The plastic surgeon, in that particularly endearing way of surgeons, was trying to reassure me that although he had never operated on an endurance cyclist before, he had seen “presentations” like mine. “I’ve seen chronic inflammation and long-term trauma to the vulva like this. You know …” he paused, “in patients who compulsively rub up against bedposts.” Silence.

I decided against explaining that the relationship with my bike saddle did not, perhaps, deserve to be in among the psychiatric cases in his cognitive filing system. However, he had a point. While there is no love lost between me and the necessary evil that is my saddle, I have continued to train, despite huge amounts of destruction to my body, pain and trauma.

In my case, being a professional cyclist could be seen as a form of madness. I’m the fourth best trike racer in the world. I train every winter and race every summer with a mission to win medals. After I came fifth in my first Paralympics in Rio in 2016, I stopped getting funding from UK Sport, the government agency that invests in Olympic and Paralympic sport so, technically, I race for free (there is no prize money), with the prospect of the next Paralympics dangling in front of me. If not for the financial support of my racing team, Storey Racing, crowdfunding, ceaseless grant-hunting and my never-ending harassment of the general public, I would not be able to carry on.

Mostly, my race costs are covered, but I struggle to pay my rent. Cycling is my labour of love – I just didn’t realise what a literal pain in the ass and more it would turn out to be.

In winter 2018, I reached my pain threshold for the fifth year. Finally I sought advice.

This is easier said than done. I am off programme right now, which means that, like most female road cyclists, I don’t have access to the medical advice the official British Cycling body has to offer. Luckily, as I grew up in Glasgow, the Scottish Institute of Sport has medical care I can access – if I were English I would be reliant on the English Institute of Sport of which British Cycling is the gatekeeper. I would be stuck.

Your regular general practitioner will be flummoxed by any chronic saddle complaint. On top of that, evidence-based healthcare needs research to work properly and there is none. There is nowhere for individuals to go and nobody has ever systematically and scientifically documented the problems women on the saddle can face, at least in a form that medical practitioners can access, though a quick online search brings up too many unhappy stories to count.

Finally, in November, I found Phil Burt, the former head of physiotherapy at British Cycling, who runs the world’s first multidisciplinary saddle health clinic in Manchester. He said my swelling was too bad for his preventive methods in which riders sit on a pressure-mapping saddle to visualise problem areas as they pedal. My only option was surgery.

Dines on the road in the UCI Para-Cycling Road World Championship, Switzerland. She argues that the shape of the saddle and modern bikes force the body into a position that can create friction injury. Photograph: Christopher Lee/Getty Images for British Cycling

When should I have sought help? At the first sign of swelling? That was when I was a potential talent trying out for the British Cycling team in 2014, staring at the large amount of skin and hair that had just sloughed off my vulva in a hotel bathroom. Fortuitously, I was on the toilet at the time. This is not as painful as it sounds: if you dry out too much down there due to chafing, this is generally what happens. I wish I could time travel and yell “chamois cream” at myself. British Cycling gave us great kit – nice shorts, shoes, gloves, but no anti-abrasion ointment, no medical chat about the dangers of chafing our cha-chas out of existence. The message was: show weakness and you’re out. I pulled up my knickers and flushed it all away.

While valuable parts of the male genitalia can be moved out of the way, female cyclists sit right on the money

The consensus is that when you first start cycling on your good-as-new, unbruised foof, it is going to hurt. After a “breaking-in” period, the pain-to-numbness ratio becomes favourable: as long as you protect against infection, wear padded shorts with a generous layer of chamois cream, no underwear and make regular offerings to the ingrown hair goddess, things are manageable. This is wrong.

I would say there is a hierarchy of injury from the easiest to alleviate to the direst of consequences. Chafing and dead skin: chammy cream. Infections, saddle sores, ingrown hairs, open wounds and blisters all come as quickly as they go. If there is any pus, remove it and let the wound breathe – no sweaty plasters.

Then there is chronic swelling without surface infection, which is what I have. This can be caused by a number of things: lymphatic damage, compressed tubes, necrotic fat buildup, assorted gland conditions or even all of those, due to cancer.

By my second year in the saddle, my injuries were veering towards the dire end of the spectrum. Specifically, I had a huge swelling on one side of my vulva that grew almost as soon as I started to train and eventually never went away. In its fifth year – 2018 – the lump got quite hard and was, literally, massive. I could no longer ignore it.

Perhaps if I had cycled up to the gynaecological surgeon’s office in the year I started and recorded my vulva’s shifting shape and size, every year they would have tracked its slow descent into a swollen hell with a hole. Sadly, I came to the doctors very late and they reacted as if it had grown teeth overnight.

I saw a host of surgeons across Scotland: at first, two plastic surgeons; the two I mention in this article. The surgeon who did my final procedure was a vulval cancer surgeon.

When the body receives damaging forces over time, it has a neat protective mechanism. It creates an internal “fat cushion” – a lipoma – between where it is experiencing damage and the tissues that need protection. I had two operations at the end of February and the lipoma was removed. Twice it was checked for cancerous tissue, twice it has come back negative.

The problem is, vaginas are already so associated with pain – there’s periods, penetrative sex when you aren’t ready, penetrative sex when you are ready and the mother of them all: labour. Having a vagina means having pain so maybe being a cyclist with a vagina means pain with a bit more pain added on top. I would accept this if, in comparison to every other aspect of the bike, the male-anatomy-specific-saddle hadn’t received such a lack of research and design development as to be laughable. And, of course, men get horrendous saddle sores too. But when bike helmets are marketed by the Germany transport ministry using a model in her underwear with the slogan “Looks like shit. But saves my life,” instead of maybe using one of the country’s host of Olympic champion bike sprinters; or the fact that women are still excluded from the Tour de France, there is a feeling that female bike racing is not taken as seriously. This has a huge impact on health and research.

Our forward-leaning position is a peritoneal pressure cooker of pelvic rotation. Your front bottom takes your full load

While the valuable parts of the male genitalia can be moved out of the way, female cyclists sit right on the money. Some saddle companies have adapted designs that work better for women: Selle Italia has a cutout in the middle of its saddle and is made of softer material and ISM has a nose that divides into two prongs (these were not designed specifically for the female anatomy but for some people they work). But the problems really occur when a racer’s position is altered to make us go faster. We used to sit on bikes in the sit-bone heavy, minimal injury “tourist” position (think of a Dutch bike). Now, our forward-leaning position is a peritoneal pressure cooker of pelvic rotation: your front bottom takes your full load. If any woman is serious about road cycling I would start with a good bike fit that maps saddle pressure. Do that before any serious road miles. Ensure you are comfortable and go from there.

Learn to be open about pain and swelling, too. Silence, secrecy and shame only exacerbates the problem. When I announced my situation to my friends, some of whom ride for British Cycling’s Olympic and Paralympic programmes, they didn’t bat an eyelid and volunteered their own accounts. We swapped stories of worrying needlessly about what a new partner would think (they often didn’t notice) to inadequately preparing a GP before a smear test and having to explain that what they were seeing was normal for cyclists.

When a doctor sees another woman like me, “cancer” will often be their first thought as that can be the cause of vulval swelling. If there were studies into the vulva and its lipoma-formation-defence against constant and unremitting pressure from the saddle, maybe this wouldn’t happen. But there has never been a study – only articles like this and experiences like mine.