Endometriosis, defined as the presence of endometrial cells outside of the uterus, is one of the most prevalent diseases in existence. It is thought that around ten per cent of women of reproductive age have the condition which means there are approximately 700 000 sufferers of the disease in Australia and over 170 million worldwide.
Just like endometrial lining within the uterine cavity, endometriosis cells replicate and grow during the proliferative and secretory phase of the menstrual cycle, then break down and bleed when menstruation occurs. The most popular theory of its cause is retrograde menstruation whereby menstrual blood escapes from the ends of the fallopian tubes and implants in the pelvis. However, this doesn’t explain the occurrence of endometriosis in rare sites such as the lung, brain or skin, and it is likely that altered immunity, aberrant hormonal signalling and genetic factors also play a role.
In addition to dysmenorrhea (pain during periods) endometriosis sufferers can also experience constant pelvic pain, dyspareunia (pain during sex), infertility, and pain on urinating and defecating.
“Endometriosis is as common as asthma but we know very little about it,” Gold Coast-based fertility specialist and laparoscopic surgeon Kee Ong says. “Across the whole spectrum, from the patients to doctors, awareness of this condition is pretty poor.”
For many women, obtaining a diagnosis of endometriosis can be a long and difficult journey. “I’ve said to my husband many times, if this was a man’s disease, they would have done the research on this at least 30 years ago. But because it’s a woman’s disease, we just get told that it’s normal and put up with it,” says Brisbane nurse Katrina Sparke, 35, who cannot recall a single pain-free day since she commenced menstruation at the age of 12.
A major roadblock to diagnosis is the fact that surgery, in the form of a laparoscopy, is the only definite method. “A normal ultrasound does not exclude endometriosis,” said Ong. “We’re not saying that everyone needs to have the surgery, but people need to be more proactive in thinking that possibly endometriosis is the problem.”
Women in Australia often experience a delay of seven to 12 years between the onset of symptoms and a correct diagnosis being made, and many women will be unaware that they have endometriosis until they start trying for a baby. This is because progesterone, a hormone present in most forms of contraception including the oral contraceptive pill, implanon rod and the mirena intrauterine contraceptive device, will often dampen the growth of endometriosis.
This was the case for Kristy Tunbridge, 42, from Mudgeeraba, Queensland, who was on the pill from the age of 14 to 38.
“When I was on the pill the pain was masked,” Tunbridge said. “But when I came off it my periods became more painful.”
After a year and a half of trying to fall pregnant Tunbridge was referred to a fertility specialist who performed a laparoscopy.
“I was covered in endometriosis,” she said.
Up to 50 per cent of women with endometriosis will experience difficulty in falling pregnant.
“A large proportion of women that I see who are struggling with infertility end up having endometriosis,” said Ong. “If they want a baby, they need to be proactive.”
Surgery to remove the endometriosis can greatly increase the chances of falling pregnant, but only for a small window of time. “Research has shown us that women with endometriosis have a better chance of falling pregnant by themselves in the first four to six months after surgery,” said Ong.
Tunbridge was fortunate to fall pregnant after her initial surgery for endometriosis though many aren’t so lucky.
Sparke’s journey was just beginning upon her initial laparoscopy.
“My first surgeon said he couldn’t remove all the endometriosis because I could be risking organ damage, so I found another surgeon who could,” Sparke said.
Once her endometriosis was fully removed, Sparke tried several rounds of IVF but was unsuccessful. In desperation, she had a third laparoscopy which removed newly-grown endometriosis, and, following further IVF, Sparke is now pregnant with twin boys.
Others are unable to have children no matter how hard they try. Queensland Premier Annastacia Palaszczuk is open about her long struggle with endometriosis which left her infertile. And American writer and actress Lena Dunham underwent a hysterectomy in 2018 at the age of 31, despite being childless, after suffering years of disabling pain due to endometriosis.
Obstetrician and gynaecologist Luke Waldrip says that it is a commonly held myth that a hysterectomy alone will cure endometriosis. “It may help some with their pain, especially during menstruation,” he said. “But as long as the ovaries are releasing oestrogen, which they will until menopause, endometriosis can still grow.”
In response to pressure from patient advocates and clinicians across Australia, the federal government released a national action plan for endometriosis in July 2018. The plan announced $2.5 million funding for the Medical Research Future Fund and $1 million for education and aims to increase awareness, improve clinical management and increase research for endometriosis.
Sparke says the changes cannot come soon enough. “Endometriosis is a lifelong condition that can be completely debilitating. It can affect your sex life, your marriage, your mental health and your fertility,” she said. “It is so important to get the word out about endometriosis so that girls can actually get an early diagnosis which will change their entire life.”
Related policies, strategies and publications
- The National Action Plan For Endometriosis 2018 outlines strategies to increase awareness, improve clinical management and increase research for endometriosis
- The long road to diagnose endometriosis
Suvi Mahonen is a Surfers Paradise-based journalist. Her work appears in The Australian, HuffPost, Mamamia and other health and lifestyle publications. Follow her on Facebook and online art-selling platform Redbubble
Photo credit: Sydney Sims