Vulval cancer: Kim’s phenomenal ordeal of loss and triumph

Patient experience: vulval cancer

Vulval cancer: Kim’s phenomenal ordeal of loss and triumph

In 1994 Kim was diagnosed with vulval cancer. To this day, she has not only survived the most harrowing times any woman could imagine, she fights every moment to raise awareness about vulval cancer. She says she wants to speak out so that women around Australia learn about vaginal health and take the power into their own hands. Kim relates a story of power and uncertainty over a devastating loss.

Lip service

Kim says when she was diagnosed with cancer of the vulva, like many women, she didn’t know what was going on.

“Most women don’t even know what a vulva is; it’s your external genitalia,” Kim says.

Kim explains how up until recently in our society, women were not even aware of their own genitalia. She says women need to have knowledge of their bodies and not leave it just to the doctors.

So what is a vulva? It’s basically everything outside of your vagina you can see with your “naked” eye, no pun intended. Essentially, it includes both sets of lips (known as labia majora and labia minora), your pubic mound, your lymph glands, the vestibule of your vagina (where you open up) and, of course, our favourite bit – the famous clitoris.

Years before Kim’s cancer ordeal, she was diagnosed with the sexual transmitted disease human papillomavirus, or HPV. Even then, she explains, she didn’t know enough about her body to understand what it was or that it has been linked to cancer.

Which is why, she says, asking questions and researching your own body until you are satisfied you understand what is going on is the most important thing women can do for themselves.

The lump that changed a life

Patient experience: vulval cancer When a small lump was detected in Kim’s vagina, it had to be removed and sent to pathology. At the time, Kim was unsure of what it meant. When she was telephoned one day by the doctor, it was revealed to her the lump was cancer.

From then, Kim’s life changed forever.

Kim’s cancer was on the left of her clitoris and was malignant, so the doctors had to take out much of the surrounding tissue.

“I had my clitoris, vulva and lymph glands removed from the cancer,” Kim says.

“At the time, I was embarrassed, terrified and also angry, because it was something that was never talked about.

“I thought, ‘Am I going to die?’ I was disfigured … it was horrific.”

Kim says dealing with having her genitals removed was “catastrophic”, but it was only the start of her ordeal. Afterwards, she needed six weeks of radiotherapy to ensure the cancer would not return.

“It was so scary. Your skin burns, your hair falls out, you’re physically weakened,” she says.

She also says many women don’t know the effects of radiation on the skin in this area and she wants to raise awareness about the condition cellulitis, which is extreme inflammation of the skin.

“Where the skin was radiated, it’s very thin, so I had to go on antibiotics to avoid infection in this area. Then I got thrush, which is incredibly unpleasant too.”

As you can see, Kim’s road through Hell was difficult and still continues to be a struggle. However, she says one of the greatest weapons we have through emotional and physical pain is camaraderie and speaking with other women for other women.

Vagina monologues

Patient experience: vulval cancer Kim says it was a long road until she found an avenue where she felt truly understood by the people around her. She eventually found other women who had experienced vulval cancer and, through this support and understanding, she has been able to survive.

“We need to be able to talk openly. It cannot be hidden and women should not feel embarrassed or ashamed,” she says.

She says for any woman going through a similar ordeal, it is imperative to come out of the shadows and talk openly about female health.

Like a bat outta Hell

It’s more than fair to say Kim has been through Hell. But it’s even more important to say that, like a phoenix reborn, she has come out of the ashes to make the world a better place for women.

Kim now says she still monitors her vaginal health. She has not chosen reconstructive surgery, but she says that although her clitoris is removed, she can still experience penetrative orgasm.

“It’s not an easy road, but you have to connect with other women who have been through it and talk openly.”

Visit GAIN (Gynaecological Awareness Information Network), an organisation dedicated to supporting and educating women on gynaecological health matters.

More information

For more information on vulval cancers, including risk factors, statistics, progression, diagnosis and treatment, see Vulval Cancer.

The female urogenital system consists of all the organs involved in reproduction and the formation and release of urine. For more information, see Female Urogenital System.