Endometriosis: is the condition finally getting the attention it deserves?

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 (Unsplash)
(Unsplash)

March marks the start of Endometriosis Awareness Month, a campaign aimed at promoting awareness around the condition which affects one in 10 women.

While endometriosis can be debilitating and excruciatingly painful for many women, shockingly, the average diagnosis time is currently more than seven years.

But all that might finally be about to change, as last month scientists from UCL outlined a new set of guidelines aimed at improving diagnosis.

And a number of high-profile celebrities, including Alexa Chung, Chrissy Teigen, Lena Dunham, Kayla Itsines and Molly-Mae Hague, have increasingly been speaking out about how living with the condition has affected their lives.

Chung previously opened up about her diagnosis in a post on Instagram. “Endometriosis is a long-term condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. It can be excruciating. The pain can effect your mental health, ability to work, relationships, your fertility, the list goes on.

“The only way to officially diagnose that you have it is by performing a laparoscopy. A year ago I put on these snazzy socks in preparation for my laparoscopic surgery,” she wrote.

Last year, both fitness star Kayla Itsines and Chrissy Teigen revealed they were undergoing surgery for the condition.

And back in 2018, Lena Dunham announced that after eight surgeries and years of dealing with endometriosis, she had undergone a hysterectomy (a surgical procedure to remove the womb) to relieve her symptoms.

Currently, endometriosis is estimated to effect one in 10 women during their reproductive years worldwide — and around 1.5 million women in the UK alone— and symptoms can vary in severity for each individual.

What is endometriosis?

“Endometriosis happens when cells from the lining of the womb appear outside the womb itself,” explains Dr Ahmed Elgheriany, fertility specialist at GENNET City Fertility. “This means that every month, during a period, these cells will start to bleed. Your body will start to secrete some inflammatory markers, like fibrous healing tissues which will lead to scar tissue in the pelvis and the tummy.”

What are the symptoms of endometriosis?

Symptoms can include pain in the lower abdomen, pelvis or lower back, pain during and after sex and bleeding between periods.

This kind of period pain usually starts in the days leading up to your period and continues after for two to three days, explains Elgheriany. “It can interfere with daily life and can sometimes lead to repeated absence from school or work.”

The second most common symptom is a “deep penetrating pain” that occurs during intercourse. “Endometriosis pain is commonly felt in the utero-sacral ligament, a highly sensitive area that supports the neck of the womb to the sacrum, which can easily be touched during intercourse.”

If you regularly experience either of these symptoms it’s a good idea to make an appointment to see your GP, if only for peace of mind.

How many women are affected by the condition?

Around one in 10 women are thought to have endometriosis. It can run in families.

How is endometriosis diagnosed?

Diagnosis can take some time because the condition can manifest itself in different ways, and also because it shares symptoms with other conditions. Shockingly, recent research suggests there is now an average of 7.5 years between a woman first seeing a doctor about symptoms and receiving a firm diagnosis, according to Endometriosis UK.

But hopefully that’s going to change soon. Last month scientists from UCL outlined a new set of guidelines aimed at improving diagnosis of endometriosis.

UCL Professor Ertan Saridogan said: “Having new clinical guidelines means better support and treatment for the millions of women who suffer from endometriosis and do not get the attention they deserve. This new work expands on important issues such as the clinical evidence on endometriosis in adolescents and postmenopausal women. It also outlines the diagnostic process, challenges the current laparoscopy and histology used as the overall gold standard diagnostic tests, and it evaluates surgical, medical and non-pharmacological treatments.”

Elgheriany says: “Until a few years ago, it was believed that laparoscopic surgery (an operation in which a camera is inserted into the pelvis via a small cut near the navel) was the only way to diagnose, but recently it has been argued that a pelvic ultrasound and MRI imaging are the gold standard for diagnosis.”

Is endometriosis treatable?

Treatment can reduce the severity of symptoms and improve the quality of life of a woman living with endometriosis.

Treatment typically depends on a number of factors, including age and symptom severity, but typically includes painkillers, hormone medication and contraceptives, as well as surgery — patches of endometriosis tissue can sometimes be surgically removed to improve symptoms and fertility.

Is there a link between endometriosis and infertility?

Endometriosis does not necessarily cause infertility but there are some associations with fertility issues. According to Endometriosis UK, even with severe endometriosis, it is estimated that 60-70 per cent of people living with the condition can get pregnant through natural conception. More research is needed into the link between endometriosis and fertility.

Resources

If you are affected by the condition, it’s crucial that you don’t suffer alone.

There are a number of resources and communities where you can seek help. Check out Endometriosis SHE Trust UK and Endometriosis UK for advice, support and further information, meanwhile Instagram communities like the Endo Girl Gang (@endogirlgang), EndoCo (@theendo) aim to promote awareness and provide resources about the condition.

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