think you can compare cancers and cancer treatments like that. All cancer sucks in my opinion. Vulval cancer, like any other cancer, has its own individual challenges. It's quite rare and a lot of people have never heard of it. Those that have heard of it believe it to be only an older ladies disease. The average GP will see only one case every seven years. It's difficult to talk about because of where it is. It's still a taboo with a stigma attached - as if we got it because of our sexual activity. There are lots of misconceptions about vulval cancer but it's not the easy cancer some believe it to be. The surgery to save our lives is often described as barbaric and mutilating by some ladies. The physical and psychological after effects can be severe and long lasting. It's painful, and traumatic and often very lonely and isolating. Finding the facebook support group truly saved my sanity, despite me having a really great support network.
I've been very open about my diagnosis, using my experience as an opportunity to raise awareness where I can. I no longer care who judges me as long as people talk about vulval cancer. I use the word vulva as often as I can and encourage others to as well. It should be as normal as saying elbow - although judging by the look of horror on some folks face sometimes, we are a way off that level of normal!

I attended my doctor in 2017 with a small ulcer that wouldn’t heal on my vulva. My GP said I also had a lot of white areas that looked like lichen sclerosis(LS)and she was referring me to gyne.
October appointment at gyne said I had classic LS and the ulcer was nothing to worry about and to come back in 6 months.
December the ulcer was still there and getting bigger.
February 2018 saw different gyne who did a biopsy and phoned me a week later to attend the hospital that afternoon.
Attended to be told I had vulva cancer. I had never heard of this cancer before.
Surgery to remove a part of my vulva and lymph nodes was scheduled. The surgery was originally scheduled for 2 hours but instead was over 7.
Results from surgery showed margins were not clear and I was to be given 27 sessions of radiotherapy.

Some people said “ oh is that not the better cancer to get?”

Attend my checkups regularly every 4 months and no problems until June 2019 when I have a weird sensation in my thigh. Go for my regular checkup with specialist and we find a lump in my groin.
More tests and scans and biopsy’s , brain going into overdrive.
July 2019 told I have terminal cancer as it has returned and got itself deep in the muscle and too near femoral artery so they can’t do surgery only some radiotherapy to give me a bit more time as without the treatment I only have 2 months. It has also spread to my lungs.
Instead of enjoying life as a mother, sister, daughter, aunt or gran I have a different set of priorities.
To make it easier on my children,
I have now arranged all the hard bits, my funeral, my will.

So no it is not 1 of the better cancers to get.

I was diagnosed by myself with Google at 56 after 5 gynecologists. Despite being a nurse I had never heard of any vulvar lichenoid diseases. I fused rapidly . It was relentless burning, stabbing ,needle like pain. In 3 months I lost one labia, 50% of other and had clitoral phimosis. The pain of clitoraldynia rendered me unable to function. I ended up losing a job I loved and going on disability. My life is forever altered. I eventually had lysis of adhesions .All activates of daily living are compromised. Depression is a struggle. The lack of education within the medical community does kill women. 60% OF vulvar cancer is undiagnosed lichen sclerosis.

I am not a stranger to the dark
Hide away, they say
'Cause we don't want your broken parts
I've learned to be ashamed of all my scars
Run away, they say
No one'll love you as you are
But I won't let them break me down to dust
I know that there's a place for us
For we are glorious

I was about 9 or 10 when I first thought that there was something wrong with me. I would find myself scratching my vagina in my sleep. I didn’t feel I could talk about it to anyone. I was too ashamed, I thought I was dirty. In the early eighties it wasn’t something people would openly talk about. Looking back on it now, we had bleached coloured toilet paper and itchy washing powders! I would constantly have cystitis and constant constipation. As I got older I would have to hide my knickers from my Mum, and put them in the bin. They would be worn and covered in blood (not from my period). I found periods impossible ! These really made me scratch. Pads would thoroughly irritate. Friends from school would invite me to stay. I didn’t want to lose them as friends so I would go along praying they wouldn’t notice anything. I’d make sure that all the covers were over me at all times. When I met my first husband sex wasn’t painful at all but my skin would bruise a lot. I went on to having two beautiful children. I always remember the midwife asking me if I was a horse rider, she said my vagina was very tight. As the years went on in my first marriage it wasn’t too bad. But when I got divorced I suffered a tremendous amount of stress and my vagina caused so much pain and discomfort that it become unbearable! My bottom became itchy and patchy too. I had a few relationships but nothing too serious as I was embarrassed they would look at it too closely when it was bad and I couldn’t keep up with having sex on a regular basis as it would cause too much pain. I went backwards and forwards to my my GP only to be told I had severe thrush. Once they even said it looked like Herpes. I had blisters and the skin was covered in thick white patches. No one knew what it was. This happened on many occasions re the thrush but the problems got worse. I kept on getting recurrent urine infections too, including a kidney infection. Anyway I just thought it was thrush right up until at the age of 43 when I happened to be watching a programme called Embarrassing Bodies and there was a lady on there who was diagnosed with LS. I thought to myself, hmm these are all similar symptoms to mine. I’d never heard of LS until then. I spoke to my GPS nurse and she said it could be and that was it. A few months after watching Embarrassing Bodies I had the worst flare ever, it was blistering and so uncomfortable. The vagina had turned completely white and bruised. I even found a red looking boil once! I couldn’t bare to walk or sit down. It was debilitating. I took myself to the sexual health clinic. I didn’t know what else to do. She took one look and said you’ve got LS. Your vagina has completely changed I’m afraid. The labia minora has completely flattered. They also said the clitorus couldn’t even be seen. It makes sense now. I wasn’t going mad, I am not a freak , no wonder I had trouble climaxing for so long ! I felt relieved to be honest. They refereered me to a specialist who then confirmed diagnosis, there wasn’t any need for me to have a biopsy as the diesease had gone too far. I started using the clob and I feel so much better. I still get my bad days but nothing like before. This disease causes not only great physical pain but also mentally damages you. It’s so important for people to get diagnosed early. I have found life better with my LS buddies on the Uk awareness site. It’s so lovely to know that I am no longer alone !

