My experience of: Endometriosis

In my first few days of university I met a bright, bubbly girl while I was out on a pub-crawl. She had crazy hair, wore glasses and she was on the same degree course as me. We spoke at high speed back and forth for hours that night, and became great friends very quickly. We took several classes together and would sit in one of our dormitory kitchens, which were almost identical except hers was purple and mine was green, and drink tea (hers weak, mine strong) while we discussed poetry.

By the time we reached second year, the two of us were virtually inseparable. We didn’t live together but we might as well have. We continued our tea-drinking tradition (we could share a teabag and both get a perfect cuppa, exactly how we liked it) and chat for hours about novels and boys and plays and roommates and exams and lecturers.

There was something, though, I didn’t quite understand about my best friend. This friendly, outgoing woman would disappear for a few days every so often – I would come to the end of a week having not seen her since Monday and wonder where she’d been. Had she been hibernating? In a way, yes. She’d been in bed, not feeling well, most of the week. But she felt better now… My slight but strong-minded friend would be unable to move for pain for several days, but she put on a brave face.

What I didn’t know was that she had endometriosis. But she knew. She had known for years. She knew why she would be floored for several consecutive days every single month of her life. She knew the reason she had to ask favours of friends visiting the USA because she couldn’t buy strong enough painkillers in the UK. She knew because it is a hereditary condition that both her mother and aunt suffered from. She knew. But the doctors refused to help in any way; they refused to treat her, they refused to diagnose her, they simply refused to examine her. They heard what she said but would not listen. The more help she tried to get, the more she was pegged as a complainer, a whinge, a hypochondriac.

Watching a friend go through the same process described by many women with endometriosis – the constant misdiagnosis, the refusal to take women’s pain seriously, the continued allusion to some modern form of hysteria – is painful in itself. Knowing that she knew precisely what was wrong with her but no medical professional would take her seriously was angering, upsetting, depressing. I couldn’t pretend to understand what she must have felt.

Her inexhaustible determination, humour and ability to get better grades than everyone around her belied her condition. I often found it hard to believe that the feistiness and strength I saw in her every day would be stripped away with the pain, which would leave her weak, dizzy, and often had her fainting in agony. She once arranged to spend the night with her very new boyfriend and, instead of the romantic, cuddly evening she’d had planned, she fainted and he panicked. He had no idea what was wrong. He had no idea that a woman’s pain could be so serious an issue. Once she’d come to and explained, he was sensitive and understanding. He became a new recruit in her small but determined army of support.

Doctors often recommend that women with endometriosis take the contraceptive pill. My friend had allergic reactions to the several varieties of the pill that she was told to try. The only other suggestion for easing the pain that medical professionals made was to have a baby. The first time she heard this, my friend was 17. Way to encourage an intelligent young woman to take charge of her health, NHS!

I cheered her up by calling all the awful people in her life “cunts” (a word I had just discovered in earnest) and making her more tea, but that didn’t solve the problem. About half way through our second year of uni, she confided that she’d finally found a medical professional who took her and her illness seriously. She had to have surgery simply to find out whether she had endometriosis. She missed the last week of term, spent the entire four weeks of Christmas in bed, and had to apply to get extensions for all her deadlines. She recovered slowly but healthily and things got better. But while the surgery helped for a little while, it did not improve things permanently. My friend still suffers from endometriosis now.

This all came flashing back upon reading Lena Dunham’s article The Sickest Girl  published in Tuesday’s Lenny update. Lenny have put together an entire issue on endometriosis because, while one in ten women in the USA suffer from this major health problem, very few will ever be diagnosed. In other words, the majority of women are unaware that endometriosis could be affecting them. I heartily believe that that should not be the case. So spread the word.

I implore you to read the Lenny-letter articles, including an interview with Padma Lakshmi, co-founder of Endometriosis Foundation of America and A.N. Devers who shares the reality of what this pain can do to women, even if it is diagnosed.

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