Woman Misdiagnosed for Years Before Discovering Source of Severe Pain

A woman suffered with debilitating symptoms for more than a decade before doctors finally diagnosed her with endometriosis.

Chloe Durrington, 26, had endured painful periods since the age of 14 but said she was repeatedly misdiagnosed and that her symptoms were brushed under the carpet. Endometriosis is a long-term condition where the lining of the womb, or uterus, grows in other places, causing pain in the pelvis and sometimes fertility difficulties.

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"I have stage four endometriosis," Durrington, who was diagnosed last year, told Newsweek.

"I started suffering from extremely painful periods and heavy bleeding when I was 14 years old, but I was always told by doctors that what I was experiencing was completely normal.

"Over the next eight years my symptoms got progressively worse and so I traveled back and forth from doctors appointments, but I was still getting nowhere. I was constantly told that my pain was 'normal', but I knew that it wasn't," she said.

"I knew that the pain was not 'in my head' or that I was 'just being dramatic.' So, after researching online, I came across a condition called endometriosis and realized that I had every single symptom. Fast forward to 2020, and after arguing with my doctor I was finally referred to gynecology. The downside was that the waitlist to be seen was three years long," she added.

Durrington had her first appointment with a gynecologist in 2023.

"She did an internal ultrasound and discovered that I had a large cyst on my left ovary. This appeared to be a 'chocolate cyst,' which is associated with endometriosis, however the only way to officially diagnose this is with surgery."

"I've since had two surgeries and this confirmed that I have stage four endometriosis. Stage four because it has progressed so much over the last 12 years. I'm also in the early stages of adenomyosis too. I still need another surgery to remove my left ovary due to it being beyond repair," she added. Adenomyosis is a condition where the womb's lining starts growing into the muscle in its wall.

Detecting Endometriosis

Researchers estimate that at least 11 percent of woman in the United States—or more than 6.5 million women—have endometriosis, according to findings by the Office on Women's Health. World Health Organization figures show it affects roughly 190 million women and girls of reproductive age globally.

The condition sees tissue grow outside the uterus. It can start at the point of a person's first period and last until they reach menopause. The endometriosis cells growing in other parts of the body, like the pelvic region, ovaries or fallopian tubes, cannot be removed by the body and instead build up. This is in turn causes inflammation, pain, and the formation of scar tissue, which can also create fertility difficulties.

"You can get pregnant but you may need reproductive assistance," board-certified obstetrician and gynecologist Sameena Rahman told Newsweek.

"Endometriosis can impact fertility, particularly due to pelvic adhesions and other factors, and it can be estimated that anywhere from 30 to 50 percent of patients with endometriosis may have sub-fertility or infertility," she added.

Many of those with endometriosis list heavy menstrual bleeding as one of the most challenging symptoms that they have to deal with.

While the cause of the condition is still unknown, and there is not yet a cure, its symptoms can be treated with medicine and, in some cases, surgery. The latter is a route that Durrington, who lives in the U.K., decided to take after her symptoms had been ignored for so long that her condition progressed from stage one to stage four.

Durrington finds it "crazy" that if the cyst hadn't been discovered on her left ovary, she still may not have had a diagnosis. And some woman have to wait for longer due to the requirement of surgery to secure a diagnosis.

"Endometriosis itself is usually undetectable on ultrasounds, blood tests, and sometimes even MRI scans," Durrington said.

Why Is Endometriosis Often Misdiagnosed?

Dr. Daniel Bodri, a consultant obstetrician and gynecologist, spoke with Newsweek about the condition and why it is often overlooked by medical professionals.

"Diagnosing endometriosis can be difficult as symptoms can both vary and be similar to those of other conditions," Bodri told Newsweek.

"However, if you experience any of the symptoms of endometriosis, you should see a general practitioner. Do consider writing down your symptoms in a diary to help analyze when and how regularly they occur."