It was March 2016 as I watched my wife walking down the stairs in hospital crying in pain after having some biopsy’s and just new we were in for a very difficult time.
Another appointment later and our worst fears were confirmed. My wife has Vulval Cancer. I felt, scared, sad and kinda helpless as I couldn't do or say anything that would make my wife feel better. I needed to be strong and confidentfor my wife (although I felt like breaking down in tears), telling her we’ll get through this together, all will be fine.
What I wasn’t prepared for was the trauma my wife had to endure and the consequences of the surgery to remove the tumour. The devastation endured through 58 sessions of radiotherapy, further hospital admissions due to cellulitis and lymph node removal, has been very tough to bear, and am so proud of how remarkable my wife has been during all this treatment. Never complained, never moaned and even in the greatest of pain has put on a brave face and soldiered on.
My wife is now having to endure the after effects from having cancer, the onset of the menopause brought on by the radiotherapy, lymphedema due to the radiotherapy and the constant pain in her leg and groin due to the operations she has had done.
The list is not exhaustive, but we will deal with each step as it comes. We are both very angry about the lack of awareness of this little known cancer, and Lichen Sclerosus, all the misdiagnoses by GP’s in particular and my wife has fought tirelessly everyday to raise as much awareness as possible, talking to the press, liaising with the Eve Appeal, using Social Media as a platform to shout loud and proud to the public about Vulval Cancer. My wife has had many messages of thanks and many going to see there GP’s and getting diagnosed earlier.
For me, our lives have changed forever. I have cried, I feel sadness often when I see how much pain my wife is in, I miss the intimacy, but, I love my wife with all my heart and even though life will never be the same pre-cancer, I’m lucky we still have each other. When we got married in 2006 we made a vow, in ‘sickness and in health’. Together we’re stronger, together we will fight this and together we will never let cancer take over our lives.

Hello all, my name is Catherine and I am 63 years old.
Three weeks I received a diagnosis of Lichen Sclerosus ( L.S.)
If I go back 6/7 years earlier however to noticing hair loss (scalp) and a receding hairline , this can be a part of auto-immune disease to which LS can be linked along with thyroid changes and vitiligo, I had noticed darker patches on my arms after being in strong sunlight recently whilst on holiday. Much of this information I have learnt more recently and its interesting to learn how many of us have similar experiences. Along with the sun these patches went away. My GP did a blood test and my thyroid function was normal, and the hair loss was put down to hormonal and age related changes.
Three years later I noticed that I was experiencing intense vulval itching. I searched for a cause and thought of a reaction to cleansing with fragranced baby wipes , and then to scented bathing products . I changed what I was doing re washing /cleaning but the itching persisted. I was about to remarry about 6 years after being suddenly widowed (stress), I had retired at 55 from a very stressful career. I visited my GP, was examined and prescribed an oestrogen cream to apply to the vulval skin, and told that this sort of problem is common in post menopausal ladies. The oestrogen cream helped somewhat but the itching persisted, bedsheets would be spotted with blood as well as underwear. I began to think that the oestrogen cream might be making the itch worse. So I used sudocream instead, I have found that ointments stick around longer than creams, sudocream being more like the consistency of an ointment. I know about the “itch/scratch cycle, the more you scratch the more you will itch, “ scratching increases inflammation and causes excitation of nerve fibres” (www.medscape.com ) and” the brain releases serotonin which gives temporary relief” (www.bbc.co.uk-health-29819754) I was wary of hotel and overnight stays with family and friends and would wear knickers at night so as not to mark the sheets.
I was still looking for reasons for the itching, was I allergic to chlorine? I do aquafit and am scrupulous about getting chlorine off, I wondered if I was allergic to toilet paper as the itch was intense when I blotted after urination, I wondered if I was diabetic and had glucose in my urine, but urine tested negative. I began to have an itchy anus , I had some surgery there after the birth of my large son 32 year ago. Haemorrhoid cream stopped that itch . I had a mesh sling inserted for urinary incontinence about 28 years ago and wondered if my body was rejecting it , that may still be a factor!
Luckily my new husband and I for a variety of reasons decided that penetrative sex didn’t matter after we tried it and I was in agony. That was such a shock I really didn’t put two and two together at all. I examined myself and saw no architectural changes just the appearance of sore and broken skin.
I revisited a GP, she examined me, took a swab and prescribed aqueous cream to shower with avoiding any shampoo run off to vulval area, I had already stopped using fabric conditioner, but noticed that I had irritation if I wore underwear that my husband had washed at his house , long story. I said to GP do you think I may have LS. She didn’t say yay or nay. She gave me a weeks course of Betamethasone (a steroid) ointment and Zerobase as a moisturiser. I also began to use the oestrogen cream internally twice weekly . I thought I was cured at the end of that week!
I had to return for more supplies as the itching returned. I went out to Australia to look after daughter in law and new grandson and had an experience I shall not forget. At the airport on my return I had to put the Zerobase into my suitcase and walloped plenty on in the airport loos, thinking long flight sitting down . I was going through security and a scanner when I was called forward to look at the image and perhaps offer an explanation as to what the opaque area was around my groin! Bloody hell, said I , its an ointment I am using . I am 63 , with replacement knees and scoliosis , e.g. not likely to fit the terrorist profile so I went on my way .
This year on returning from the USA had same experience in security, only this time my hands were swabbed for traces of explosives! I overheard another member of security say that the same issue had ocurred with the guys and jockstrap itch ointment. Apparently it all depends on the settings on the scanners. I still haven’t found out what ingredient in the Zerobase showed up on the scanner image.
I had another GP visit and was reissued with more Betamethasone, told her about my airport experience, she was surprised and mentioned aluminium as being the culprit? I asked for a moisturiser that stayed around for longer and was prescribed Zeroderm, an ointment .She said that the time had come on my next visit if things did not improve to refer me to gynae for a biopsy. The Zeroderm was more effective but I still experienced the pain of trouser seams, with prolonged sitting down, and the itching /scratching/bleeding persisted . The GP had surgery herself after that time so I made an appointment with a colleague who is male but has dermatological experience! As I expected he didn’t examine me but read his colleague`s notes and told me that it appeared that I did indeed probably have Lichen Schlerosus!
And so I began the Lichen Sclerosus protocol Clobetasol once daily for first month, then every other night and then twice weekly . I have published my local area guidelines on the site. My symptoms are improving!
I am going back soon to a female GP who also has dermatological experience.I am returning because I have questions , bladder issues- frequency-urgency on many days I am incontinent because the sensation of needing to pee comes on suddenly , I have noticed that if I cut down on caffeine the problem is not quite as bad. I tested my own urine – no bugs in it .. and what progress has been made following the protocol.
I worry about my descendants and their chances of getting LS at some point in their lives. I get teary reading the posts on the site especially where children and young women have the symptoms and when it affects reproduction and new relationships. I am saddened to hear that so many women (and men) around the world have LS and get angry that they have to suffer for so long before diagnosis .
Talking helps, sharing helps us all, and we together increase our knowledge and therefore power to bring about change .
I am so glad to Facebook and to Emma and friend for this site.

