The day after I wrote in the Guardian about how my life as a female cyclist, and Paralympian, led to me having reconstructive surgery of my vulva – all because saddles are not designed for women – a book arrived in the post. It was The Vagina Bible by Dr Jen Gunter. It was a gift from my mum, who had read the searing details about my labial surgery. She has always had a good sense of humour.

The response from other people was overwhelming. That is the thing when you share – people share back. When the first professional cyclist contacted me to tell me she had gone through the same thing, the relief was so profound that I cried. I can now say with certainty that there are other people like me who, due to the wrong kind of pressure, experienced a cycle of chronic inflammation and swelling. These are people for whom cycling is as necessary to life as breathing and they face an impossible dilemma.

There was an awkward moment when I turned up for my gym session to the sound of Greg James interviewing me on Radio 1 about my vulva. The media furore was so huge, so unexpected and went on for so long that I began hoping the fame might go away.

What happened next, though, was that I became the UK’s unofficial agony aunt for saddle trauma. Writing about my surgery started a conversation where there was silence before. Thanks to more female staff in cycling team environments, more social media groups, more newspaper articles, more doctors who listen and give you choice, and manufacturers that admit there might be a problem with their products, prevention is in sight.

The professional US cyclist Alison Tetrick had the same surgery as me. She pushed her sponsor, Specialized, to take seriously the problems women on her team were having with their saddles. A two-year research project led to the only saddle I can now use without pain (the Power Saddle with Mimic technology). We are holding our breath for Specialized’s forthcoming 3D-printed saddle technology – basically a carbon cast of your bottom that should ensure all lumps and bumps are accounted for. It would be remiss not to stress that saddles are designed with men in mind. That is why an individually customisable solution holds so much hope. Saddles can fail anyone. Yet women already face a data gap, as is so evident in Caroline Criado Perez’s book Invisible Women, and we can no longer ignore it. Accessing effective medical treatment is harder and solutions are more expensive. Bike parts, technological developments and racing procedures are all geared towards men.

Jasmijn Muller is an ultra-endurance racer and winner of the World 24-hour TT Championships. When I asked her to rate her saddle comfort since having her second of two vulval surgeries at the end of 2018, the answer was 10/10. This year, she has perfected her bike position, dealt with saddle pressure and even has special inserts in her shoes. Her battle was slightly different from mine – a recurring bacterial infection that was so bad it was tracking down her legs and up to her stomach. She is soon to be a coach. I am excited by this. A few of us were told by cycling mentors that what we were experiencing was normal. I wonder what the world would be like if every coach was like Muller.

I wrote about my surgery because I wanted friends in this fight. Now I have them. Since the article was published, I have presented at the British Lymphology Society’s annual conference and there is now a dedicated clinic in London for swelling-related saddle trauma. There are saddle-pressure projects running at Dundee and Manchester universities and I am attempting to form a network of all surgeons who have performed the relevant procedures in hopes that, one day, there will be a go-to best-practice guide.

Oh, and I won a bronze World Cup medal and crashed out at the world championships. I will leave you with my favourite Phoebe Waller-Bridge skit for Saturday Night Live. “Think about how many of them are in this room, right now. Just think about all the genitals, all across America, sat on couches right now,” she said. The genitals that are still being crushed into oblivion on bike saddles. But I’m so glad we can talk about it.

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