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.
BEAT
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.
Now I was facing IVF and the fact I had endometriosis without knowing it?! I felt blindsided.
On reflection, the fact that the disease had been hidden was understandable. Endometriosis can be silent, but I may have noticed symptoms – perhaps irregular, painful periods – had I been menstruating throughout my adult life.
Specifically, I have something called ovarian endometriosis, large cysts which have damaged my egg quality and quantity, which has significant implications for fertility.
‘Combined with your low egg reserve and age of 37, there’s no point bothering with less invasive forms of treatment because your chances of success are too low,’ the doctor explained kindly.
I was crushed, and daunted.
After seeing me through a life-threatening mental illness, my husband and I had thought our battles were mostly behind us.
We’d come out stronger together so we could get on with being married and starting a family, but now there was another hurdle in our way.
As it later transpired, my endometriosis was all over – spreading to my pelvis and twisting my fallopian tubes – meaning we’ve had to face the fact that, even with IVF, our chances of success are relatively low.
Determined not to give up, we’ve followed the doctor’s advice and started treatment – our fertility crusade continues.
So far we’ve been through 10 egg retrievals, 9 embryo transfers but zero pregnancies. We are still holding out hope and, fortunately, our relationship seems to go from strength to strength with every setback.
Had I not been ill for almost the first decade of our relationship, we’d probably have started trying for children sooner.
If we had, maybe my endometriosis would have been discovered at an earlier age before my egg reserves were so damaged, so treatment could have started quicker and improved our chances.
During recovery I’d become philosophical about my eating disorder, almost grateful to anorexia for the empathy, compassion and resilience it gave me. I was even starting to accept its part in my life trajectory.
Now though, I will never forgive it for its part in infertility.
If I could go back to 2006 and drag that young woman off the treadmill, or smash the calorie counter, I would.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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