Global Women's Voices: Share Personal Stories

Kath, Australia

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I wish every woman in the world could hear my voice to learn from my experience with the removal of my clitoris vulva lymph glands - vulval cancer story

"YOU DONT KNOW WHAT YOU HAVE LOST UNTIL IT HAS GONE." Kath Mazzella.

After 8 years, I wish to break my silence about my experience with vulval cancer so that others can learn from this.

Can you, for a moment, begin to imagine what it would be like to be faced with losing the most intimate part of your body in a society that never discusses vulvas, believing you are the only woman that this has happened to? I soon found that this has happened to others but we have suffered in silence because no one talks about it. I want to break my silence.

What would drive a woman to speak publicly of such an intimate experience. I have felt betrayed, isolated, sad, frustrated and very, very angry at a society that doesn’t seem to care that this has happened to me.

My life between 1988 and 1994 was a series of stressful events, working full time, 3 teenage children from a previous marriage, over 5 years my father died of cancer, my mother and sister diagnosed with breast cancer and another sister became a quadriplegic.

I tried to take care of everyone in the family which seems to bring on early menopause age 39.

1988 I had two abnormal Pap smears which were lasered on my cervix, I did not question how or why. I learnt this AFTER my diagnosis that (Human Papilloma Virus) was on my records in1988 and that this virus is found in 99% women with cervical cancer. I don’t remember being told about this at the time. Women need to understand this virus to help protect themselves.

1992 I found a lump next to my clitoris I went to 2 GPs and 2 gynecologists over 18 month period seeking answers. All of whom reassured me that it was common to have lumps in the vulva.

The first gyn said that if it bothered me during sex then I could go back to the local GP and have it cut out as he did not have the equipment in his office! As he was so blasé about it I thought that I was just complaining about nothing. I WAS SO NIAVE as I did not have any knowledge about my gyn health.

The last gynaecologist said because I had seen so many doctors and it was obviously worrying me to think about whether I wanted to have it removed, I decided to have it removed. Three days later, while alone at home, the gynecologist phoned with the devastating news that it was cancer and I needed to see a gynae-oncologist as soon as possible. I was devastated to hear this over the phone, with no one there to comfort me. The lump had been there for 18 months. I had trusted the doctors, I thought that they knew what they were doing. If I couldn’t trust these four doctors, whom could I trust from now on? I felt betrayed.

If I had of known there was such a professional as a gynae-oncologist I could have insisted to see one during my 18-month search.

My husband Tony and I watched as the gynae-oncologist drew on the board how he was to remove my clitoris, vulva and lymph glands. Surely this was not happening. I was terrified. I soon realized how totally and absolutely ignorant I was of my anatomy and of my own gynecological health.
After my radical vulvectomy, (removal, clitoris vulva and Lymph glands) all I wanted to do was to live and how to survive all this mentally and physically. I had six weeks of radiation treatment.

I was given a mirror in the hospital to see my genitalia after my operation, the worst horror movie in the world had nothing on what I had to witness. I would wake up thinking it was just a nightmare but my nightmare was not going to go away. The nights were the worst. I am sure I cried day and night for a month.
I felt totally isolated from society. My whole life was tipped upside down. I would look in the mirror and see gaping holes in my groin through the sides of my underpants and what my husband was feeling about it, how he would look at me and feel about me with no

updated: 7/2/2004