In March of this year, I tested positive for HPV for the third year in a row. At the same time, I had noticed changes to the internal wall of my vagina and had been experiencing increased lubrication when having regular sex, which didn’t feel normal as I’m a menopausal woman. I had been called to the local hospital, Leicester General Hospital, for a biopsy and my GP suggested I get them to look at these changes. That happened in April this year and I was contacted just before the Coronation Bank Holiday weekend for an appointment with a consultant at hospital on the next working day. Thinking it would be fairly routine, that perhaps I needed some cells removed from my cervix, I told my husband I was fine and took myself off to the hospital.
Nothing really prepares you for a consultant telling you as soon as you sit down that you have cancer. Not only cancer but vaginal cancer. I hardly knew anything about it!
I’m a strong, intelligent woman of 59 who’s been through quite a bit of upset in my life, but I didn’t see that coming. I have a wonderful husband and we make love nearly every day, and now I’m being told that whatever treatment I have it will significantly affect my sex life. I was quickly booked in for CT, MRI and a PET scan, all within a week. The NHS staff were so amazing, and I must admit I really felt comfortable having the scans, even the PET one which left me radioactive for eight hours. I felt very lucky to have been dealt with so quickly and efficiently.
But what do you tell everyone? My husband has been amazingly wonderful from the moment I told him, and my daughter, who is a neonatal nurse, has been outstanding in her support and honesty, always discussing my options. She reminded me of some of the complex vaginal surgeries that exist now which gave me the core strength to know I would be strong enough to get through all of this. My sexuality is so important to me, I was going to fight for it.
I was diagnosed with poorly-differentiated adenocarcinoma from biopsies from the vaginal wall and now we had to discuss the options: Radiotherapy, but if that failed I’d be facing everything being removed from my lower abdomen. The other option was surgery, total vaginectomy and full hysterectomy. I asked about vaginal reconstruction but again this could be tricky if radiotherapy was required after surgery.
It was my daughter who encouraged me to have the reconstruction and I had a weekend to make my decision. I decided on surgery and reconstruction, but I also asked for another meeting with my consultant. I needed him to get me, to understand who I was and reinforce quite forcefully that he was not to touch my bladder. Looking back, I would recommend anyone to make their consultant aware of important personal choices. They asked me if quality or quantity of life was most important. I said without hesitation quality.
Now I was facing up to fifteen hours of surgery and three surgeons working on me. I was acutely aware of the time, money and expertise being put into me. I needed control and I planned my hospital visit like going a few days away, buying coordinated nighties, towels, make-up and books.
In the end I had nine hours of surgery, and everything had, incredibly, gone to plan. The amount of time and money put into my diagnosis and surgery could not be underestimated. I knew how incredibly lucky I was that the cancer had been detected in its early stages.
Post-surgery, I honestly felt like I had a completely changed body. I was feeling numb in the tops of my legs and lower abdomen due to nerve damage. The worst thing by far though was having a bladder that just did not want to work on its own so off I was sent home with a catheter and a supply of bags. It was all horrible, but I just had to take my time and go with it.
Vaginal cancer is rare and having reconstructive surgery isn’t always possible or offered. I’m thirteen weeks post-surgery now, and so thankful to be cancer free, but it has been more challenging than I imagined. I have struggled to come to terms with the slow progress of my recovery although my family and friends have been wonderful, and I have drawn so much stren
gth from them. Getting rid of the catheter in my bladder is next and then it’ll be thinking about sex again!
I just know how incredibly lucky I am to have been diagnosed and treated so quickly. My cancer was stage 1 and it had spread quite rapidly between diagnosis and surgery. I owe my life to my incredible surgeons and the NHS. I hope my story will help others facing this cancer.
My advice to all women would be to get to know your gynae parts, be aware of how your body feels ‘down there’! We are encouraged to check our breasts so why not our vaginas? Speed of diagnosis saved my life and has given me a life to go back to.
You can find out more information about vaginal cancer here.
If you have any questions or concerns about any worrying symptoms you are having, our Ask Eve nurses are here to give free and confidential information and advice. You can get in touch on nurse@eveappeal.org.uk or 0808 802 0019.