Hi, my name is Theresa and I'm one of the 1339 women diagnosed with vulval cancer in 2015.

Unfortunately my story is all too familiar. I'd suffered with itching for as long as I could remember, but when I went for my smear test, it was particularyly bad, the senior practice nurse said that I had warts and I was referred to the GUM clinic, it wasn't warts so I was then sent to gynae, after being told it was thrush four times I was eventually diagnosed after two years with Lichen Sclerosus and given a steroid cream to treat flare ups. I had check ups every year for three years.

In early 2015 I was in agony, I had an appointment due and tried to bring it forward (at least twice), I couldn't get in to see my GP so went to the local walk in centre, where they said I had a urine infection and gave me antibiotics. When I did get my appointment they did a biopsy and said to come back in two weeks time. My husband Steve wasn't due to come with me to the hospital, but his job finished early so he came with me, when the nurse called my name I said see you in a bit, she said do you want to come too, at that moment I knew it was cancer! (They had never asked if he wanted to come with me before).The cancer specialist nurse told me the news, she was so well organised, I had blood tests that day (Wednesday), was booked in for a ct scan for the Friday, and was due to see the oncologist on the Monday. The hardsest part was telling my parents and sister over the phone as they live so far away from me. We decided not to tell our son, who is autistic, as he thought you get cancer, you die. Four weeks later I had my surgery, a hemi vulvectomy to remove the vulvar and clitoris, the next day the surgeon came to see me, I wanted to know how it went and how many stitches there were, he said thirty stitches, I then asked are you still going to remove the lymph nodes, his reply, hell yes! Ok, I thought we got this, six weeks later I had the bilateral lymph node removal, six on the right side and eleven on the left, one came back with the cancer so I then had twenty five sessions of radiotherapy.

I was having regular check ups every three months, when in November last year I felt something wasn't right, I had a biopsy and it came back as differentiated VIN, I had check ups every six weeks after that, and then in febuary this year they decided to remove an area they weren't happy with, small op later and the results cam back as differentiated VIN again. I'm now on six monthly check ups, going through the menapause and have lymphodemia in both legs. I've had amazing support from my family and friends.

Women need to be made aware what to look out for, I'm angry that the nurse that did my smear test was not aware of Lichen Sclerosus, neither were the district nurses that came to check up on me, they hadn't heard of vulval cancer before. If the nursing profession don't know about it what chance have other women got!

Hello, so this is my LS journey. It began early 1997 with my first symptom of perineum itch but I believe it had begun before that as I had not felt 100% for a few months.

The year of 1996 was one of the most stressful year of my life with events coming one after the other. My parents had died 5 years previous and I was renting their house out, at the time it was empty and my husband was helping me with repair work on the house. Unfortunately through the repair work a fire started and the house was gutted. It took many months to sort out the house and get it habitable again. Unknown to me my husband had gone to the house and put the water back on for the first time in months. The water tank was damaged and burst and the house was flooded from top to bottom bringing in the ceilings. I set out a second time to renovate the house which finally culminated in my decision to sell the house, which had been my family home. Loosing my parents, then my family home was a huge thing to try and deal with while having children and working. I carried on and shelved my trauma somewhere in my head.

