A couple of weeks after my 30th birthday, in October 2013, I woke to find my body had gone numb from the waist down. I could still walk, but with difficulty. I thought I’d put my back out, but a few days later my GP sent me to A&E, where they used a can of ice spray on my legs to test my levels of sensation: I could barely feel anything.

After more tests, I was diagnosed with multiple sclerosis. Obviously, this was a major shock – you don’t expect to be told something so drastic, especially at 30 – but I’d felt for a while that something was wrong with me. People thought I was making up feeling so tired all the time, or that I was lazy, so my diagnosis also brought with it a sense of validation.

As I began recovering from this relapse, I felt my body going through all sorts of changes: pins and needles that went on for days, and pain like an electric shock down my spine. A couple of months later, I was still coming to terms with what this major illness would mean for my life when I tried masturbating for the first time since my diagnosis. It was taking much longer than usual to reach orgasm. Normally, I’d be done in 10 minutes, but nearly an hour had gone by and I still didn’t feel close. Finally, I felt the muscles in my pelvis start to contract, but then: nothing. There were spasms, but I felt no pleasure, like when a random muscle starts to twitch. I just lay there feeling completely empty. It was as if I was dead inside. My orgasm had disappeared.

I Googled it – which definitely wasn’t a good idea – and read a Q&A with a doctor who said that, with MS, sensations change and nerve pathways are damaged, so your orgasm might well vanish for good and all you can do is mourn. I later saw an MS relationship counsellor who gave me similar advice: “Sex isn’t everything. Companionship is more important, so focus on that.” I despaired. I hadn’t even had much sex yet, and I felt that a part of myself that I hadn’t explored was already lost. I was angry that this aspect of life was now all over.

The MS Society website gave me a glimmer of hope. I read that, although many people with MS do find they are less able to reach orgasm, there are things you can do to help. I started to think that perhaps my sex life wasn’t over; it was just going to be different, and I became determined to try to teach my body to orgasm again. I had no idea if it was going to work, but I’m quite stubborn and wasn’t prepared to give up.

So I masturbated two or three times a day; I didn’t have much of a social life, so I had the time. Even if I didn’t feel anything, I would persist and do it again, trying different things like new models of vibrator. Not long after starting a treatment for MS called Tysabri, I felt a spark of pleasure. It wasn’t an orgasm, but it was a flutter of something. I had no way of knowing if my orgasm was finding a new route to my brain, or if my body was starting to work again, but I was thrilled.

Gradually, the sensations got bigger and more intense, until I found I was having orgasms that were far more powerful than any I’d had before my diagnosis. Back then, they felt small and contained; now, my whole body is affected.

About six months after I got my orgasms back, I began a new relationship. I was nervous about having sex with someone for the first time since my diagnosis, but my partner, Dylan, really understands me and my illness, and doesn’t seem bothered if we have to stop in the middle or if it isn’t going to work. I don’t come every time, but I didn’t realise you could have orgasms like this.

I don’t know the trajectory of my illness, because no one does, so I’ve got to live the best life I can right now. I decided to stop working as a teacher to become a freelance writer, and I’m now writing a play called MS Is My Boyfriend, about people’s different experiences with the disease. Meanwhile, my partner and I are having as much joyful, messy sex as we can.

• As told to Moya Sarner.
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