Vulval Cancer~ My journey with vulval cancer By Linda O ‘Connell

I couldn’t tell you when this journey started for years I had this itch, was treated for thrush with cream and tablets that didn’t help.
Then I had my routine smear and they had to retest as there was a lot of bacteria there so they said I had bacteria vaginosis and put me on antibiotics, I thought great at least now they know what it is and they are treating it.Unfortunately not the itch went and by this stage it was doing my head in and thought I’m just going to have to live with it.
Months and years went on and this itch got worse and then a open sore developed. By this time I was back for my next routine smear the nurse looked and said we must keep an eye on that broken skin you could have eczema and gave me a mild steroid cream which didn’t help much. Another few months passed and I decided back to the doc to see about this open sore. Well the doc didn’t even look and said could be due to starting menopause and gave me HRT suppositories, had my answer yes this will be the end of it. This was coming up to Christmas 2017 and had been going on for over 5 or 6 years. I used the suppositories all through Xmas and repeated my prescription in January but it wasn’t helping it was actually getting worse. It hurt to sit it hurt when I walked and the itch was so intense it kept me awake at night. February came and one day I was sitting in work nearly crying in pain got up rang my doctor to make an appointment and told my supervisor I was going. Saw the doc that afternoon she gave me an examination and said I needed to be referred straight away for a biopsy. Three weeks later I got my appointment to see a gynaecologist he examined me and said didn’t think it was too serious but would biopsy it anyway. Got my date for April for my biopsy after my procedure my gynaecologist came to see me and said didn’t think it was anything sinister and he would see me in a few weeks. Four weeks later I was sitting in my gynecologist office to get my results he said your biopsy came back you have vulval cancer. No words just tears , said we need to bring you in to have a radial vulvectomy this was double dutch to me.
I cried all the way home in the car on my own. Got my phone call three weeks later to come in for my operation had a CT scan the day before my op on Tuesday 5th of June my 48th birthday. Had the op on Wednesday and gynaecologist said all went well they took some of my lymph nodes and he said they looked a bit nobly. Stayed a week in hospital and home to recover told me they would see me back in a month. A week later got a call could I come in to see my gynaecologist today. I knew this wasn’t going to be good news. He told me cancer had spread to my lymph nodes and I would need 25 sessions of radiation. Radiation was a nightmare first two weeks were ok but after that the burn started I could barely walk coming to the end of it. My dad brought me to all 25 session and said he could see me getting slower walking as the days went on. After it was over I had to go back daily to get the burns cleaned and dressed. Went back to work on the first of October thinking I could put it all behind me. But it’s always there in the back of your head I don’t think there is one morning I have woke up and not thought about what If it comes back.
So June this year a year after my surgery I felt a small sore. It’s starting all over again went to check up and needed a biopsy went back for results and they told me there are precancerous cells . This is called VIN Vulva intraepithelial neoplasia. Also told me I hadLichen sclerosus which could of been the start of it all but was never diagnosed.
So as I stand I’m waiting for my next operation and hoping and praying 🙏