In the same year my eldest daughter, who at the time was not street wise, went to university in Oxford where she ran up a lot of debt after meeting and moving in with what we later found out was a con man. This culminated in him raping her and she was hospitalized with a uterine bleed. At the time we were told unless they could stop the bleed she would have to have a hysterectomy. The bleed did stop and I brought her home, took on the debt and nursed her back to health. My youngest daughter was diagnosed as dyslexic and so began the battles at school for her.

I consider that my main cause of Lichen Sclerosis was stress and over the years the symptoms have exacerbated when I am stressed. My personal coping strategy with stress was to bottle it up and shoulder on.

As the itch got worse I thought I had thrush and went onto an exclusion diet cutting out sugar and yeast, I did this for months and can remember kneeling in front of the fridge crying because I was so hungry and hadn’t got the foods in I needed and my symptoms were no better. Having a young family and working full time there was little time to think about myself. Eventually I went to see the doctor who examined me and said it looked like thrush and gave me Canestan, I visited him again when it didn’t improve and was given the same diagnosis. My symptoms of itching and soreness continued for a number of years as I had believed my doctor and didn’t question his diagnosis. I also thought I may have leaky gut after reading a lot about it. This caused me to refine my diet and take some supplements, however the symptoms continued.

The ten years from 1996 to 2006 were a mixture of busy family life, work and continual management of my symptoms, I didn’t look after myself as I ignored the symptoms and continued to think it was leaky gut/thrush. I used Vagisil cream to numb the area. We had been to America for a holiday and I was able to buy a supply of double strength Vagisil cream which isn’t available in England. I managed until the symptoms got so bad it filled my mind and I had to take notice. At this point I had no idea what the problem could be but I realized it was not just thrush. I then hit on the unpalatable thought it may be a latent sexually transmitted disease of some kind so I made an appointment at the GUM clinic. I was so traumatized and ashamed doing this and being examined and swabbed but it was probably the best thing that I did. The nurse called in a doctor there to examine me and she said had I heard of Lichen Sclerosis? This is the first time I had heard this term and had no idea what it was. The doctor there referred me back to my own doctor with a referral letter asking for me to be referred onto a Gynaecologist. All the results from the GUM clinic had come back clear.

I read everything I could about LS and it fitted so well to my symptoms. I am a private person and having to go through this GUM process was itself embarrassing and upsetting and I felt even more traumatized. The LS had destroyed my sleep pattern as I was getting up at night to get in the bath and put on cream. It`s not something that is after dinner conversation so I felt isolated and totally alone trying to deal with this. My parents had been my support system and I had never been able to talk to my husband about emotions of any kind as he saw these as weakness. I still had a younger daughter and working full time I can remember thinking in the middle of one night about `the dark night of the soul` and going through in my mind if suicide was a better option. I had suicidal thoughts on and off over an extended period but knew I wouldn’t act on it because of my young daughter. I couldn’t leave her alone when I had known the agony of loosing my own parents and having to deal with life alone.

Eventually I was referred to a lady gynaecologist and had a series of biopsies under a general anesthetic. She told me I would have a `biopsy` but when I came round I had had numerous biopsies so my vulva was excruciatingly painful and I couldn’t pee. I was so upset to have had this done and not been told how it would be. I felt like I had my power taken away, I had been damaged in the most delicate area when I was unconscious. I felt so shocked yet again. I think this was the turning point where I decided to help myself I had lost trust in the medical profession and other than a diagnosis had not been helped in any way.

I went back to my GP for the results of the biopsies and it was Lichen Sclerosis. He prescribed Clob and I got the cream and tried it. It felt like I was on fire and I read about it and as advised I went back to the GP. He told me to carry on using it and the burning would wear off. If not he could change the cream but to try first. I couldn’t just `carry on`.

I was at all time low and felt the only person I could rely on was myself so this started my 8 year quest to find an answer for me. I will describe my way forward but this is in no way saying it is right for anyone else. I stopped the steroid cream and sourced creams that were moisturizers and for sensitive skin and natural as possible. Some of these I used were coconut oil, Aloe Vera gel , babies Sudocrem, Vaseline etc. For the itching I sometimes took paracetamol, particularly if I couldn’t sleep, I`m no expert but I understand the itch message to the brain goes via the same pathway as the pain message. Hence a pain killer can help the itch. I used olive oil soap to wash with and a non-bio wash powder for my clothes. I also had homeopathic treatment alongside.

This was my management plan to help me be as comfortable as possible while I did a lot of reading and research. I found out that there is a large school of thought that LS is an auto-immune disorder and this was another starting point for my rationale of self help.

In 2010 I decided to go back to adult learning and took a short course in counselling. This lead to a new career pathway as I have followed this for the last 7 years and I am now an accredited Psychotherapeutic Counsellor. Talk about healer heal thyself, it has been this life path that has helped me the most.