"You may be recommended treatments or referred to a specialist for further tests. The only way to be certain you have endometriosis [is] through a laparoscopy which can show patches of endometriosis tissue," he added.

Bodri went on to say that although there is no cure for endometriosis, its symptoms can be managed well through a variety of treatments such as painkillers, surgeries and hormonal medications such as the contraceptive pill. However, as Newsweek determined previously, the latter option can prove divisive due to its own potential side-effects.

There have also been scientific breakthroughs which can aid our understanding of the condition.

A 2023 University of Oxford study which included DNA from 60,600 women with endometriosis and 701,900 without, revealed "compelling evidence" of a shared genetic basis for endometriosis and other types of pain seemingly unrelated to the condition, including migraine, back pain, and multi-site pain.

'I Want To Raise Awareness About the Condition'

In recent years, celebrities like Mandy Moore, Chrissy Teigan, Lena Dunham, Padma Lakshmi, Alexa Chung, Halsey and Emma Roberts have all spoken out about their experiences with the condition.

Actor Roberts, star of Madame Web and Holidate, spoke to Cosmopolitan U.S. in 2021 about having to switch to a female doctor to finally get an endometriosis diagnosis in her late 20s.

"[After that] there was validation that I wasn't being dramatic," she told the magazine at the time.

Durrington, too, decided to speak out on social media to help raise awareness of the condition and soon found that many others have gone through the same experience as her.

"After my first surgery and delayed diagnosis, I decided to make an Instagram account to support others going through what I have been through, and to raise awareness about the condition," said Durrington, who posts under the name Endo Chloe, on the account @endometriosischlo.

"I was so shocked at how little people know about this condition, even though it affects every one in 10 of those who menstruate."

Durrington opens up on the social media platform to over 11,000 followers about her life as a "chronically ill girlie." In a bid to lift the curtain on what it's like to be in near-constant pain yet still "not taken seriously," she regularly posts memes about dismissive doctors.

One of them has become a viral sensation and sparked a flurry of comments on the gender health gap and where that leaves those waiting to be seen for suspected endometriosis.

The video, which was shared online on February 23, poked fun at how Durrington's doctor had repeatedly told her that "period pain is normal" after she'd detailed her most severe symptoms.

The post has been liked more than 149,000 times since it was shared to social media, and prompted viewers to voice their similar experiences as well as their thoughts on the gender health gap in the comments section.

One user wrote: "'I've been in this field for 20 years', yeah but without uterus, right?"

Another added: "We need to normalize male doctors using a period or pregnancy simulator before they can get a medical degree."

"Discomfort is normal. Throwing up and passing out from excruciating pain is not normal," a third user shared.

A different user touched on how birth control is frequently offered to women who suffer from excruciating menstrual pain.

"Here, take some birth control," they jibed.

Last year, Newsweek spoke with several women who each claimed that they felt like birth control had been dished out to them as a one-size-fits-all solution for their hormonal or menstrual troubles, often without being fully informed of the associated risks, some being as serious as hepatic adenomas—rare tumors of the liver.

Durrington said of the popularity of her post: "I know that memes are very popular at the minute so I decided to create this video as a little joke about how I was told my painful periods were 'normal' for so long, when I actually had a severe condition, in the hope it would reach others who were struggling too to make them aware of endometriosis."

"I did not expect it to go viral at all but since it has, I have had so many messages from others who have been told the same and asking for advice. I'm so glad I'm now able to help others who are going through similar to what I've been through."

Durrington is also hopeful that more will soon be discovered about endometriosis, and that those who strongly suspect they are suffering from it can have their pain validated at an earlier point in their journey to a diagnosis.

She said: "Endometriosis is listed as one of the top 20 most painful conditions and yet it is still not taken seriously. Perhaps by raising awareness for it, this will change in the future."

Update 05/14/24, 8:27 a.m. ET: This article was updated with additional comment from obstetrician and gynecologist Sameena Rahman.

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