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Difficulty getting ovarian cancer diagnosis

From Kim Hawker

In May 2009, at 43, I was diagnosed with stage 3c ovarian cancer, with secondary tumours in my abdomen and liver. I had a lot of difficulty getting diagnosed and want to let other women know so that this doesn’t happen to them.

I’d had pain during intercourse for years but put this down to a position that didn’t agree with me. Looking back, I also remember it being painful if I pressed my belly-button. Then I developed a very mild, intermittent pain on the lower right-hand-side of my abdomen. There was a lot going on in my life so, as the pain was mild, I dismissed it as probably a grumbling appendix. Over time, the pain became more intense and more frequent. After 12 months, it became unbearable during menstruation so I went to the doctor.

I had private medical insurance through my job so was referred immediately to a consultant gynaecologist at the local private hospital. She performed an internal ultrasound examination but had trouble finding my ovaries. Eventually she said there was nothing wrong, as “any problem with the ovaries is normally very obvious”.

Over the next few months I felt more unwell but convinced myself there was nothing wrong as I had just seen a consultant. I put on weight, but thought it was ‘middle-aged spread’. I felt tired and despite exercising didn’t seem to be getting any fitter. An odd feeling in my stomach I put down to indigestion. Pain below my right diaphragm was blamed on a fall while skiing.

I started needing the toilet in the night yet didn’t pass much urine. I felt like my guts were heavy and getting left behind as I stood up, as if there was water surrounding them. My whole belly was very swollen. The GP suggested a urinary tract infection combined with Irritable Bowel Syndrome. Another GP said diarrhoea was gastro-enteritis and that my gut was full of gas, not fluid.

I was getting worse. My mother had died of an unknown cancer at the age of 62. She had similar symptoms so I thought I might have cancer. But I had diarrhoea and she had constipation so perhaps it was just some sort of infection? I asked for another private referral, to see a gastric consultant. He thought it may be an infected appendix and said cancer was most unlikely as I was young, fit, ate well and didn’t smoke.

After more tests, the consultant told me the bad news – it was ovarian cancer. He said I would be better off under the NHS, so had organised an appointment with the appropriate gynaecology consultant. I realised then that there are different specialities within gynaecology. Months earlier I had seen the wrong type of gynaecology consultant for an ovarian complaint! Ovarian diseases are not “obvious” and despite being seen faster privately, I would have been better seeing the right NHS doctor in the first place.

I have learnt many things from this experience and I hope my knowledge can help others.

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Updated: 24 May 2010