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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Evelyn’s story

‘Invisible illness’ took years of pain and a trip to the emergency ward before diagnosis.

It wasn’t until Evelyn’s debilitating symptoms started to impact her daily life that she sought help – but that was only the beginning of her journey.

“It all came to a tipping point in 2016, when my menstrual cycle was impacting my whole life, with horrible pain, fatigue and dizziness that left me bed-ridden and barely able to walk,” Evelyn said.

Evelyn saw several doctors who she says either prescribed a supplement to help with her menstrual cycle, attributed the pain to inflammation due to a virus, or didn’t investigate further.

The 34-year-old communications professional says that advocating for her own health was instrumental. “I had to advocate for myself to get a diagnosis and trust my own body to know what was right and what wasn’t,” she said.

After a presentation at the emergency department, Evelyn had a transvaginal scan that led to a diagnosis of deep infiltrating bowel endometriosis. Deep infiltrating endometriosis is a form of endometriosis where tissue that normally lines the uterus is not only found outside of the womb – it also spreads through the lining of the pelvis or other tissues to infiltrate ligaments, the bowel or bladder.

Doctors told Evelyn that, based on the severity of her symptoms, the disease had most likely been present in her body for 10 to 15 years. There is no early diagnostic test that tests for all types of endometriosis.

Evelyn is grateful for the care she has received from top endometriosis experts in Melbourne, and the support from “my wonderful husband who accompanied me to every appointment, scan and support group meeting”.

“When I was initially diagnosed, I felt overwhelmed, but having the support of my medical team and reaching out to other women with endometriosis has made me very hopeful that I can manage the disease, have a full life and not be defined by it,” she said.

Evelyn says one of the most challenging things about having endometriosis is speaking out about this ‘invisible illness’. “Having an invisible illness that deals with the topic of menstruation makes it difficult, at times, to express to other people what you are going through. Just because you ‘look’ well, doesn’t mean you are feeling well,” she said.

She is hopeful that treatment and diagnosis for endometriosis will improve in her lifetime. “For a condition that affects 1 in 10 women worldwide, I believe there should be a greater urgency in the funding sectors to make endometriosis a curable disease and to make women’s health a top priority.”

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Bianca’s story

Bianca had the worst case of endometriosis her doctors said they had seen. Yet, she had no pelvic pain and was only diagnosed after experiencing infertility. She now wants to raise awareness so that other women don’t suffer.

As a teenager, Bianca felt a “heavy pulling, like a brick in her uterus” during her menstrual cycle. When she started taking the oral contraceptive pill, her symptoms disappeared for 10 years.

It wasn’t until she began trying to fall pregnant in her mid-twenties that Bianca began to question why she and her husband were having trouble with fertility.

A fertility specialist suspected that Bianca might have endometriosis, which causes infertility in around one third of the women it affects. A diagnostic laparoscopy confirmed the presence of stage IV (severe) deep infiltrating endometriosis.

Endometriosis had completely changed the anatomy of Bianca’s pelvic organs – lesions and cysts had become stuck to her bowel, bladder and ovaries.

“I was told by my doctors that it was the worst case of endometriosis they had ever seen,” Bianca said.

Bianca was shocked – she had no pelvic pain and infertility was her only symptom since her teenage years. Bianca had surgery to remove the endometriosis lesions, but soon after she began experiencing paralysing pain in her neck and shoulder that strangely corresponded with her cycle.

While endometriosis usually affects the pelvic organs, in rare cases, it can be found in other parts of the body. Keyhole surgery confirmed Bianca had diaphragmatic endometriosis that had spread across her torso. This was aggravating a nerve, triggering the pain in her neck and shoulder.

A further operation was required to remove one of Bianca’s ovaries, which was no longer functioning due to the severity of the disease. Endometrial cells had also infiltrated her ureter, blocking the passage between the bladder and one kidney. She had to undergo a ureteric reconstruction to restore normal function to her kidney.

“People associate endometriosis with period pain or pelvic pain – but it’s so much more than stomach cramps. I nearly lost a kidney, and I was close to requiring a bowel resection due to endometriosis. This is not just about period pain. It’s just horrific,” Bianca said.

Since the operation, Bianca’s pain and life have improved. She believes women should have access to an early diagnostic test for endometriosis and a range of effective treatment options.

“Early diagnosis is just so critical,” Bianca said. “We need treatments other than surgery – every woman’s experience is different. There’s an urgent need to create progress for endometriosis through medical research.”

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