‘Joy exposes how long women have fought for endometriosis support’

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Joy and women's battle for endometriosis supportNetflix

After years of agonising pain, anaemia, fainting and heavy blood loss since I was 12, I was finally diagnosed with endometriosis in 2023. Like many women, I was forced to go private to eventually secure the diagnosis after years of being dismissed by doctors. On the morning of my investigative surgery, as I pulled on my compression stockings, I prayed that the surgeon would find endometriosis, so there would be a clear diagnosis, a reason for my suffering.

Despite feeling enormous validation when endometriosis was discovered (a chronic condition in which endometrial tissue similar to the lining of the womb grows outside of the womb causing pain and other symptoms), anyone with endo knows that diagnosis is only the first step.

This week, Netflix film Joy starring Bill Nighy, James Norton and Thomasin McKenzie which tells the story of the first baby born by IVF, exposes the additional struggles of living with the condition. While the film ostensibly focuses on the invention of this revolutionary fertility treatment, to me it was far more about how long women with endometriosis have been suffering.

Despite the recent rise in awareness, it may come as a surprise to many watching Joy that endo is not a new discovery at all. While the first description of a disease resembling endometriosis can be traced back to the early 20th century, it was American gynaecologist, John Sampson, who systematically studied the chronic condition, and coined the term — in 1921. That means it’s been more than 100 years that scientists have been aware of the condition. Yet still, so little has been done.

Set in the 1960s and 70s, Joy follows the story of Jean Purdy, a young scientist from Cambridge who was unable conceive due endometriosis. It was her own struggle with infertility that spurred her fight against religious and other communities for the development of IVF. At one point in the film, when asked by a colleague if she had been assessed for her endometriosis, Jean says: “once, and it wasn't much use.” As we know all too well, it can take an average of 7.5 years for women receive a diagnosis — a figure that has only risen in recent years despite wider awareness of the condition.

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An estimated 30-40% of those with endometriosis struggle to get pregnant spontaneously Kerry Brown/Netflix - Netflix

Sadly, many women first learn that they have the condition when trying to conceive, with an estimated 30-40% of those with endometriosis struggling to get pregnant spontaneously. I’m grateful this wasn’t the case for me, though — having always known I want to be a mother, it is not of huge comfort. With the freedom of finding out what exactly was wrong with me after so long, came the feeling of imprisonment. Knowing that this bleeding tissue is growing inside me, attaching to my organs and that there’s little I can do about it, is terrifying.

I’ve tried to make light of how I feel about it all, telling friends I’m ‘barren’ with a light giggle as if dark humour will improve my situation. But behind the façade, I’ve spent countless nights mulling over how long it could take me to conceive.

My feelings of panic around fertility and endo were validated this week when Florence Pugh revealed she has chosen to freeze her eggs at 28 following a dual diagnosis of endometriosis and polycystic ovary syndrome(PCOS). The actor described coming from a “baby-making machine” family and one day also wanting children of her own. I can relate. Just like her and Purdy, I’m surrounded by women who are mothers or hoping to be, and I often question whether at the (not so) grand age of 27, if I’m delayed in beginning my fertility journey. Should have I harvested my eggs already? What if I have an ectopic pregnancy? The changes of this, where a fertilised egg implants outside of the womb, are doubled among those suffering from endo. Will my mum ever get a grandchild?

The Department of Health and Social Care (DHSC)'s Women's Health strategy for England showed that only 8% of respondents felt that they had access to enough information on gynaecological conditions such as endometriosis and fibroids. The aims of the 2022 report include ensuring that over a 10-year plan, women and girls with severe endometriosis experience better care and that diagnosis times will be reduced.

While worthy aims, after over 100 years of waiting, this is not enough for those suffering. Meanwhile, in the two years since the strategy was announced, things have gotten worse for many. Getting a diagnosis for endometriosis now takes almost a year longer than before the pandemic, according to research this year from Endometriosis UK. Many women are forking out for private surgeries as I did, with seek-and-treat laparoscopies costing thousands of pounds.

Since my diagnosis, I’ve been left in the dark with little follow-up care. If I need further help, I have to return to the GP and begin the entire referral process again. Only because I was admitted through A&E for a suspected twisted ovary this year, have I now been assigned to the care of an endometriosis nurse.

There has been some — albeit glacial — progress. With new therapies and medications coming to fruition all the time and increasing conversations around the condition thanks to brilliant charities and campaigners leading the way, I’m hopeful that those of us with endometriosis will notice changes in the next decade. But we have depressingly far to go. In the meantime, Joy is a reminder of how far the endometriosis community’s battle has come and how miraculous discoveries in fertility treatment and a wider social awareness of gynaecological conditions have developed since the ‘70s. While women continue to wait and suffer, this film at least reminds us of that.

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