Why is it so hard to get diagnosed with endometriosis?
Endometriosis affects 1.5 million women in the UK but can take an average of up to seven years or longer for a diagnosis. Why does it take so long? Nana Okosi asks.
Credit: Unspalsh, huha inc.
Endometriosis is like an uninvited guest invading your space, except instead of just occupying your home, it takes over your reproductive organs by growing extra tissue in areas like the ovaries and fallopian tubes. The unwelcome visitor also brings with it the unpleasant symptoms of painful period cramps, irregular or heavy menstrual flow, and painful sex.
And beyond just the discomfort endometriosis can bring to everyday life, it can also have an impact on fertility. While ultimately there is currently no cure for the condition, there are thankfully some ways to manage symptoms.
Some of the ways endometriosis is treated is with painkillers or hormonal contraception, such as the combined pill or implant. However, in severe cases, surgical intervention may be necessary. This is usually through keyhole surgery, also known as a laparoscopy, which is when small cuts are made in the stomach to extract and destroy endometriosis tissues. As well as treating endometriosis, a laparoscopy can also confirm a proper diagnosis by the small cuts to help to find endometriosis tissues instead.
“According to Endometriosis UK, 1 in 10 women suffer with endometriosis and it is the second most common gynaecological condition in the UK.”
In the worst cases, some women may even require a full or partial hysterectomy of the organs affected by endometriosis, like the colon or womb, which have to be removed.
According to Endometriosis UK, 1 in 10 women suffer with endometriosis and it is the second most common gynaecological condition in the UK. Despite this, most women have had to wait up to seven years or even longer for a proper diagnosis. And the situation is even worse for black women who are 50% less likely to be diagnosed with endometriosis compared to white women. Black women are also reported to receive poorer care and can even wait longer than average for a diagnosis.
It’s pretty concerning that it can take such a long time before getting a diagnosis for endometriosis. It raises the question as to whether there is enough awareness and research out there for people to understand more about it.
Dr. Hana Patel, an NHS GP, says that endometriosis is particularly difficult to diagnose because it can show up in many different ways.
“It can cause different or no symptoms in people; other [reproductive] conditions are often thought to be diagnosed first. In addition, some women may not even experience pain, and they may have a lot of endometriosis tissue elsewhere in their body.”
A recent study by Manchester Metropolitan University found that women with endometriosis felt dismissed and gaslighted by doctors. This is not surprising since there’s usually been an assumption that women are simply being overly ‘dramatic’ when they complain to doctors about painful period cramps.
Although health professionals encourage you to see a doctor if you have period cramps that prevent you from engaging in everyday activities, it’s easy to see why women might hold off visiting a health professional when their pain is so frequently dismissed.
Kiran, 25, first reported painful period pain to her doctor when she was 15. After countless visits to the doctor where she complained of severe period pain, she was eventually diagnosed two years later.
“Women’s health can often be overlooked by doctors, specifically male doctors, when dealing with period pain” she says.
“I also think that endometriosis symptoms are common for other women’s health issues, so it’s a lot of trial and error to find the root of the problem. It took me years to get my own diagnosis, and it involved blood tests, ultrasounds, and pelvic examinations.”
Jules, 24, also has endometriosis, which she found out about by chance when she was 19 after visiting a gynaecologist for abdominal pains.
“There was never any mention that I could potentially have endometriosis when I was seeing my doctors, so maybe they’re genuinely not as aware as they should be.”
“When they did a scan at the gynaecologist, it turned out I had an ovarian cyst. A year later, I was scheduled for an operation to remove it; it was during this operation that they discovered I had endometriosis and removed all of the tissue,” she says.
“Endo symptoms can often be dismissed as gastrointestinal problems or generally health anxiety, and I definitely think it’s easy for doctors to gloss over and favour diagnoses that are easily ‘diagnosable’, as it's just easier and faster.”
And Jules believes that there is a lack of education regarding endometriosis. “There was never any mention that I could potentially have endometriosis when I was seeing my doctors, so maybe they’re genuinely not as aware as they should be.”
It’s 2024, and despite there being more widespread knowledge and information about endometriosis than ever before, it’s clear that more still needs to be done to provide women dealing with endometriosis with the right care and support without being dismissed by health professionals.
That being said, there are some charities, support groups, and campaigns for women suffering from endometriosis. For example, the campaign ‘Just a Period’ offers support to those dealing with painful periods by sharing valuable information and resources on their website. The Endometriosis Foundation also helps to enhance the outcomes of women with endometriosis, through spreading awareness and campaigning for change.
While these are hopeful signs that the narrative is changing, the exceptionally long wait time for diagnoses proves that there still needs to be change within the medical field itself. Until women’s pain is taken seriously, endometriosis will remain a painfully undiagnosed condition for many.