At least one in 10 New Zealand women suffer every month from endometriosis. NZ cycling champion Kirstie Klingenberg (nee James) talks to Suzanne McFadden about the diagnosis that changed her life, and her work to help other female athletes with the insidious disease.
Kirstie Klingenberg can vividly recall the excruciating pain that almost sent her over the edge.
The World Cup champion was at home in her Cambridge kitchen with her partner, Michael, when an intense stabbing down the right side of her belly floored her.
“My now-husband was like ‘That’s not normal; there’s something really wrong’. And I was like ‘No, no, I’m totally fine… just give me a minute’,” Klingenberg, nee James, remembers.
“I thought I’d torn my hip flexor, so I drove to the physio hunched over and sweating with the pain. But as I lay back on the physio table, the pain completely disappeared. I went from 100 percent pain to suddenly gone.
“I thought I was delusional; that I needed to see a psychologist because I’d gone crazy. I definitely thought I was crazy.”
For years, Klingenberg – a promising rower turned champion track cyclist – hadn’t made a fuss of the debilitating pain and fatigue she suffered once a month, even when she had no idea what was causing it.
“I thought as an athlete I better not complain about pain. That’s a massive part of being successful in sport – coping really well with being in physical pain. I thought ‘I can’t talk about my pain because then I’m weak’,” she says.
But it was taking its toll on her mentally and physically – there would be days when she couldn’t get out of bed, or she’d struggle through training or a 100km road race in agonising pain.
“On my good days I was exceptional, and on my bad days I could hardly move. My coach was like, ‘I can’t pick you because how can we tell when you’re going to go well? Your performance is like a rollercoaster’,” she says. “It had huge implications for my career.”
When she finally spoke up about her pain, she still had trouble convincing others that something wasn’t right.
After seeing four doctors, who all told her everything looked fine, Klingenberg asked to be referred to a gynaecologist. Within a week of that appointment, Klingenberg went under the surgeon’s scalpel.
The surgery revealed endometriosis and a cyst on her fallopian tube. “The cyst would tangle the fallopian tube and cut off the blood supply which was causing the pain. When I lay down, it untangled and it stopped,” Klingenberg says.
“Waking up in the recovery room, I lifted up my gown and saw four scars, and I was so happy because it meant I had endometriosis.
“Finally, I knew I wasn’t crazy.”
The four keyhole scars meant she’d had a laparoscopy – surgery to cut out all of the endometriosis they could see. It meant Klingenberg now had an explanation for the pain and suffering she’d endured once a month for years.
Four years on and Klingenberg, now 31, has never been stronger. The reigning national individual pursuit champion is on the verge of selection for next year’s Tokyo Olympics in the team pursuit, and she’s close to completing her Master’s thesis on athletes with endometriosis.
Her research has shown she’s not alone. At least one in 10 women around the globe have their quality of life affected – some severely – by endometriosis. Around 130,000 women have the disease in New Zealand.
And two of her team-mates in the New Zealand track endurance cycling squad have recently had surgery for it.
Deborah Bush, the CEO and founder of Endometriosis NZ, says the condition is still poorly understood – and poorly treated.
“The disease affects one in 10 so there will be women from all walks of life who have the condition. Australia published a study last year which showed one in nine – and recent thinking is that it’s likely to be more common than that,” she says.
Women are still waiting on average eight years in New Zealand to be diagnosed with endometriosis.
With ‘endo’, cells from the lining of the uterus end up in the wrong places around the body – usually in the pelvis, but it’s also been found in the lungs and eyelids. The cells continue to act like they would in the uterus, bleeding each month, and thick adhesions and ovarian cysts form when the body tries to overcome the irritating intruders.
The most common symptom of endometriosis is pain during periods. But some women are led to believe it’s normal to have painful periods, when it’s not.
Soon after that scene in the kitchen in 2016, Klingenberg figured out she had the symptoms of endometriosis. Her mum had suffered from it too.
“I had got progressively worse over the years, but because it was a slow progression, I just kept normalising it,” she says. “I was questioning am I getting weaker? Am I being a pansy?”
The surgery, Klingenberg says, was life changing, and it’s changed her career path too.
“After recovering from surgery, I had the most consistent training blocks of my career. And since then I’ve gone from strength to strength,” she says.
In 2017, Klingenberg was part of the New Zealand team pursuit quartet who won bronze at the world track championships in Hong Kong. They repeated that at last year’s world champs in Poland.
She also won team pursuit silver at the 2018 Commonwealth Games on the Gold Coast. And now she’s on track to ride at her first Olympic Games.
Since her diagnosis, two of her team-mates have also undergone surgery for endometriosis. Holly Edmonston, who with Klingenberg won World Cup gold in the team pursuit in Cambridge in December, had her surgery soon after.
