At 46 I was fit, active and had always had regular menstrual cycles, so I was surprised when I had some bleeding after sex with my husband.
My GP sent me for an ultrasound and referred me to a gynaecologist, but I had to wait 2 months for an appointment. Waiting was stressful, particularly as I had other episodes of bleeding after sex, and noticed some pain in my vagina.
Finally I had my appointment with the gynaecologist. After discussing my symptoms, she examined my vagina and referred me urgently to a gynaecological oncologist, who I saw that same afternoon.
The gynaecological oncologist confirmed I had a mass on my vaginal wall. She did a biopsy and sent me for MRI and PET scans. I was devastated but tried to hide it from my kids.
The gynaecological oncologist called me with the results – it was a fast-growing SCC that hadn’t spread outside the vagina. The recommended treatment was 5–6 weeks of chemoradiation followed by interstitial brachytherapy.
Even though the radiation oncologist warned me that there would be some days I wouldn’t want to get out of bed, I thought I was indestructible. The reality of chemoradiation was bone-crushing fatigue, bladder discomfort, unpredictable bowels and aching bones.
The skin around my bikini line and inner thighs also got really red and irritated, and I couldn’t bear to have anything rubbing it. One thing that really helped was mixing up a saltwater solution in a squirty water bottle and rinsing the skin whenever I went to the toilet. I found this easier than getting in and out of the bath.
The brachytherapy was challenging because I was in hospital for 3 days, lying flat in the bed and unable to move. An epidural kept me pain free, though I did have quite a bit of vaginal discomfort once the brachytherapy needles were removed. Using vaginal moisturiser really helped with this.
Once treatment was over, I found it hard to go from seeing the treatment team every day to being on my own. I found it helpful to try reflexology, online yoga and join a gynaecological cancer support group. I also joined a study into the role of exercise in helping women recover after treatment for gynaecological cancer. Seeing an exercise physiologist 3 times a week made a huge difference. They pushed me more than I could have done on my own.
Using vaginal dilators also helped. The plastic vaginal dilators the hospital gave me were sturdy, white and horrible. I didn’t want to use them in such an intimate area, so I bought my own. Buying pretty silicone dilators gave me a sense of control, and they were a lot more comfortable to use.
Having a rarer cancer made me feel really alone. We all know cancer is out there, but when it happens to you it is quite overwhelming. It’s important to advocate for yourself and push for answers.
I found it helpful to try reflexology, online yoga and join a gynaecological cancer support group. I also joined a study into the role of exercise in helping women recover after treatment for gynaecological cancer. Seeing an exercise physiologist 3 times a week made a huge difference. They pushed me more than I could have done on my own.
Podcast for people affected by cancer