I learned that stress can have a hugely negative effect on the immune system and cause all sorts of problems. I believe that the events of 1996 caused so much stress in my body that it could not maintain health and the `complaints department` in my body became my vulva. I know that year was devastating and changed my health. I also realized that I was carrying a lot of emotional baggage from those events and I had never really dealt with the shock and trauma, just shelved it. So as part of my training I started having regular counselling and this began my psychological healing. It hasn’t been easy and there have been no pat answers or miracle cures but I felt empowered, I felt more in control of my life and my own ability to heal. I also continued having homeopathic treatment.

I found out that inflammation is part of Lichen Sclerosis and that this causes higher histamine levels so I started to take an anti-histamine, not regularly but when the symptoms seemed to be worse and this cut short the flares.

During my training I have completed a diploma in Cognitive Behavioral Treatment and one particular technique really `spoke to me`. This was conceptual reframing where you work towards changing the way you see a situation, you learn to think differently about a life situation. This has had a huge impact as I have been able to go back to 1996 in my mind and change my thinking and I have been able to reframe the anger, resentment, disappointment and blame. I have been able to change my thinking, it has taken many months to work with this but now I feel at peace in my mind. What I find most amazing is the more my mind has found peace the more my LS symptoms have decreased and on April 14th 2018 they stopped!

I still work with present time reframing so that I don’t store away mental negative baggage and I still occasionally take anti-histamine because I don’t know if the odd itch is what women feel who haven’t got LS or it is a small reminder of the LS. I have forgotten what normal feels like in that area of my body. So my story continues I don’t know what the future holds but I have a hope for the future and believe in my own body wisdom. I feel like I have some control back where before I felt I had very little and the symptoms controlled me.

Just to say that I would go to the doctors if I need to and recently went to a lecture on self-examination so I do examine myself and hold an awareness of that area of my physical body and staying healthy.

I was 52 when I noticed that I had a small lump on my vulva and it was quite a while before I did anything about it. To begin with it just stayed as it was, like a small hard pea like lump just below the surface but it didn't hurt and I only only knew it was there if I felt around for it. I thought that it was almost certainly a cyst and ignored it. Over the next few months it grew bit by bit until finally it was about 3cm in diameter and it became quite sore. A few days later it burst and released some horrible red flesh like stuff that looked like nothing I had ever seen before. It healed up and I thought that was the end of it but I could still feel a small lump, about the size of a grain of rice.

Over the next few months it got bigger again. I had a smear test booked at the GP and I mentioned to the nurse that I had a 'cyst' and her response was 'yes I can see'. She didn't seem at all bothered about it so I decided that there was nothing wrong and everything was fine. Once again it grew to the same size, ruptured the same as before and oozed the same horrible fleshy stuff that it had the first time. It wasn't what I felt a cyst should be like but again I did nothing about it as I didn't really want a GP poking about 'down there' and if the nurse wasn't worried why should I be.

The third time that it got big again I decided that I needed to get rid of it. More because I didn't like the thought of having this nasty thing down there growing, bursting and coming back constantly. It was about 18 months since I first noticed it by then. I still didn't think it was anything to be concerned about. I had used Google to look at vulval cancer and mine wasn't like any of the things they said so I was sure it wasn't cancer or anything nasty. I made an appointment with the GP and she took alook at it, decided that it was an infected cyst and gave me antibiotics. I was to go back in 3 weeks if it didn't clear up. It didn't so I went back to the GP and she referred me to a gyn to have it removed.

I saw the gyn and he scheduled an op to have it removed. He thought it was a cyst too at that point but it felt odd, with the 'cyst' being in 2 separate capsules but joined together. He said that the tissue would be biopsied as a matter of course. I didn't hear anything more from him for about 4 weeks although I had an appointment to see him about 6 weeks after the op just as a post op check. He rang me while I was at work, in the office, asked if I was sitting down and told me that it was cancer. I was very shocked because I had no idea that there was any chance of this being cancer. He told me that it was a very rare type of cancer and they had only been able to find 2 other cases so there was hardly any literature on it. The pathology had taken so long as they weren't sure what they were dealing with initially so they had to run many tests to ensure that the diagnosis was correct. He sent me for CT and MRI scans of the chest, abdomen and pelvis as they needed to see if it had spread anywhere. Luckily for me there was no evidence of that. My original gyn said that he 'didn't do cancer' so I was referred to a new gyn. I much preferred the new one anyway. It was decided that I should have another op to remove more of the tissue where the cancer had been to ensure that they got clear margins. I had the second surgery called a wide local incision and waited for the results of the new pathology.

The pathology results showed that there was no evidence of the cancer having spread and my gyn was reluctant to do any lymph node surgery as there was no evidence to suggest that it was beneficial for this type of cancer and he felt that the risk of lymphodema was quite high. I had 3 monthly checks to start with and after the first year have now moved onto 6 monthly checks. Apart from having less vulva tissue on the right hand side, and if you look closely you can see a long line where the stitches were. there is no real evidence of having had an issue. I know that I'm lucky that I haven't had to have extensive surgery like some of the girls with vulval cancer have had, and nor have I needed radiotherapy or chemo. As the cancer is rare they are unable to tell what might happen in the future but for the time being I work on the basis that it's gone for good.

My advice to anyone with a lump in the vulva is to get it checked out. It might be a simple cyst like I thought mine was but getting it checked will give you peace of mind, and if it is something more serious then you will get the right treatment so there is nothing to lose. I was embarrassed about going and thinking that I was causing a fuss, and I could well have left it longer that would have been a silly thing to do.