Klingenberg has had a “90 to 95 percent reduction in pain” since having her operation and getting a Mirena – a hormonal intrauterine device that can help with endometriosis. “I get the pain at random times, but compared to what it used to be, it’s pretty mild,” she says. “I know I’m pretty lucky.”
She’s no longer quiet about her condition either, and is an ambassador for Endometriosis NZ.
“It’s important to get the word out. It would have been such a relief as a younger athlete to be told it wasn’t normal to be doubled over in pain,” she says.
“I remember one of my coaches saying: ‘Oh she can’t do that because she has a womanly problem’. That language is so disempowering. We need them to say uterus, say period, say ovaries!
“The more we talk about it, the less taboo it becomes. We should be empowering and educating the male coaches on how to approach these conversations, rather than avoiding them.”
That’s where Klingenbergs says the New Zealand female endurance squad have an advantage. She says their coach of the last two years, Ross Machejefski, is a “leader in women’s health” in cycling, and that’s proved to be a cornerstone of the team.
“You can tell him anything. He’s not afraid to speak to us about the specific women’s health issues that affect our sport, like endometriosis, periods, under-fuelling and training during your menstrual cycle,” she says.
Speaking from the centre of the Avantidrome in Cambridge, Machejefski says keeping an open mind and a keen ear has helped him understand his riders’ wellbeing, which has been key to their recent successes.
“I was with many of them when I was the junior coach, and we were dealing with all kinds of stuff as they were growing up. That’s made it easier to relate to what they’re going through now,” he says.
“You need to understand when to push and when to empathise. If the athletes are well supported and feel like they can talk to you, you will get more out of their performance, and when they are feeling good they will push harder. It’s been an interesting couple of years learning.
“With the three women in our squad who have had surgery for endometriosis, I’ve learned a little bit more from each one. Kirstie is the one whose surgery has had the biggest effect.”
This year, the squad has also been looking at the effects of RED-S syndrome – or Relative Energy Deficiency in Sport – another condition affecting the health of our female athletes.
“There are probably a lot of women suffering needlessly because of the lack of diagnosis” – Kirstie Klingenberg.
Essentially, when athletes don’t fuel their bodies sufficiently for the energy they’re burning, it can result in weaker bones and irregular periods, and later, fertility issues.
That’s another condition Klingenberg has been through. As a young rower (who went as far as the World University Games in 2012 before switching to cycling), she stopped having periods after training twice a day, six times a week, and suffered a stress fracture in a rib from constantly knocking the oar against it.
“I remember as a really young athlete seeing a sports doctor, and I told him I hadn’t had my period for 120 days and he said ‘Oh you women, you complain when you get it, you complain when you don’t’. And that was the end of the appointment,” she says.
“I realised years later that I was severely under-fuelling and my whole metabolism had shut down. That’s why I wasn’t getting periods – but because of my endometriosis pain, not having a period seemed like the best news ever.
“Now I have really good bone density – but a lot of women don’t, and they’re afraid to talk about it.”
Klingenberg is back on the track in Cambridge this week, after the squad took a two-week break. This is her first winter spent in New Zealand in a decade – she would usually be racing in a US pro road team right now.
She’s about a year away from becoming a Master of Science in Psychology, having put her studies on hold for the 2020 Tokyo Olympics. The question she’s trying to answer in her thesis is how endometriosis affects athletes’ stresses and what their requirements are.
“When you’re relying on your body to perform on a daily basis, it can be a massive stress when you can’t perform properly because you’re in too much pain, or you’re bloated, or you’re having cramps or vomiting. There are so many awful symptoms – it definitely affects the life of an athlete so much,” she says.
“I’ve talked to a lot of athletes who have endo or are suspicious of it. My team-mates’ journeys with diagnosis and surgery were fast-tracked after mine, which has been really good. One of the women on the Great Britain track cycling team has had surgery in the last year and she’s seen a massive improvement in her performance too.”
Klingenberg has started a Facebook group for athletes with endometriosis, aware there’s not a lot of information for athletes on the disease. “There are probably a lot of women suffering needlessly because of the lack of diagnosis,” she says.
Earlier this year, the Ministry of Health released the first ‘best-practice guidance’ for doctors to try to improve diagnosis and management of endometriosis.
Klingenberg encourages women to get moving and exercise even when they’re in pain. “Even if you can stretch or activate your muscles, it can increase blood flow and help with the pain,” she says.
“Having a supportive partner and family is really important too. Someone else to say ‘You’re in pain and this isn’t right’.” Like her husband did.
“I hope a young athlete will hear my story and say ‘I have endometriosis but I could still be a professional athlete one day’.”