Endometriosis: Here's what you need to know

It’s a cripplingly painful condition that can lead to depression and infertility – so here’s what every woman should know.

Most women suffer period pains. But 1.5 million women in the UK suffer them so badly, what should merely be a monthly inconvenience becomes “a chronic and debilitating condition”.

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Yup, welcome to Endometriosis, “a condition where the endometrial cells lining the womb stick to other parts of the body forming endometriosis lesions, most commonly to the inside lining of the pelvis,” explains Andrew Horne, professor of Gynaecology and Reproductive Sciences at the University of Edinburgh.

And now actress Lena Dunham has revealed she has had a total hysterectomy due to the pain from endometriosis.

Not heard of it before? Well, to be frank, you should have done. It’s the second most common gynaecological condition in the UK, it costs the NHS over £8 billion a year, and, if you have it, there’s a chance it could potentially lead to infertility.

Coronation Street's Kate Ford, who plays Tracey Barlow in the soap, revealed her battle with the condition last year - so we've looked at what you need to know.

Painful periods

Oh, and the pain is often so crippling, sufferers can’t even get out of bed.

“Endometriosis is associated with painful periods, but can also be associated with pelvic pain when a woman is not menstruating, or pain with sexual intercourse,” explains Horne. “It may also be associated with fatigue, bowel and bladder problems, and fertility problems.”

Not enough? There’s often also aching legs, lower back pain and depression.

What causes Endometriosis?

“It has been argued that endometriosis is a genetic disease, and if a woman has endometriosis, the risk that her first-degree relatives will also have endometriosis could be anywhere from four to seven times higher than that of the general population,” Horne points out.

“However, having a close female relative with endometriosis does not mean you will certainly get it because many different factors are likely to be involved in causing endometriosis.”

While the true cause is unknown, experts believe a weaker immune system may also play a factor.

 

And what happens if I have Endometriosis?

One depressing answer is - you wait: experts say, on average, it takes 7.5 years from onset of symptoms to get a diagnosis of endometriosis.

“The only definitive way to diagnose endometriosis is by a laparoscopy,” says Horne. “An operation in which a camera is inserted into the pelvis via a small cut near the tummy button.

“The surgeon uses the camera to see the pelvic organs and look for any signs of endometriosis. If endometriosis is diagnosed, the endometriosis may be treated or removed at the same time.

“Scans and blood tests are not a conclusive way to diagnose endometriosis, and a normal scan and blood test does not mean that you do not have endometriosis.”

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And if I’m diagnosed with Endometriosis - then what?

“Currently, there is no cure for endometriosis,” Horne explains. However, it’s not all bad news.

“With the right endometriosis treatment, many of the issues can be addressed, and the symptoms of endometriosis made more manageable. Treatment options available to women with endometriosis are pain relief, hormone treatments and surgery.”

Can I get pregnant if I have Endometriosis?

Endometriosis can be associated with difficulties becoming pregnant, but even women with severe endometriosis can still have a baby naturally.

“It is estimated that 60-70% of women with endometriosis are fertile and can get pregnant spontaneously and have children,” Horne stresses. “Of the women with fertility problems, a proportion will get pregnant, but only after medical assistance - either surgery with removal of the endometriosis lesions or medically assisted reproduction (IVF).”

If you have any of the symptoms mentioned above and are worried that you might have endometriosis, you should consult your GP for advice.  To find out more about endometriosis from the leading UK charity dedicated to providing information and support to those with endometriosis (Endometriosis UK), go to www.endometriosis-uk.org.