Charlotte Henshaw: Paralympic champion on challenges of being an athlete with endometriosis

An athlete’s life is very structured: a series of careful plans, built around training, nutrition and recovery with a set goal in mind.

Para-canoeist Charlotte Henshaw, interested in untapping extra help in training, decided to attend a talk on menstrual health. She had switched sports from swimming in 2017 but had been dealing with pain and fatigue for some time already, having withdrawn from a Scottish swimming championship some years previously with pain that left her unable to get out of bed.

She had been to a doctor, who diagnosed irritable bowel syndrome, but still the symptoms came.

“I couldn’t find a place that was comfortable, I was feeling nauseous and getting burning pains during my period,” Henshaw tells BBC Sport.

“On a bad day, it was so debilitating I couldn’t do anything. On a good day, it was manageable.”

At the talk, Henshaw was encouraged to keep a log of her menstrual cycle.

“At this point, I started to notice that this pain was coming at the same point every month during ovulation,” she says.

“All of a sudden I had this diary of information that I could go back to a doctor with and go ‘this is something to do with my menstrual cycle, let’s explore that’.”

Despite all this, it still took another five years for Henshaw to be diagnosed with endometriosis – a condition where cells like the ones in the lining of the womb grow elsewhere in the body. It is a long-term condition with no cure, with symptoms ranging from severe pain to heavy bleeding.

Endometriosis UK states that one in 10 women will suffer with the condition, but it can take on average eight years to get a diagnosis. The delays in getting a diagnosis can be just as upsetting as the symptoms themselves, with a number of women finding the uncertainty over what is wrong can impact their mental health.

Henshaw underwent a laparoscopy in December 2020 to confirm the diagnosis and has since gone on the pill, which has helped her manage her cycle and her pain. However, there are a host of what she calls “weird and wonderful things” that still have an impact on her every month.

“[I can get] painful bowel movements and painful [hip] rotation which, in a sport like canoeing, is what I do hundreds of times a day,” she says.

“It was part of the reason why we desperately needed a plan, especially leading up to the Tokyo Games [in 2021].”

When Henshaw woke up from her procedure, the first thing she asked her recovery nurse was “did they find anything?” When the nurse said yes, Henshaw said she felt “complete relief” – not just because it was an answer to her long-held question but also so “people would not think I was making it up”.

As Henshaw acknowledges, planning is the tricky bit for athletes who like to control their immediate environment. Henshaw cannot predict when a flare-up will occur, or how bad the pain will be – “one day you feel fine and then the next you really cannot get out of bed” – but she wants to be as well prepared as possible.

A double leg amputee, Henshaw won KL2 gold at the delayed Paralympics in 2021, having previously won 100m breaststroke SB6 silver and bronze at the 2012 and 2016 Games respectively. She knows what it takes to compete and win at the top level – particularly in canoeing, where her British team-mates are often her direct competitors.

“I have learned that just because you are here and physically present at training does not mean that it is an effective day of training,” she says.

“Thoughts cross your mind of ‘I wonder what such-and-such is doing today and I’m sitting in bed not being able to move’ – but it would not have been an effective training day anyway.

“Is it better to take that time to recover and get your body as good as it can be and not force it through training that day? I think that’s a learning curve.”

An athlete’s body is their livelihood. It is the key to winning medals; it can be the deciding factor in whether or not you get funding for the next Paralympic cycle. Henshaw says she struggles with health anxiety and remembers the period of time where she was in pain and no test could produce an answer as the hardest for her.

She credits social media with helping her understand her endometriosis, by swapping messages with other Instagram users to hear their experiences and how they managed symptoms. Henshaw has found that heat packs, acupuncture, painkillers and rest help her – “some days it doesn’t work, some days it’s fine”.

She is aiming to compete in her fourth Paralympics in Paris next year and says: “If I happen to wake up on the final day of a Paralympic Games and I’ve got a horrific flare, we need to know how to deal with that.”

Henshaw also says growing up with a disability helped her develop a different perspective on what people are going through. She was born with bilateral tibial hypoplasia, meaning her legs were underdeveloped and were subsequently amputated above the knee when she was 18 months old.

“What people are going through is not always as obvious as a pair of legs lying on the side of the pool or the lake,” she adds.

“I don’t think that understanding is there particularly, especially with something like endometriosis, which is universally thought of as painful periods.

“It is not that – and I think the more people understand that, the more empathetic they can be.”