Kat’s story

Kat and her family.

For years, Kat was told by doctors she might never have children due to severe endometriosis. Now, the mother of twin girls, she wants to create more awareness, so that other women – and her daughters – don’t suffer.

Kat McNamara, 33, considers herself lucky, despite the fact that for the past 17 years she’s been fighting a silent condition. Told that she may never have children due to severe endometriosis, Kat is now mother to healthy twin girls.

At age 16, a school nurse told Kat that severe pelvic pain causing her to miss classes might be more than ‘period pain’.

Kat, a park ranger from Phillip Island, Victoria, was diagnosed with stage IV (severe) deep infiltrating endometriosis through surgery at age 19. Her first reaction was one of relief – but it was short-lived.

“The surgeon told me, there is no cure, they don’t know what causes it, and there are few effective treatment options. At 19, when I heard for the first time that there was a high chance I would be unable to have children, it didn’t really register as something real,” Kat says.

‘Debilitating, crippling pain’

Kat was prescribed medications and made lifestyle (diet and exercise) changes, but at age 28, the endometriosis was so bad, she was missing work and university.

“A flare up comes from nowhere. It leaves you bent over in debilitating crippling pain and can last, in my experience, anywhere from two seconds to two weeks,” Kat says.

Finally, at age 28, medical imaging with an experienced sonographer revealed Kat’s ovaries were covered in endometriosis cysts and lesions to the point where “they were stuck together around the back of my uterus, strangling it.”

Kat underwent two surgeries to remove endometriosis. One of her fallopian tubes had to be removed, because it had become invaded by endometriosis. Kat’s surgeon told her she should consider trying for children “sooner rather than later” to have the best chance of fertility.

Within a year, Kat and her partner fell pregnant with twins. Yet at nine weeks, came the devastating news of a miscarriage.

Devastating news

Kat and her husband got married in March 2015, but they were beginning to lose hope of ever having biological children. Kat’s remaining fallopian tube was now completely blocked, making it near impossible for an embryo to implant.

“There were a lot of tears and it was a long and difficult grieving process, but finally I felt like I would be okay whether I had children or not,” Kat says.

Finally, after returning from their honeymoon, Kat and her husband caught the first glimpse of not one – but two – beating hearts on an ultrasound.

Eva and Isabel Joseph, born 6/6/2016.

“Even though it was a high-risk pregnancy, it was the most glorious 34 weeks and two days of my life. I ended up with not one but two healthy, happy babies,” Kat says.

Kat knows her journey with endometriosis is not over. She wants to see greater awareness and importantly, medical research to help the one in three women with endometriosis who also experience infertility.

“We need more funding for medical research into relevant areas such as prevention, cure and treatments so that other women don’t suffer as much and can be diagnosed earlier,” Kat says.

Jasmine’s story

Jasmine started experiencing severe period pain as a teenager and endured five years of pain before she was diagnosed with endometriosis. Her journey continues.

“Sometimes I wake in the middle of the night because of the pain. I usually can’t stand up or walk for very long periods of time without experiencing endometriosis pain,” she says.

Despite presenting to her doctor with symptoms at age 16, endometriosis wasn’t diagnosed until Jasmine was 21, when a GP referred her to see a gynaecologist for a laparoscopy. The surgery revealed that she had endometriosis, which had caused her appendix to become stuck to her abdominal wall.

“When the surgeon confirmed that I had endometriosis, I cried because I was so relieved to finally have an answer,” Jasmine said.

In women with endometriosis, the amount of the disease present in the pelvic cavity does not always correlate with the severity of their symptoms. While Jasmine has small deposits of endometriosis, this causes her to experience severe symptoms, including sciatic pain (nerve pain), back and pelvic pain.

The 26-year-old law graduate from Melbourne is planning to have a third laparoscopic surgery for endometriosis next year, which she hopes will ‘tide her over’ until she and her husband decide to have children.

“I am hoping endometriosis will not affect my fertility, as it does for around 30 per cent of women with the disease,” Jasmine said.

Jasmine would like to see change when it comes to endometriosis, particularly increased awareness, education and early diagnosis.

“I would love to see early diagnosis. I heard the average time is eight years, which is ridiculous. Increased awareness would also be great, I think it would help a lot of women if endometriosis was widely acknowledged as a chronic disease, similar to arthritis or asthma,” Jasmine says.

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