Long Reads

Endometriosis pain: “Doctors told me my period pains were nothing. Then I collapsed.”

For 10 years, 29-year-old historian Robyn battled extreme endometriosis pain, but was continuously dismissed by doctors when she went to them for help. She was finally diagnosed with the condition – but five surgeries later, it was clear the damage had already been done. Here, she asks why women’s health issues aren’t being taken seriously enough.

March is Endometriosis Awareness Month, shining a spotlight on a common condition that affects one in 10 women – yet is rarely talked about, and is poorly understood. New research from the BBC surveyed 13,500 women about the condition, and found that half had suicidal thoughts, with many saying endometriosis pain had severely impacted their career, education and relationships.

It’s clear we need more understanding around endometriosis, as well as its symptoms, causes and treatment. Robyn’s story below makes a further case for this.

A decade is a very long time when you’re living with endometriosis.

Doctors treated me like an attention-seeking hypochondriac for 10 years before I was finally diagnosed, and I’ve had to fight for specialist treatment. I’ve suffered from the condition since my first period, which arrived when I was 13. With endometriosis, your uterine lining (or endometrial tissue) grows outside of your uterus and attaches itself to your internal organs, causing heavy bleeding, severe pain and cramping.

As a teenager I suffered from really heavy bleeding, and a lot more period pain than any of my friends. I felt very weak around my period – I started collapsing in school, and had to cut back on activities I enjoyed because I just didn’t have the energy. My GP refused to send me to a gynaecologist before I turned 18, because I was ‘still a child’. Instead, at 15, I was sent to paediatrics, where my unbearable symptoms were dismissed as “growing pains”.

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For years both my mum and I were dismissed as hysterical women. Doctors kept trying to palm me off, believing I didn’t understand what periods were meant to be like. I knew from talking to other girls my age that not everyone suffered like this, but I was met with complete dismissal and disbelief. 

There was so much sexism in doctors’ responses. My mum had experienced endometriosis herself – we both knew the symptoms – but doctors said she was projecting onto me; that she’d put the idea into my head and I was trying to copy her. I was overdramatic and attention seeking. It was all in our heads.

The American Food and Drug Administration (FDA) approved Orilissa, the first new pill developed in 10 years to treat endometriosis. It’s a small step in the right direction for the 200 million women worldwide who suffer from the debilitating condition
Endometriosis pain: the condition affects one in 10 women in the UK.

When I was 18 I had the coil fitted, which stopped my periods completely, and that was amazing, but short-lived. A year later, the pain came back, just without the periods. Instead of having pain for a week every month, I had pain every day. I was told it couldn’t be anything to do with my reproductive system, but eventually a scan showed that I had multiple cysts on my ovaries.

I got the impression they wanted me to shut up and go away. At 21 years old I was given injections to put me into an artificial menopause, which was awful. It was so completely isolating to go through hot flushes, night sweats, joint pain and mood swings at that age. Nobody around me could really understand what I was going through except my mum and my granny. 

What’s worse was that the treatment didn’t even work. For some women, artificial menopause can ease the pain of endometriosis, but it didn’t for me. My pain was still there, getting worse, and I was such an emotional wreck that I suddenly found myself crying while watching the cute dog in the Dulux paint adverts.

My symptoms got so bad that I collapsed and was hospitalised for eight days, without the pain relief I normally had at home. During that time doctors took an X-ray of my hips, after which they told me there was nothing wrong with me, and that I needed a psychiatrist.

That was the breaking point for me. I knew I couldn’t just do what they told me anymore; I had to take it into my own hands. I found a specialist in Belfast and absolutely begged my GP to send me to him. I was 23 when I was finally given a laparoscopy, and the specialist discovered that I had stage 4 endometriosis.

The delayed diagnosis had allowed the endometriosis to really progress, spreading to around the outside of my uterus, my pelvis, my bowel, outside my bladder, and into my vagina and rectum. If I’d been treated earlier, so many of the related problems I have now could have been avoided.

Endometriosis pain: “I knew I couldn’t just do what they told me anymore; I had to take it into my own hands.”

Thanks to the damage done to my bladder and bowel, I now have a bladder condition called interstitial cystitis, which feels like having a UTI all the time, as well as gallstones, digestive issues, and pelvic floor dysfunction. I’ve had five surgeries since 2013, which helped slightly, but I’m still always in pain.

It’s really hard to think about how very different things would be now if I’d been believed sooner. I’ve had to make so many changes in my life to accommodate being in pain all the time. I can’t work full-time, dating is really difficult, and I’ve lost friends because I can’t be fun and spontaneous whenever I want.

Awareness of endometriosis has gone up in the past few years, but I do feel frustrated. It’s ridiculous that Orilissa is the only new, targeted treatment that’s been developed in the past decade – and even that’s only available in the US. In Northern Ireland, where I live, there’s only one surgeon who does excision surgery, which is really the gold standard, and there’s no national specialist centre for endometriosis. 

The slow progress on women’s health is sexist – you only have to look at how much more money and research goes into erectile dysfunction to see that. When it’s about female body parts, I’ve met doctors who can’t even use the correct anatomical terms – they’d rather talk about ‘down there’ and ‘waterworks’ than say the word ‘vagina’ out loud.

As a historian I know that women have been consistently disbelieved and dismissed throughout medical history. Even now, six years post-diagnosis, with all these unnecessary complications, I’m still treated like a hysterical woman. 

I hope that Orilissa, the first new pill developed in 10 years to treat endometriosis, will be made widely available, and that it will help to improve many women’s quality of life. But there’s still so much more work to be done on endometriosis – and we can’t wait another 10 years for progress.

This piece was originally published in July 2018

Images: Getty, Unsplash