I had a painful lump on my vulva for about two years, and I was diagnosed with cancer two weeks before my wedding.
The cancer was advanced and had spread to my lymph nodes, so I had a vulvectomy to remove tissue all the way down to the bone. I also had six weeks of radiation therapy, which made the skin down there feel burnt and blistered.
It took months to recover from treatment. There have been a lot of side effects. For instance, certain pants are still uncomfortable. And, although I can urinate, I’ve had a few bladder infections.
In terms of sex, it would be possible to have penetrative intercourse, but it’s too painful. I’ve had four children, and I’d rather go through the pain of childbirth than have sex. I don’t want to be touched down there.
My partner’s been fantastic and incredibly supportive – I couldn’t ask for anyone better.
I’m part of a Facebook community and I know women whose partners haven’t coped with it, especially if the woman can’t have intercourse. My partner and I have found other ways to be intimate.
I’ve struggled with shame and depression throughout treatment and recovery. Since surgery, I’ve looked at my vulva from above. I haven’t wanted to examine it closely with a mirror.
It’s too bad that people don’t know more about this cancer. You hear about common types, like breast cancer. But even many GPs don’t know much about vulvar cancer – the GPs I saw thought I had genital warts.
I’m over the embarrassment. If people ask, I tell them what type of cancer I had. If no-one talks about it, people won’t know. I didn’t know vulvar cancer existed before I was diagnosed.
Prof Jonathan Carter, Director, Gynaecological Oncology, Chris O’Brien Lifehouse, and Professor of Gynaecological Oncology, The University of Sydney, NSW; Ellen Barlow, Clinical Nurse Consultant, Gynaecological Cancer Centre, The Royal Hospital for Women, NSW; Dr Dani Bullen, Clinical Psychologist, Peter MacCallum Cancer Centre, VIC; Wendy Cram, Consumer; Dr Tiffany Daly, Senior Radiation Oncologist, Radiation Oncology Princess Alexandra Raymond Terrace (ROPART), South Brisbane, QLD; Kim Hobbs, Clinical Specialist Social Worker, Westmead Centre for Gynaecological Cancer, Westmead Hospital, NSW; Anya Traill, Head of Occupational Therapy and Physiotherapy, Peter MacCallum Cancer Centre, VIC. We also thank the health professionals, consumers and editorial teams who have worked on previous editions of this title.
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