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.
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.
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.
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.
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.
Write something about yourself. No need to be fancy, just an overview.