In Her Head is a Herald project to help women get better medical care. Health reporter Emma Russell investigates what's wrong with our current system and talks to wāhine who have been made to feel their serious illness is a figment of their imagination or "just part of being a
In Her Head: Women's health - Ex Olympian Kirstie Klingenberg's endometriosis battle
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Kirstie Klingenberg says she didn't speak up about her agonising pain for years out of fear her coaches would think she was weak. Photo / Getty Images
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She wanted to share her story as part of the Herald's In Her Head project in the hope of removing the disease as a barrier to becoming an athlete. She also wanted to help build more understanding about endometriosis, which affects at least one in 10 women, so people didn't wait years for a diagnosis.
Klingenberg said she struggled to remember when she first started experiencing symptoms because for so long she normalised her pain and put it down to bad periods.
"I thought it was normal to be in that much pain because no one talked about period pain or any kind of menstrual difficulties."
She saw several different doctors over the years but each one told her there was nothing wrong with her, she said.
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"It takes a huge toll on your mental health because when people of power tell you that you're making it up or that you're being dramatic, it reinforces this belief that I have no say. I started to think I was being dramatic or crazy," Klingenberg said.
Some days she couldn't get out of bed but most of the time she pushed through the pain. She remembers the torture of competing in a 100km elite cycling race in Taupō with severe pain and how it nearly pushed her over the limit.
"I woke up that morning with close to 10/10 pain and I had to get on my bike and race and it was just the most horrendous experience because I felt like I was going to pass out from the pain," Klingenberg said.
She said she felt like she had no choice but to race. However, looking back, she wished she'd listened to her body.
"You are actually going to get nothing out of smashing yourself in high levels of pain for 100km, because it took me a week to recover from that. Your whole nervous system is on overdrive when you're in such serious levels of pain, which gives you extreme fatigue," Klingenberg said.
Not knowing she had endometriosis had a massive impact on her cycling career, she said.
"When I was feeling good, my performance was great, but when I was in serious pain it was terrible. My coach would say 'I can't pick you because your performance is like a rollercoaster and it was", she said.
It wasn't until halfway through her career she learnt about endometriosis and had an inkling it could be the cause of her suffering.
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After being told by a fourth doctor there was nothing wrong with her, she requested to see a gynaecologist. Luckily, she was able to see one swiftly by paying to go private instead of waiting months, possibly years, going through the public system.
Within a week of her specialist appointment, she had surgery, which confirmed 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," she said.
The surgeon was able to cut out the endometriosis and the cyst, so she no longer had to live in pain. When she woke up from the operation, she said it was like a weight off her shoulders because she finally had proof her suffering wasn't all in her head.
Now, five years on from the surgery, she felt better than ever, and was near completing her master's thesis on athletes living with endometriosis.
She's interviewed nine elite athletes with the condition and found all had similar experiences to hers.
"They all went through this period of not knowing they had endometriosis and minimising or normalising their pain, before they got to a point when they realised it wasn't normal."
Eventually all the women she interviewed went on to have surgery. It led to dramatic improvements for some, while others continued to experience pain for reasons unknown.
"It's really important that we listen to women living with endometriosis. There's a lot of rich learning that we can gain from that."
While there had been some instrumental voices within sports building understanding about specific women's health issues and encouraging athletes to talk about their menstrual cycle, Klingenberg said better education was needed across the board.
"I hope my story can help prevent others from spending years in pain."
About endometriosis
Endometriosis is a condition in which tissue normally lining the uterus grows either on the ovaries, fallopian tubes or intestines.
Women with the illness can be left in severe pain and experience heavy bleeding. In some cases can become infertile.
At least one in 10 women live with the condition but many wait years, if not decades, to be diagnosed because it's often dismissed as "part of being a woman". The longer it's left untreated the worse it gets.
Surgery is the only way to diagnose endometriosis. Depending on the severity of the disease, it can be removed during that operation and managed with birth control pills. Removing the ovaries or uterus is sometimes recommended where symptoms have significantly affected the women's quality of life.
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