In January 2018 my wife went in for her smear and half an hour later shot past me in the waiting room and out the door. By the time I got out there she was on the ground against the wall sobbing like I've never heard before. When I finally got her up she kept saying something about cancer and I didn't get what she meant. We got a taxi home and she went into silent mode, just staring ahead and lost in her own world. After being in the house about an hour she told me what had happened. How the nurse who was doing her smear didn't like the look of a spot she'd been scratching for weeks. How a doctor had come in to give a second opinion and they thought it was cancer. I felt sick, dizzy, scared and angry all at once. We just sat there on the couch and I didn't have a clue what to say to her. My vibrant, bubbly wife who had already been through so much shit now had this to deal with and it just wasn't fair. I also wanted to go back and smack the doctor who had dismissed her without examining her and also the pharmacist who told her it was herpes and accused me of playing away! Me and Deb have had some real tough times and were working to try and rebuild our relationship and this bombshell caught us both on the hop. I honestly didn't know how to react. Deb hates being fussed over and is a horrible patient so I knew we were in for a rocky ride. From then until now I've been in enough waiting rooms and consulting rooms to last me a lifetime. Add a hip replacement, a house move and weeks of travelling back and forwards to hospital every day on crutches and you have the most stressful few months I've ever experienced. I've been to hell and back since February but nothing compared to her. I never realised just how strong my wife actually is. She has taken on everything that's been thrown at her and dealt with it better than I ever could. I was feeling particularly miserable one night and she told me in no uncertain terms that when they took my hip out they put a new one in, but what she'd had removed was gone forever. The physical side of our relationship is on hold and we sleep in different rooms. She feels ugly and disfigured and has very little feeling left. To me she's still the most beautiful woman in the world and she always will be. The cancer has changed her, and it's changed me. I'm angry that she had one that nobody has heard of. I'm upset when I see her crying when one of the women in her support group has bad news. I bite my tongue when she lashes out and remind myself it's nothing personal. I love my wife and I'm proud of my wife and whatever else life decides to dump on her I'll be there.
Steve
59

When my son, who is now 24, was born, i tore quite badly on my perineum and vulva, and for a long time afterwards i was really sore particularly during sex. Around 15 years later i mentioned it to my GP, as one particular area was now really itchy and sore all the time and she took a look. She immediately said she would have to refer me to a gynaecologist. I am extremely grateful and lucky to have had a GP who recognised it was an ulcer that was not healing.
At my gynae appointment i was reassured that it was not cancer, it was highly unlikely to be pre cancerous even, as i was young (40) .
A biopsy was taken and it came back as VIN - vulval intraepithelial neoplasia, a precancer- and positive for the hpv virus. I was told that it was best for me now to have a wide local excision - a surgery to remove the dodgy cells and a safe margin around them. Surgery on the vulva is extremely painful and debilitating, as i found out.
I was called on New Years eve by a specialist nurse who advised me that the consultant wanted to see me, and at this point my head said "you have cancer" , although the nurse would not tell me anything except to bring someone with me. Again, my head said "youhave cancer" My relationship had recently broken down and i was moving house with my two children a week later..
The day before i moved house my sister came with me to my appointment with the consultant. I have a terrible memory, but 8 years on i remember that appointment quite clearly. The Consultant said he had to tell me i had cancer, he said he had nearly fallen off his chair when he got the results back, vulval cancer was an old ladies' disease. Clearly this is not the case.
Since that diagnosis i have had 8 or 9 surgeries, ive actually lost count. I get checked every 6 months and my latest check up led to a large biopsy, which noted the hpv virus still active. Some hpv strains are bigh risk for cancer.
I had some lymph nodes removed from my groin also. I had cells burnt away from just inside my vagina one time, the only word for that is agony, i fainted from the pain post op.
Vulval cancer is brutal and yet its virtually unheard of.
I would really like all women to be aware of the possibility of vulval cancer and also to have their children vaccinated against the hpv virus.
Natasha (47)

I am 65, mother of three, grandma of five.
I found a lump inside my vulva in December 2014, I paid privately to
‘put my mind at ease’ and saw a Consultant the next evening. She examined me for five mins, said it was nothing - a cyst in the Bartholin Gland - and she would put me back on the NHS list.
I received a letter informing me this Cyst would be removed in the April 2015, I tried to forget about it, I am not a worrier, but it kept growing and it was uncomfortable ie on the bike in the gym!
Has the Lump removed it was deep and I struggled much more than I thought I would, then after a few weeks I got the call to attend the next day, obviously I knew what was coming ...
Was told it was cancerous, would need no more operations as she had got it all, but would need radiotherapy.
I then was referred to the London where they are the experts and I felt safe. I do not blame the first Consultant, I had Adencarinoma of the Bartholin Gland, quite rare and she obviously had not seen it before. I had never heard of vulva cancer at this time.
I had another operation and lymph node removal on July 1st, they could not get clear margins, but my lymph nodes were clear. so I followed this up with chemo once a week and radiotherapy for six weeks.
Writing this down it sounds simple, but it was a long hard struggle, infections, mobility, bladder and bowel problems to name a few.
I now have Lymphodema which has its own challenges.
I still still my Consultant every four months. This October I will be three years clear (I prefer not to write this and tempt fate)!
I do not dwell on my illness, I am lucky, I got to 63 without having any health issues. However, on my support group some of my friends are much younger, with young families and health issues and misdiagnosis... much harder for them.
Vulva cancer is hard to talk about at first, but it’s important women know the signs/symptoms, if I had been too embarrassed to go the Doctor, who knows where I would be now.
Sandy Betts.

