Aussie woman reveals endometriosis nightmare that nearly took her life

Cathy spent years being ignored doctors, to the point where she almost lost her life because no one believed what was really happening to her.

“Endometriosis nearly took my life.”

Catherine Grima was 11 when she got her first period. By the time she reached Year 10, she would need a day off from school each month as a result of the excruciating pain she would experience.

“I would say the pain was what I imagined child birth to be like,” the now 60-year-old told news.com.au.

This pain only continued to get worse until she finally had a hysterectomy at the age of 45.

While working as a dental nurse, the Queensland woman would have to take days off to manage her pain.

She recalled having the lay down in the dentist chair during her lunch break just so she could get through the rest of the day.

“I didn’t know what I had back then. Doctors didn’t have a name for it, just painful periods. Most doctors were male and no idea what I, and others, were going through,” Cathy said.

“So every month I lost a day. Missed out on playing sports or going out somewhere special with friends and family.

“Growing up with a family five boys and no sisters, periods were not talked about. It was hush hush.”

After trialling multiple pain relief drugs to help manage the pain, Cathy found Mersyndol, which was a type of pain relief often given to dental patients, to be the most effective option.

She said the drug would “knock her out” so she was able to sleep through the worst of the pain.

And, for a long time, this is how she managed her condition.

Medicare is failing women and it’s About Bloody Time things changed. Around one million suffer from endometriosis. There is no cure. Help is hard to come by and in rural or regional areas, it’s virtually impossible. We are campaigning for longer, Medicare-funded consultations for endometriosis diagnosis and treatment. Read more about the campaign and sign the petition here.

Endometriosis almost took Cathy’s life. Picture: Supplied

She endured years of doctors minimising and brushing off her pain. Picture: Supplied

After marrying at the age of 21, Cathy and her husband soon started trying for a baby, but months passed and she did not fall pregnant.

Eventually she went to see a doctor who informed her that she had developed cysts on her ovaries, which he informed her was “quite common” and encouraged her to “just keep on trying”.

After nearly a year of trying, and one heartbreaking miscarriage, Cathy fell pregnant and went on to have three children in total.

‘They told me I was too young to get a hysterectomy’

During these years her pain was “bearable” and she breastfed as long as she could to avoid getting her period back.

“Things started to ramp up again when I was about 34. Severe pain again. Heavy periods. I could get a period every two weeks with just a few days in between,” she said.

“Doctors tried some hormone tablets that just about sent me around the bend. My poor kids and husband didn’t know what was happening.”

Cathy struggled with very little help medically until she started seeing a female GP, who booked her in to have surgery to remove her ovarian cysts, which was when she finally learned that she had endometriosis.

“After or during this surgery I developed a deep vein thrombosis in my groin which was not diagnosed,” she said.

“I had really bad pain and I told the doctor about it whilst still in hospital and he said ‘You’re used to a baby to distract you after your surgeries and so you’re feeling the pain more’.

I had previously had three cesareans. What a joke that was.”

Six months later, Cathy was rushed back to hospital as a result of the deep vein thrombosis, as the first blood clot was never pick up, it had calcified in her vein.

She had been placed on the contraceptive following her endometriosis diagnosis, but this had served to increase her chances of getting another blood clot.

The mum-of-three continued to battle increasing pain and heavy periods but was still told by doctors that at 44 she was too young to get hysterectomy.

Instead, they pushed her to get a Mirena, which is a hormonal intra-uterine device (IUD).

‘Help me’: Horror work conference experience

Everything came to a head in August 2008, when Cathy was away in Brisbane for a business conference while working as a retail manager in women’s fashion.

At the time, her condition had reached the point where she was suffering from anaemia, often fell ill from chest infections and was continuously bloated.

On the day of the conference, she had her period, which was heavy as usual.

She had just returned to her chair after speaking in front of about 60 other women when she turned to the woman beside her and said: “Help me. I don’t feel well”.

Cathy was rushed to the hospital where it was discovered she had suffered a major haemorrhage and her IUD had been dislodged from the force.

While she was still in emergency and after an internal examination, one of the doctors tried to tell her that she was 20 weeks pregnant, despite Cathy knowing this wasn’t the case.

“An MRI showed a huge football sized uterus and a grapefruit sized cyst on my remaining ovary. I continued to pass small apple sized clots until I had surgery,” she said.

“My endo was that bad it was all over the bowel and bladder. I needed blood transfusions post surgery. I was discharged after 10 days but I kept saying I’m not feeling well.”

Three days after leaving the hospital, she was rushed back to the emergency department with a spiked temperature.

She was put on antibiotics, which didn’t seem to have any impact on her condition. The doctor who conducted her surgery was called back and for days she told him about the “horrible discharge” she was experiencing, only to be told it was normal and “all the rubbish from the infection” being expelled.

Finally, one night a nurse took the time to listen to Cathy’s concerns and told her to call her the next time it happened.

“I said to her stay there and I’ll show you. I was able to wipe what looked like faeces from my vagina. Well, didn’t she go pale and run out the room to call the surgeons back in,” she said.

“I underwent more major surgery the next day.”

‘Endo can ruin your life and it can take your life’

Cathy’s bowel had ruptured and made a fistula or a tunnel from her abdominal cavity down through the wall of her vagina.

She had developed sepsis and the surgeons had to remove a lot of her bowel. She came out of surgery with a colostomy bag.

She had to stay in hospital for four weeks and was unable to return home to her family in Mackay until November.

Ten months later she had to go back into surgery to reverse the colostomy, with the surgeon also removing her gall bladder and appendix at the same time to “avoid any more surgeries down the track”.

Cathy with her daughter Jessica, who has also been diagnosed with endometriosis. Picture: Supplied

Eventually, at 45, Cathy was able to get a hysterectomy, though she still wishes doctors would have allowed her to get one earlier and avoid years of pain.

“Bloody endo. It sucks. It can rule your life. It can ruin your life and it can take your life,” she said.

“I guess I was just lucky to have survived and enjoy my life now.

“I honestly never thought I would see 60. So that was a huge milestone.”

Cathy noted that her own journey with endometriosis has helped her daughter navigate her own experience with the disease.

“Otherwise she would have kept persevering like I did – and this is where the danger lies with endometriosis,” she said.

About Bloody Time is an editorial campaign by news.com.au that been developed in collaboration with scientists recommended by the Australian Science Media Centre, and with the support of a grant from the Walkley Foundation’s META Public Interest Journalism fund.