March is Endometriosis Awareness Month and Nicky Lingwood, a Personal Trainer officially diagnosed with endometriosis in 2013, spoke to OTB Sports about the difficulties of trying to maintain an active lifestyle with the condition.
Endometriosis really fucking hurts.
“Imagine the world around you in full colour,” one sufferer awaiting diagnosis explains. “Then this darkness, this absolute kind of blackness just closes out all that colour and you’ve got this feeling of a fire burning in your stomach.
"That’s pretty much endometriosis for me.”
All while you sit on a bus going to work, or, worse still, actually try to do your job.
Irritable bowel syndrome. Coeliac or Crohn’s disease. Women’s problems. A “bad” period.
For most patients presenting symptoms of endometriosis – chronic inflammation, abdominal pain, fatigue, cramps – it becomes a case of having to first rule out every alternative diagnosis. Before a surgical incision actually identifies extraneous endometrial tissue growing outside of the uterus wall, it is not possible to diagnose the issue.
Brutally, this often results in patients having to endure excruciating physical pain while doctors, no more certain of what is wrong than the patient, openly wonder if there is not something more ‘psychological’ the matter.
“You’re made feel like you’re exaggerating, like you’re crazy,” explains Nicky Lingwood, a personal trainer living with endometriosis. “When you’re explaining what you’re feeling, doctors look at you like, ‘No, that can’t possibly be happening.’
“But it was the pain that eventually pushed me to fight for the diagnosis. Funnily enough, I read some piece of research recently that suggested women with endometriosis have heightened pain receptors, that we feel pain more easily.
“It is the absolute opposite. If I could put the pain I feel in someone else, they would be in A&E every other day.”
Physically debilitating and mentally exhausting, endometriosis, an ultimately incurable and random condition that afflicts one in ten women, really fucking hurts.
The Endometriosis Association of Ireland does not know of any high-performance female athlete in this country currently living with the condition.
Statistically anomalous, Lingwood, who was officially diagnosed in 2013 after five or six years of undeterminable pain and numerous consultations, is living proof of the difficulties one has pairing an active lifestyle with the unpredictability of endometriosis.
A personal trainer with two decades of experience, the severity of her condition has had a tangible impact on her career.
“It got really embarrassing,” she admits of working in a gym when her symptoms first emerged around 2007, “trying to explain, ‘Oh, women’s problems…’”
Setting out on her own, she tentatively talks about her good fortune at now having a list of clients willing to work around her schedule. Although the pains of endometriosis strike independent of the menstrual cycle, it will often intensify during menstruation.
“On the first three days of my cycle I’m going nowhere,” she says, “not even for a walk.
“There will be days then when I literally have to crawl out of bed, go teach a session, crawl back to bed for a couple of hours, teach another session, pop some pills, teach another session…”
Although certain treatments can alleviate the suffering, endometriosis ultimately has no cure. For many, the condition cruelly becomes an additional factor in how one’s life is lived.
Booking a holiday, attending a friend’s wedding, or even what colour leggings she can wear when teaching a class, no decision is so trivial that Lingwood will not wonder what shape she might be in.
And yet, her ability to objectively function as if nothing is wrong highlights what is particularly menacing about endometriosis. Even after going through the rigmarole of being diagnosed, life does not bend to her necessities.
She engages in a silent struggle with her own body because, well, what other choice does she have?
While Olympic and Paralympic athletes have publicly shared experiences similar to Lingwood’s, the question of how one can perform in elite level sport remains perplexing. As these athletes have explained, some solace can be found in communities of similarly placed people.
This conversation appears less advanced among female athletes in Ireland.
On numbers alone, some asymptomatic athletes will only learn that they have endometriosis as fertility issues arise if they decide to try and become pregnant. Then there will be those who endure the pain but are unsure what the source of it is, or if it is even abnormal to begin with.
Finally, there will be those athletes knowingly performing with endometriosis but unwilling, uninterested, or perhaps uncertain whether it is something to talk about.
“It’s like admitting you’re weak,” suggests Lingwood, alluding to the hyper-masculine world of elite sport, “but also admitting that you’re female.
“I think that’s still an issue in sport generally. I find as a PT that I have to try hard sometimes to convince females to train as a female – some don’t want to hear that.
“I don’t think some women want to say that out loud.”
“You have little acts of sexism happening in sport all the time,” Cork camogie star Laura Treacy told OTB Sports last year. “If you address all of them publicly though, I mean, nobody wants to come across as always being negative.”
For a number of female athletes, progressing towards equality depends upon a dogged willingness to keep talking, to keep pointing out where the issues exist. As with the systemic sexism of sporting institutions, endometriosis tasks sufferers with a similar challenge.
Again and again and again, perhaps from as early an age as when the menstrual cycle begins, one is told that what they are experiencing is illegitimate, or even illusory.
“I’ve literally been in A&E where they’ve overdosed me with painkillers,” recalls Lingwood of the continued inability in many medical quarters to recognise or treat endometriosis.
“I stayed on a trolley overnight and they pumped me full of drugs. Then they gave me this baggie of pills and told me to take as many as I need to be able to get up in the morning and check into The Coombe [Hospital, the leading treatment unit of gynecological issues in the country.]
“So, I took a couple of pills before going to sleep, took a couple of pills in the morning to get dressed and I had to lie down in the back of the car while I was driven to the hospital – I took a few pills then too.
“By the time I got to The Coombe I was practically hallucinating. ‘What the hell have you been taking? How many did they tell you to take?’ That all led to my bowel shutting off and I ended up spending five days in there.”
Objectively, Nicky Lingwood is a fit and healthy 42-year-old personal trainer. She is a mother, a partner and an incredibly engaging person to talk to. Awaiting a fourth surgical procedure to temporarily alleviate the suffering, it is clear though that endometriosis has exacted a toll on her life.
Since receiving her diagnosis eight years ago, however, she insists that acknowledging the condition aloud has proven beneficial.
After a lengthy quarrel in the darkness with an unspecifiable pain, she wants to shine as bright a light as possible on endometriosis.
If you are looking for any further information or assistance please visit the Endometriosis Association of Ireland's official website here