Autumn 2017, and for the first time in years life was sweet. I had come home after living in spain for 4 years and within weeks I had a new job, a new flat and so much to look forward to. The only flaw in this perfect picture was a bloody itch 'down below' that wouldn't go away.

Since having CIN 3 when 22, and visiting the colposcopy clinic after every pre-natal appt and having laser treatment 6 weeks after giving birth, I've been extremely pro active in regards to my gynae health. By December I was making myself bleed with scratching and could feel a small thick lump. I toddled off to see my new (male) doctor and explained the symptoms. He didn't examine me and said it was a menopausal itch, perfectly normal, and gave me this stuff like lard for the bath.

A few weeks later I was so sore that I took a picture and went to see the pharmacist. She hummed, hahed, decided it was herpes, sold me an uber tub of Sudocrem and told me to go to the GUM clinic. I knew she was wrong but only had to wait a couple week until I had my smear. When I got there I apologised in advance for being clagged up with cream. We were laughing as I got onto the table and assumed the position, then the laughing suddenly stopped. She disappeared and came back with a doctor. I've always been blessed with great hearing but the moment I heard the C word whispered from the other side of the I really wished I didn't. That was also the moment I got on the scariest, most painful roller coaster ride I'd ever experienced, and part of me still hasn't got off.

I'm ashamed to say I didn't know that part of my anatomy was called the vulva. As soon as I got home from the smear, by taxi after my legs gave way in the car park, I hit Google like a demon. My search for "skin like cancer in foof flap" didn't help much. When I had my biopsy less than 2 weeks later the doctor was old school, blunt to the point of rudeness and blessed with a warped sense of humour "I don't think you need to order your wooden box just yet Mrs Cook".

The official diagnosis of vulva cancer came 2 weeks later and the ensuing weeks passed in a blur of hospital appointments, CT scans, a WLE, infected stitches and moving house. I thought the ride had come to an end in April when I went back for my check up then whallop! the curve ball that changed my life forever. The tumour had been bigger than they thought so they wanted bigger margins meaning more surgery in the same place. A biopsy from the other side was VIN 3 so they were lopping a lump off there as well and for good measure a sentinel node biopsy would be done at the same time.

I walked out of there in a daze then the anger took over and I had what can only be described as a full on tantrum in the corridor of the QE. For the first time I thought why me? Being told you have cancer is the absolute pits, being told you have one you've never heard of is really taking the piss. I had been treating cancer with Sudocrem for Gods sake!

The 6 weeks between that appointment and the second surgery were the longest of my life. I had to tell my family I wasn't out of the woods and for the first time I really saw how they were affected by all this. I had been a single mam who they had never seen ill, now they were watching me fight the most cruel indiscriminate disease of them all.

What happened on the day I went back for my surgery I can't tell you as quite frankly I don't know. Something had gone awry and I should have been there the day before to get the dye injected into the tumour site to show them where my sentinel node was. I got to the hospital sat 0645 to find out I was booked in to have all my lymph nodes removed from both groins. This procedure had never been mentioned so I had no idea what it entailed. By 3pm I was given the ultimatum; surgery or go home. Hungry, thirsty, exhausted and emotionally f**ked I apparently gave them permission to perform the surgery that has changed my life forever.

I arrived at that hospital with an overnight bag and was there nearly 4 weeks. My body rejected the drains that were meant to be in 5 days within 24 hours, cannulas had to be bandaged on as they kept popping out, I had several infections,developed thrush and was taking enough drugs to render a cart horse senseless. When the staples were removed the wounds opened is several places and lymph fluid shot out like a wild west oil strike. I've blocked out a lot of this time as I don't want to remember the pain, or the anguish, or what I called the surgeon for removing what turned out to be perfectly healthy lymph nodes.

I didn't celebrate when I was told I was all clear, I didn't cheer when I was told no further treatment was needed. I just felt numb, then sick, then angry and then the tears came and wouldn't stop. Once home district nurses came in twice a day to pack and dress my open wounds. A few new ones popped open and at one point they had to attach a machine as I wouldn't heal.

The nurses have gone now, the wounds have healed, the lymphoedema has taken up permanent residence in my legs and what's left of my genitals and the most painful scars are those you can't see. Even now, writing this with tears pouring down my face, it's as if this was someone elses nightmare and I was just a bystander. My swollen, misshapen legs are a helluva reality check..... Vulva cancer may be rare but it's very real and robs you of so much. So much needs to be done to stop other women suffering the way I, and thousands of others have. I still have a long way to go but intend to do everything I can to raise awareness.

Deb Cook

My name is Heather Campbell .
I suffered with extreme itching and discomfort in my vulval area for about five years and was treated for a number of things including a fungal infection and vaginal atrophy but not correctly for Lichen Sclerosus. Eventually following my own onlineresearch I went to the GP in February 2017 with the question ‘Is it Lichen Sclerosus?’ Following a further two GP visits and at my insistence I was referred to a Gynaecologist in May 2017. Straight away she was able to diagnose a severe case of LS and requested a biopsy as she had some concerns regarding one area. In July 2017 following the biopsy at the age of 59 I was diagnosed with Vulval cancer. I underwent two surgeries to remove tumours which included the removal of my clitoris and all my groin lymph nodes.
I will always wonder what would have happened if I had the LS identified sooner and started treatment would the cancer have been prevented? If I was aware of Vulval cancer before maybe I would have taken action sooner.
Of course I was shocked and upset when I received the diagnosis but the hardest thing was sharing the news with my four children. Telling my son on the phone in Australia that not only would I not be visiting but I had cancer was one of the hardest things I have ever done.
Fortunately having undergone the surgery I am now 9 months cancer free. However my scars and structural changes and the fear of developing lymphodema are a daily reminder of my journey.​

Jane Lewis has written this article to share her experience and help to empower women and break this taboo. I am so grateful to her for allowing me to share this on my website.

