My eating disorder masked a serious condition by stopping my periods

Confused, I repeated the doctor’s words back to her. ‘I have endometriosis?’. ‘Yes,’ she replied. ‘And I recommend going straight for IVF, promptly.’. I was too stunned to speak. What had started as a check of my reproductive health after trying for a baby for nearly a year was now more serious.

While I’d expected some complications with conceiving as a result of my 16-year-long battle with anorexia, I never could have predicted this. Growing up I’d had a stable, happy childhood and no serious body image concerns. However, at age 20 when I started my PhD, I joined the gym for the first time in my life.

I wasn’t striving for skinny, just aiming to feel ‘toned’, strong and healthy. But very quickly I became obsessed with the calorie counter on the treadmill as it represented all the food I was ‘earning’ – not that I ever did repay myself. Though I didn’t know it at the time because I was on the pill, I had stopped menstruating around this period due to being underweight.

By the time I turned 21, my obsession with being ‘virtuous’ turned into a full-blown eating disorder. It felt like I was saving up for a day when I would eat all the food I’d ‘earned’ but that day never came. In 2007, now 22 and feeling trapped, I sought help from university health services and was officially diagnosed with anorexia.

It made me feel like an imposter, not least because by this point I wasn’t yet drastically underweight. So, I carried on as I had been. Before long, I was exercising every day and eating in a restrictive, ritualistic way. None of it was enjoyable, but I felt unable to live any other way. In my mid-twenties I moved cities to start my first job and was quite reclusive, unable to socialise because of my strict gym regimes and fear of eating anything other than my safe foods in the environment of my flat, which I rented alone.

A few years later, however, I requested help again as, by now, my weight was dangerously low. I knew I looked visibly ill and my family and friends were very concerned. I was also absolutely sick of being trapped in a disordered lifestyle. I went to a new doctor, who took me off the pill, which I’d been on since I was a teenager, as he suspected my menstrual cycle would have been stopped anyway due to my weight.

Sure enough, even after stopping contraception, my periods were absent. My eating disorder was obviously doing serious damage to my reproductive system, which scared and saddened me. Inpatient treatment was suggested but I refused because I just couldn’t see myself living in a hospital.

I therefore began treatment as an outpatient at a NHS eating disorders unit. Despite this, my weight continued to decrease and, just days before my 29th birthday, the mental health crisis team arrived on my doorstep. I came to realise that gaining weight was my way out of this mental torture, as the brain needs nourishment to think clearly.

They told me the eating disorder unit had a bed waiting for me, insisting I needed to go into inpatient treatment. Once again I refused, forcing the crisis team to conduct an assessment, there in my living room, to see if they could section me. I answered their questions in a way that avoided that fate, but it left me frozen in stasis – I felt I had no fight left.

Gradually I gathered strength and decided to garner more agency over my recovery. I leaned into self-help, including podcasts, books and blogs, and my love for science was ignited in learning about the mechanisms of this complex illness. Through this, I came to realise that gaining weight was my way out of this mental torture, as the brain needs nourishment to think clearly.

Slowly, I saw food as a sort of medicine. I started gaining weight and the mental torture slackened. I stopped all exercise except walking and introduced more food, and more variety, into my daily intake. Importantly, I started seeing eating as an opportunity to challenge anorexia by realising what my illness wanted me to do, and doing the opposite.

In the midst of these difficult years, I’d met my soulmate and, in February 2020, we got married – my weight just within ‘healthy range’. Against all odds, when I was almost 36, my periods restarted. They weren’t regular, which I put down to ongoing recovery, but suddenly, the thing we’d barely dared to dream about  – having children – was now a possibility. I felt proud, hopeful and with a renewed sense of responsibility.

If you suspect you, a family member or friend has an eating disorder, contact Beat on 0808 801 0677 or at help@beateatingdisorders.org.uk, for information and advice on the best way to get appropriate treatment. For other helplines across the UK, visit here for more information.

But when we still weren’t pregnant after a year, we were referred to reproductive medicine and received that shocking endometriosis diagnosis. I’d presumed the reason I wasn’t getting pregnant was that my body needed help ovulating, that I’d be given some tablets to encourage ovulation and that a baby would follow soon after.