Paralympic swimmer Monique Murphy spent years battling an insidious enemy within her own body that consumed her with crippling pain and made her question her sanity.
And she’s determined to ensure other women — athletes in particular — don’t have to engage in the same agonising fight against endometriosis.
“I think it is common that people think you get cramps, you get pain and bleeding, you’ll be okay,” the 26-year-old said.
“And if it’s a recurring theme, it’s not okay. We need to change that way of thinking. We’re not doing our female athletes any good right now.”
Six years ago, Murphy fell from a fifth-floor balcony at a university party — the result of a suspected spiked drink.
She spent a week in an induced coma after suffering multiple injuries including a broken jaw, collarbone and ribs.
Her right leg was amputated below the knee.
But the worst pain she encountered in the aftermath came from her then-undiagnosed endometriosis — an incurable disease where tissue similar to what normally lines the uterus grows in other parts of the body.
“And all the doctors at that time were telling me that was completely normal and my body had been through trauma, and it was just recovering and it was going to be an up-and-down journey.”
But as QENDO (Endometriosis Association in Queensland) states, “period pain that stops you from doing your normal daily activities and cannot be managed with simple over-the-counter pain medication is not normal. It is not a part of being a woman”.
Medals valued over everything
It took Murphy five years to receive her diagnosis, and she was one of the lucky ones.
One in 10 women have endometriosis and face an average of seven to 10 years looking for a diagnosis because of a lack of knowledge and research around women’s health, as well as the normalising of symptoms by patients and doctors.
According to Murphy, who ascended to the Australian Paralympic swimming team soon after her accident, this is exacerbated in an elite sporting environment where the vast majority of coaches are men.
And she says women’s health issues — particularly anything related to periods — are often downplayed or ignored.
“[In] that high-performance environment, we are told time and time again that it’s the medals that count and we’re here to win medals.”
Despite experiencing serious symptoms at the Rio 2016 Paralympics, Murphy still managed to win a silver medal in the 400m freestyle S10.
But the condition was taking its toll and it flared up again at the 2018 Pan Pacific Championships.
“I swam very, very poorly. I had this nerve pain or what felt like nerve pain all the way through my left leg, all the way down to my toes. In one race it got so bad that I had to stop kicking, because I felt like I was getting paralysed,” she said.
“We were trying acupuncture, the doctors were giving me Buscopan, and it was all an approach to just get you through the race. It was like, ‘oh, you’ve just gotten sick before a competition, we’ll just get you through the next 24 hours’.
Women’s health not prioritised in many sports
Murphy’s experiences are not unique, and highlight some broader flaws within the sporting environment, particularly Sports Science Sports Medicine (SSSM) structures.
SSSM practitioners include sport and exercise physicians, physiotherapists, dieticians, strength and conditioning coaches, psychologists, data analysts and more.
Kate Mahony is a physiotherapist and the Head of Performance Health at the NSW Institute of Sport.
She recently completed a Churchill Fellowship looking at best practice SSSM care of the female athlete around the world and found it lags behind the support available to male athletes, from the grassroots through to the elite level.
“I think sometimes there’s not much thought put behind what different resources might these athletes need to make sure they are at their best,” she said.
“And sometimes it’s as simple as putting aside some funding for the female program to refer external to get help from a pelvic floor physiotherapist, or to go and see a specialist like an endocrinologist for menstrual dysfunction.
“Just being able to pull the right people into the system to make sure our athletes do have the right people around them to help them be as healthy as they can.”
Many of the SSSM practitioners within women’s sports are only employed for several hours a week, not giving them enough time to adequately treat athletes, and they’re often getting paid less, pro rata, than those fulfilling the same positions in men’s teams.
It means some women’s sides employ early-career clinicians willing to make those sacrifices to gain experience, using it as a stepping stone to the better resourced and funded men’s programs.
Even in Olympic and Paralympic sports where SSSM services are distributed more equally amongst the men and women, there are still shortfalls.
Dr Rachel Harris is the chief medical officer for Paralympics Australia and Water Polo Australia and has been leading the Australian Institute of Sport’s female athlete performance and health project, specifically looking at menstrual health and hormonal contraception.
“There has been less focus on some of the female athlete health resources that you can get,” Dr Harris said.
“So we haven’t ever done anything like [menstrual] cycle tracking, for example, in female athletes. And that’s something that we’re trying to bring in with our project, we need to start putting more of a focus onto those things.
“We need to increase the amount of research that we’re doing into female athlete health … for the betterment of both performance and health for all of our athletes.”
Would leadership and education make the difference?
Last year, Murphy finally found a doctor who confirmed she had endometriosis, but she still had to get a formal diagnosis, which is only achieved by a laparoscopy.
She found it confronting to discuss the surgery with her all-male coaching staff, but after it was complete, a huge mental burden was lifted.
“It wasn’t in my head, it was something in there, there was something that was wrong. And it’s not because I’m not strong enough, and it’s not because I don’t have the ability to put things aside and race hard when it counts,” she said.
“There was something that my body was doing that wasn’t right that needed to be addressed and that’s OK.”
After returning from her surgery, she was frustrated by a lack of support from her mentors and, knowing there would be more operations in her future to manage the condition, she decided to move to Brisbane to train under a female coach.
Just 9 per cent of accredited coaches on the Australian 2016 Rio Olympics team were women, and the SSSM system is also dominated by men.
Dr Harris wants to see that gender imbalance addressed, whilst also educating the men within sporting structures.
“It’s difficult for the communication to go from those female athletes to those male coaches. Female athletes find it more challenging to discuss menstruation or incontinence or breast pain with a male practitioner, so there are certainly things that we need to look at,” she said.
“How do we help facilitate the communication and the conversation between our athletes, our coaches, our practitioners to normalise the things that females go through all the time?”
Murphy agrees it is crucial for young girls in particular to feel comfortable opening up about their health, so they’re not lost to sport when they reach puberty.
“I know I was mortified when my dad told my coach that I’d gotten my period, and I didn’t really want to go back to the pool for a while. So [we need to] really open up that discussion and make it something that we don’t have to be ashamed of,” Murphy said.
Kate Mahony wants to see participants brought up to speed too.
“The athletes often aren’t aware that some of these conditions they suffer are actually really normal, as in, they exist at a high level in the female athletic population,” she said.
Murphy is concerned that endometriosis may be more prevalent amongst athletes.
She knows of six athletes in her friendship circle that have the condition and has counselled many teammates who’ve experienced similar symptoms.
But she wants coaches to take more accountability, so she has teamed up with Olympic swimmer Madeline Groves and QENDO to design a training program which they hope to deliver to sporting organisations.
“If we turned up [to training] with a runny nose or a cold and we weren’t well, your coach would say you need to see a doctor. They would acknowledge it for what it was. And I would like to see that in the same way with female health,” Murphy said.
“If a swimmer comes to training or any athlete, and they’ve got cramps or pain or any kind of symptom, your coach needs to go, ‘alright, this has been an issue for the past few months, you need to see a doctor for your period, because painful periods are not normal’.
“I think if we can do that we’ll see athletes staying with the sport a lot longer. Because it’s not something they’ve got to suffer through and it’s not something they have to be embarrassed about, and we could see careers flourish a lot more than they have.”