Hilary Mantel’s honesty about endometriosis helped women like me feel less alone

The late author wanted better care, research and understanding for other women

September 26, 2022 2:41 pm(Updated 2:46 pm)

“Anything I have achieved has been in the teeth of this disease,” wrote the novelist Hilary Mantel in the foreword to a 2015 book, Coping with Endometriosis. “It need not be like this.”

Mantel, who died aged 70 last week, suffered a debilitating form of the condition that causes tissue similar to the womb lining (endometrium) to grow in other parts of the body, usually around the pelvic area. It grows and sheds each month just like menstrual blood but has nowhere to go, often forming scar tissue.

Symptoms vary hugely but Mantel described the devastating pain she suffered that started with her first period aged 11. “My own battle with the disorder,” she wrote, “seems to have occupied most of my life. Period pains were normal, I was told, and if I seemed to suffer more than most, it must be because I had a ‘low pain threshold’.”

In 1980, when she was 27, “bleeding continuously and hardly able to stand upright”, she was finally diagnosed, and had her womb and ovaries removed, along with part of her bladder and bowel.

The operation did not cure her (there still is no real cure) and the drugs she was prescribed caused further lifelong health problems.

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Aside from showing a glimpse of the personal struggle that lay behind her genius as a writer, her sharing of her battle had a purpose: she wanted better care, research and understanding for other women, knowing that she and so many others had been dismissed and failed by the medical establishment for their severe symptoms.

In a poignant coincidence, Saturday’s iweekend cover featured a picture of Mantel alongside our columnist Emma Barnett, another sufferer of endometriosis, who has done much to bring it to mainstream attention. Barnett has undergone many rounds of IVF to be able to conceive and was sharing news of her pregnancy.

Barnett has also written of her years-long struggle to be listened to by doctors. She was finally diagnosed at 31.

Endometriosis is difficult to diagnose as it has to be done under general anaesthetic with an internal camera via a laparoscopy (keyhole surgery). I was diagnosed this way in my early thirties as part of infertility checks, and I probably would never have known otherwise.

According to Endometriosis UK, 10 per cent of women in the UK have the condition. Countless women still suffer in silence and are never diagnosed, not knowing that their experience is abnormal. After all, sharing and comparing menstrual symptoms that can include prolonged heavy bleeding and bowel problems has traditionally been taboo, and in many countries still is.

I’ve told only a handful of people about my experience until now. And in fact, I remain pretty much in the dark about how endometriosis affects me – two of the three gynaecologists I’ve seen were very unsympathetic men, one of whom directed all his questions and comments to my then-husband.  This, and the fact that the primary reason for my visits was infertility, meant that I didn’t open up about my menstrual symptoms that I’d always thought were just “normal for me”.

After I came around from the laparoscopy, all the surgeon told me was that he had lasered away some patches of endometriosis and I had a three-month window in which to try to get pregnant, as it was only a temporary fix. I wish I’d asked more questions, but all I was focused on was the impact on my ability to conceive, and I was extremely lucky that in the third month I did.

So the battle for better diagnosis and treatment is far from over. But just by writing about their experiences, both Mantel and Barnett have provided something else that’s been missing in this sometimes secret and shame-ridden area of women’s health: friendship.

When someone, even a stranger, can offer empathy about the intimate details of this condition and also lead a rallying cry at the general injustice of the state of women’s healthcare, it makes me and I’m sure many other women feel a bit less alone and also a bit more empowered.

Indeed, Mantel wrote that what a woman needs when diagnosed with endometriosis is a “friend… to guide her and assure her she’s not alone”. In speaking out with eloquence and kindness about this mysterious, invisible but potentially devastating condition, she gave comfort and courage to many people she would never meet.