A Portadown woman, who was diagnosed with terminal ovarian cancer four years ago, is urging other women to "know the symptoms".
Ursula McSherry is speaking out to mark Ovarian Cancer Awareness Month as a leading charity warns that key symptoms are being ignored – both by those experiencing them and their GPs.
New data from Target Ovarian Cancer shows how women are being failed as the awareness crisis in ovarian cancer deepens.
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Grandmother-of-six Ursula, 67, was diagnosed with grade 4b (terminal) ovarian cancer in September 2018, after months of back and forth with symptoms, including abdominal pain and bloating.
Having worked as a nurse for 40 years she knew something wasn’t right.
"I had been experiencing symptoms like tummy pain and discomfort around May or June of 2018, which got progressively worse," Ursula told Belfast Live.
"It got to the the point that if I touched my tummy, it was painful so I started to become concerned. I had had breast cancer two years earlier so I began to wonder if it had spread.
"By around July, I noticed that my clothes were getting extremely tight around my waist and as the month went on, I looked as though I was pregnant, to be perfectly honest.
"When I would get out of the shower and looked at myself in the mirror, I thought this couldn't normal to put on so much weight in this one area.
"Even as a nurse of 40 years myself, I would never have related that to ovarian cancer and I didn't know it was one of the symptoms," she explained.
In a survey of Northern Ireland women, Target Ovarian Cancer said awareness of key symptoms is still too low.
It found that 67% of women here do not know that persistent bloating is one of the symptoms.
Lack of awareness is just as bad for the others: abdominal pain (68% of women do not know it), feeling full (98%) and 46% wrongly think cervical screening also detects ovarian cancer.
When symptoms are ignored or passed off as more common conditions like IBS, ovarian cancer has time to advance before it is found.
The number of treatment options decreases, as do the chances of long-term survival. Because it is diagnosed late, the disease kills 3 in 10 women in the 12 months after diagnosis.
Confusion between cervical cancer and ovarian cancer can be fatal while thinking that a smear test also helps prevent ovarian cancer stops people from looking out for the key symptoms of this deadly disease.
Ursula visited her doctor in early August 2018 and was referred to a gynaecologist who examined her but said she could detect no symptoms of ovarian cancer.
"I was told that my ovaries and uterus were normal and she said that there was no problem. I'm a very strong person normally but at that point I sat up on the bed and burst out crying," Ursula added.
"It was sheer frustration because I knew that I had cancer and was at the end of my tether. I was just dismissed and sent back to my GP. My main concern was that I have a family history of ovarian cancer and l had some of the main symptoms."
Ursula was then referred to gastroenterology as she began to fear it could be a bowel issue.
"As soon as the consultant put a hand on my tummy I was sent for a CT scan. Three weeks after a gynaecologist said my ovaries and uterus were normal, I was told that I terminal ovarian cancer and that it was inoperable."
After several bouts of chemotherapy over recent years, Ursula learned this week that she is having a recurrence of ovarian cancer.
"If I had to go through this all over again, what I would do differently is gone to the GP sooner to see about myself rather than sitting on it for two months," Ursula said.
I would have also been even more assertive and demanded a referral quicker. At the end of the day it's your cancer and you need to be as pro-active as you can when it comes to diagnosis and treatment.
"If you have any worries or symptoms, get it seen to and don't be fobbed off. I feel that I've had to fight an awful lot along the way and come up against so many barriers that shouldn't be there.
"Ovarian cancer symptoms are not as obvious as others and can start off as very vague. The problem is that it's such a silent killer and by the time symptoms are looked at, it has spread quite a bit.
"It's the age old story that early detection is key."
The new data from Target Ovarian Cancer comes as figures from the NHS show a shortfall in the number of people being diagnosed with cancer – risking an epidemic of late diagnosis and early death.
Target Ovarian Cancer is urging the public to sign open letters to governments across the UK and tell them what is needed to combat the crisis: dedicated symptoms awareness campaigns across the UK to finally make progress in people's knowledge of the symptoms.
Annwen Jones, Chief Executive of Target Ovarian Cancer, said: “We know we’ve shifted the dial in the past 10 years, through the dedication of thousands of Target Ovarian Cancer’s campaigners but it is not enough.
“Knowing the symptoms is crucial for everyone. We need to make sustained and large-scale government-backed symptoms campaigns a reality. Progress is possible.
“If we do this, fewer people will be diagnosed late, fewer will need invasive treatment, and ultimately, fewer will die needlessly from ovarian cancer.”
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