Vaginal dryness / vaginal atrophy
Vaginal atrophy – it really is the very very last taboo of menopause. It is so hush hush that ladies are not even discussing it with their own partners / family / friends and even their GPs. So, I guess we really are not helping ourselves…

Perimenopause

Right, so let’s start at perimenopause, which for me was from about 46. Contrary to popular belief (amongst a lot of the medical professionals also) I was still having a regular cycle with no hot flushes. For me, both these seemed to get an answer of “well you can’t be in peri/menopause as you still have periods and no hot flushes” … which was definitely not the case for myself and many other ladies out there. We are not all text book cases, but are all individuals, which must be remembered by us ladies and the medical profession.
From the age of 35 our hormones start to fall at a dramatic rate as does oestrogen (which our urogenital area really needs). Perimenopause can for some last up to 12 years, all this time our bodies are on a roller coaster ride and the consequences of what can happen to the vaginal / bladder pelvic floor area is very much underestimated.

My experience
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So at age 46, sex started to get painful and I would be sore afterwards for a few days… I realised a couple of years prior to this that my normal sticky clear discharge had completely gone with no discharge at all. Then at 46 I had a very watery milk like discharge (which I now know is one of the many signs of vaginal atrophy) and had a look (need to look ladies) – I was shocked, everything looked so dry / red raw/ thinning skin on the point of splitting, my urethra was so sore, labia atrophying it was like tissue paper, pubic hairs sparse. My bladder was also rather troublesome. By this point I could not wear pants / trousers / no sex at all/ sitting down was barely possible, going for a wee required using water to wash afterwards from the soreness – I felt like I was basically sitting on a bonfire a lot of the time. I also had stabbing pains in my vagina and the clitoris area, basically the whole area made me go almost mad, anxious and depressed.

We do not need to suffer

Some ladies get all of the above, others get one or two of them… there is no need to put up and shut up like previous generations (I have deepest sympathy for those ladies). However, as we are now living up to 30 years post menopause if you ignore these symptoms you/we are going to suffer unnecessarily as vaginal atrophy can’t be cured, it can only be managed requiring continuous treatment for life. So this is not a stop/start scenario of treatment contrary to popular belief… perhaps another case of not knowing the real facts that surrounds this painful reality.
So that this phase in our lives we have gone from a lush green “English Country Garden” to the “Sahara desert” where the area now needs continuous hydration, otherwise it reverts to the Sahara dessert very quickly… similarly, do you stop watering your house plants?

Different treatments

I am now 50, and after 4 years of lots of trial and error I consider my vaginal atrophy managed, requiring rather a lot of time devoted to it… so what do I use / tried/ do now? I have tried almost every vaginal product available, all the local oestrogen creams / pessaries / ring / and systemic HRT. We have to be very careful with some of the products available as many of them have a high “osmosity” which puts our PH levels out of balance which can cause further problems and make the condition worse. Something like YES / sylk products are the best for us.
I am also using Oestrogel, which is the systemic oestrogen part of HRT, Utorgestan for the progesterone part (though considering having the Mirena coil fitted) plus the Estring (which is local oestrogen in the form of a silicone ring that sits high in the vagina for 90 days and releases a small amount of oestrogen continually). I also use Estriol cream on the vestibule area, and YES oil based to moisturise the area daily. So, as you can see I need everything for my urogenital atrophy, all these have helped.
Also, I have just completed my third “Mona Lisa Touch” treatment which so far seems to have made a positive difference. The skin looks amazingly healthy now and episiotomy scars that were almost splitting have bounced back. The treatment is all to do with promoting of collagen production. For ladies who have had breast cancer and may not be able to use oestrogen this is really worth investigating.

More education often needed

So, get yourselves educated and read the NICE guidelines. If necessary I am afraid you may have to go privately to sort this out, and get the care time you deserve. Menopause seems to have been forgotten in any medical teachings, unless a professional has a real interest in learning about it… After all, 52% of the population are going to go through the menopause, we have bought the next generation into the world and it’s now our time to look after ourselves.

HRT is not all bad!
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Don’t be scared of HRT; there is so much misinformation out there! The lack of hormones can and does for many have devastating consequences and this is no longer necessary. Also, the type of HRT I use is not exclusive to the rich and famous – it is all available on the NHS. Do not suffer in silence anymore. Educate yourselves and if necessary be prepared to educate your GP.
So as this a site for lichen sclerosus awareness, from reading my blog you can see how similar both conditions are, as is vulva cancer and other skin conditions too. So it’s very important to get the mirror out and become familiar. Do not self-treat initially.. always get medical advice first. As for me, I am in a lot better state than I was but every day is still a challenge.
Unfortunately vaginal atrophy cannot be cured, it can only be managed.