What is endometriosis? Treatment breakthrough made by Australian researchers

Researchers in Australia have achieved a breakthrough that could alter the way endometriosis is treated, and enhance the health of those who suffer from the painful and debilitating condition.

The Royal Hospital for Women in Sydney has grown tissue from every known kind of endometriosis, and researchers have tracked changes and compared how each type responds to various therapies.

It implies that researchers will be able to experiment with various endometriosis therapies to ascertain whether a woman will require reproductive treatments.

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

The advancements are akin to those made in breast cancer treatment 30 years ago, according to professor of obstetrics and gynaecology at the Royal Hospital for Women, Jason Abbott.

In March, Bindi Irwin became the latest public figure to talk about her fight with the “debilitating” condition, saying she was going to keep her health matters private, but felt a sense of duty to other women suffering to let them know they are not alone.

She revealed that she had struggled with “insurmountable fatigue, pain, and nausea” for 10 years and that she had undergone surgery for endometriosis, after initially being told it was something “you deal with as a woman”.

Irwin told other women suffering from the conditon: “I’m sharing my story for anyone who reads this and is quietly dealing with pain and no answers. Let this be your validation that your pain is real and you deserve help. Keep searching for answers.”

Irwin is one of a number of high-profile celebrities — including Alexa Chung, Chrissy Teigen, Lena Dunham, Kayla Itsines, and Molly-Mae Hague — who 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 affect 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 model 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.

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 the Centre for Reproductive and Genetic Health (CRGH).

“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.”

How many people does endometriosis affect?

Currently, endometriosis is estimated to affect 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. The condition can run in families.

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 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.”

Dr Elgheriany adds: “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 per cent to 70 per cent of women living with the condition can get pregnant through natural conception. More research is needed into the link between endometriosis and fertility.

Can you still get endometriosis after the menopause?

According to Healthline, it becomes rarer due to the decline in oestrogen, and often resolves itself. However, between two to three per cent of women can still suffer symptoms.

Some women even develop endometriosis post-menopause.

Where can I find out more?

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), the Endometriosis Coalition (@theendo.co) aim to promote awareness and provide resources about the condition.