The conversation around endometriosis may be more common than ever, but the diagnosis rate in the UK isn’t improving. In 2017, it took on average 7.5 years for a diagnosis and in 2020 an inquiry by MPs found that the rate hadn’t improved in a decade. Affecting one in 10 women in the UK, the inquiry found failings in both diagnosis and care. More than 10,000 people took part which found that 58% of people visited their GP more than 10 times before a diagnosis, and 53% went to A&E with symptoms before being given a diagnosis. Unsurprisingly, the people also reported that their mental health, education and careers had been gravely affected, too. 

Below, Dr Ellie Rayner, founder of The Maternity Collective, shares her expert advice about the diagnosis, symptoms, treatment and causes behind the condition during Endometriosis Awareness Month. 

What is endometriosis?

“Endometriosis is a common condition affecting around 1 in 10 women in the UK, and is where endometrial-like tissue – which usually grows and lines the inside of the womb (uterus) – is found outside womb, on other internal areas of your body such as your ovaries, fallopian tubes or the lining of your tummy,” Dr Rayner tells Elvie. “It is a long-term condition and as it is hormone dependent, usually affects women during their reproductive years. During the menstrual cycle, these areas of endometrial-like tissue respond in the same way as the lining of the womb to the hormonal changes that cause you to have a period and bleed. Unfortunately, unlike the lining of your womb, there is nowhere for this blood to leave the body, which can result in pain, inflammation and even scarring.”

What are the symptoms of endometriosis?

The most common symptoms range from pelvic pain or lower abdominal pain to painful periods which can sometimes be irregular or heavy. “The severity of the symptoms that you experience, doesn’t always correlate to the severity of the disease or degree of endometriosis seen within the body. Some women have no symptoms at all, and we find endometriosis when performing surgery for another reason, such as women undergoing fertility treatment,” explains Dr Rayner. “Some women may report pain all the time, throughout their cycle or day-to-day life, whereas others may find their symptoms come and go. Pain during sexual intercourse or related to your bladder, bowels or lower back may also be suggestive of endometriosis, so if you have anything that doesn’t feel right it is important you speak to your GP as soon as possible. Endometriosis symptoms also often get better during pregnancy, so if this happened to you, this also might be more suggestive that endometriosis is the underlying cause of your symptoms. 

She continued: “Unfortunately, because endometriosis has a wide variety of presentations that can be similar to other gynecological and abdominal conditions, such as pelvic inflammatory disease or irritable bowel syndrome, it can make it harder to diagnose and may mean other conditions are tested and treated for first, delaying the diagnosis.”

How is endometriosis treated?

The good news is that there are several treatment options available to women. “Endometriosis can only be diagnosed definitively by a gynecologist during an operation looking inside your tummy,” explains Dr Rayner. “But as this is invasive and can carry the risk of complications and there can also be a delay while waiting for surgery, your GP or gynecologist is likely to suggest other, non-surgical treatments first.

She continued: “If pain and discomfort is your main issue, then pain killers either bought over the counter or prescribed by your doctor may be sufficient to manage your symptoms. As endometriosis is hormone driven, one of the treatment options is hormonal treatments such as the combined oral contraceptive pill (COCP), an intrauterine system (IUS) or the progesterone implant or injections. These hormonal options are used to reduce or stop you ovulating (releasing an egg from the ovary) and therefore reduce the hormonal stimulation of the endometriosis allowing it to shrink. Unfortunately, these types of hormonal treatments are contraceptive, so are not suitable if you are trying to conceive. If painkillers or hormonal treatments do not control your symptoms then you may be referred to a gynecologist who may recommend surgery to formally diagnose and treat or remove areas of endometriosis. Surgery is usually a key hole operation (laparoscopy) and areas of endometriosis are destroyed or removed while you are under a general anesthetic. Unfortunately, there can be more severe cases where major, more complicated operations are required and you may be referred to a specialist center for this type of operation if necessary.”

Additionally, some women who suffer from the disease have sought alternative solutions, too. “Many women find other, non-medical treatments can help such as exercising, changing your diet or physiological therapies and counseling,” says Dr Rayner. 

Writer-director Lena Dunham experienced such chronic pain from endometriosis – which she spoke about frequently – that she underwent a total hysterectomy aged 31. “In August, the pain becomes unbearable. I am delirious with it, and the doctors can’t really explain… I check myself into the hospital and announce I am not leaving until they stop this pain or take my uterus,” she wrote in Vogue in 2018. Similarly, Alexa Chung shared her diagnosis with her millions of followers on Instagram in 2019. “I don’t want to belong to any club that would accept me as a member, but here I am,” she posted, alongside a photo of her in a hospital with the hashtags #endometriosisclub #sorryifyouhaveittooitsucks and #endometriosisawareness. In Sally Rooney’s debut novel, Conversations with Friends, the central character, Frances, is diagnosed with endometriosis, too. With a TV adaptation set to hit the small screen in May 2022 on BBC3 and Hulu, it’ll certainly help to draw more awareness of the disease. 

But new guidelines around the disease are certainly encouraging. Set out by scientists at University College London and University College London Hospitals – and published by The European Society of Human Reproduction and Embryology (ESHRE) – it aims to better aid women with treatment, support and diagnosis. “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,” said professor Saridogan, who has been working with ESHRE and other members of the Guideline Development Group since 2003. “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.” 

In the new guidelines, there are 109 diagnosis recommendations, which look at the diagnosis, management, endometriosis in adolescents and postmenopausal women and more. Additionally, there will be guidelines for women who are experiencing pain and fertility issues in line with the condition. 

For more information and support, visit https://www.endometriosis-uk.org and/or https://www.endofound.org/