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The Guardian - UK
The Guardian - UK
Politics
Hannah Devlin Science correspondent

‘Worse than childbirth’: women with endometriosis call for better treatments

Woman leaning on a tree.
Lisa Hague has lived with endometriosis for most of her life. Photograph: Christopher Thomond/The Guardian

Lisa Hague, 38, was diagnosed with endometriosis at the age of 17 after being in such severe pain that she resorted to taking a powerful painkiller, dihydrocodeine, that had been prescribed to her partner for a sports injury. She had an allergic reaction to the codeine and was taken to hospital.

After speaking to a doctor about why she had taken such a risk, she was referred for a laparoscopy and diagnosed. “I’d never heard of endometriosis before and didn’t know anyone that had it,” she says. “It was just, some people are unlucky and get period pains and others don’t.”

The diagnosis was a relief, but there were few treatment options available and she has had to manage intense pain and very heavy bleeding for a few days each month. “I’ve had all four of my children with gas and air and my period pains are the worst pain I’ve ever experienced,” she says. “I’d describe it as contraction pain – an internal, muscular cramping pain – but at least in childbirth you get the break inbetween contractions.”

Hague, who lives in Nottingham and works as a grief counsellor, says that being self-employed means she can plan client activities, such as hosting grief retreats, so they don’t coincide with her period. “I’m so lucky that I work for myself – without that, I’d need a very understanding boss.”

At times, she has resorted to sitting against hot radiators or taking scalding baths to “as a distraction from the internal pain”. “It is very dismissed still at the doctors,” she says.

She has considered having a partial hysterectomy, but was advised that although this would stop her periods, it would not be guaranteed to reduce her pain. “Having surgery is a massive step, so I thought: better the devil I know,” she says. It is only recently, after visiting a gynaecologist, that she has found a combination of pain medication and drugs to reduce cramping, that her pain is mostly under control.

Hague says there is a “desperate need” for better treatments so that her teenage daughter’s generation do not face the same struggle. “Things have got to have changed since I was 17,” she says.

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