Endometriosis experiences: The long, painful road to diagnosis
Written by Maria Cohut, Ph.D. on March 30, 2021 — Fact checked by Malgorzata Pachol
According to existing data, at least one in every 10 women live with endometriosis. Although this condition can have a serious impact on the quality of life, it often takes women years to have it diagnosed. Medical News Today speak to women living with this condition to find out more about their long journey to a diagnosis.
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This issue can affect all people assigned as female at birth, but it often goes undiagnosed, partly due to gender stereotyping.
Available data indicate that around 10–15% of all women live with endometriosis, a chronic condition in which tissue similar to uterine lining grows outside the uterus.
The severe pain and bleeding and other incapacitating symptoms that often accompany endometriosis mean that the life quality of those who live with this condition is impacted in serious ways.
Despite this, it can take anywhere between 4 and 11 years for women to receive the correct diagnosis, and as many as six out of every 10 cases of endometriosis may remain undiagnosed.
Medical News Today have spoken to three women with diagnosed endometriosis to find out more about their experience of obtaining a diagnosis: what made it difficult, whether the treatment they received was helpful, and how this chronic condition has been affecting their lives.*
For an informed perspective on the difficulties that accompany the task of raising awareness of the facts versus myths about endometriosis, we have also spoken to Jenneh Rishe, a registered nurse and founder of the nonprofit organization The Endometriosis Coalition.
Why does it take so long to diagnose?
The most recognizable symptom that accompanies endometriosis is debilitating pain, not just in the pelvic area but also of the lower back, during bowel movements and during or after sexual intercourse with vaginal penetration.
While the pain often occurs during menstruation, it can also occur between periods due to the lesions and scarring caused by endometriosis.
Alma, one of the women who spoke to MNT about their experience, said that she realized she might have endometriosis when “[t]he pain had moved from just my ovaries to my intestines and overall stomach area.”
“[A]fter many MRIs and ultrasound scans, they concluded that I must have endometriosis, based on symptoms alone,” she added.
“Some common misconceptions [about this chronic condition] are that endometriosis is just a bad period, when, in reality, it is a highly inflammatory, full-body disease,” Rishe told MNT.
“To date, endometriosis has been found in every single organ in the body. The symptoms range from abdominal pain to brain fog and fatigue, to chest pain and shortness of breath, to nerve pain and pain with urinating. The symptoms are all over the map, and they don’t only happen during someone’s period. They can be every single day,” she explained.
Because endometriosis can affect so many parts of the body — including the vagina and rectum, intestines, bladder, and diaphragm — doctors may misdiagnose it as a different chronic condition.
Another woman, Martha, also told us that it was only when she started to experience chronic pain between periods that she realized she might have a gynecologic condition.
“I’ve had painful periods my entire life, but for a long time, I’d never heard of endometriosis. Around my mid-20s, I started to experience pain more often, not just during my period,” she said.
“I just happened to hear about endometriosis online, on social media. At first, I didn’t identify with it, because I’d been told that period pain is normal. But as the severity of my symptoms increased, I started to wonder if maybe this wasn’t so normal. I believe I was 28 years old when the pain and other symptoms started happening daily and just didn’t stop. That was when I started looking into endometriosis more seriously and began to suspect that I had it.”
Another contributor, Lisa, told us that she had a similar experience: “I realized that I might have endometriosis after receiving abnormal results from a transvaginal ultrasound. I visited my general OB-GYN after experiencing abnormal bleeding and increasingly debilitating pelvic pain during both ovulation and menstruation.”
In her case, too, it took many attempts at a diagnosis until she received the correct one — and only then, it was after specifically seeking the advice of an expert in endometriosis.
“I was told that the shape of my uterus was suggestive of adenomyosis, and while doing some research with the help of […] various online support communities, I learned about the relationship between adenomyosis and endometriosis. My symptoms aligned with the most common symptoms of endometriosis, so I found an endometriosis excision expert in my area and sought his care.”
Currently, the generally accepted way of diagnosing endometriosis with certainty is through a laparoscopic surgery, which allows doctors to see the endometriosis lesions.
‘Everyone assumed it was just a painful period’
The misdiagnoses and wide array of symptoms may contribute to how long it takes healthcare professionals to diagnose this condition.
In Martha’s case, “it was almost 3 years between beginning to pursue a diagnosis and finally getting one.” For Alma and Lisa, it took well over a decade to receive a formal diagnosis.
“I was formally diagnosed with [endometriosis] around the age of 30, despite the fact that I’d had extremely painful periods since the age of 14,” Alma told us.
For her part, Lisa said: “I first sought care for the debilitating nature of my periods when I was around 16, and did not receive my diagnosis until I was 25. It’s hard to say when my symptoms officially started, but looking back, I would guess that I experienced them for well over 10 years before being diagnosed.”
Yet the complexity of endometriosis symptoms is only half of the story when it comes to the delays in diagnosing the condition.
When women seek help for chronic pain associated with or triggered by their periods, they often hear that this experience is “normal,” just a “bad period” that they have to find ways to cope with.
This was Alma’s experience, which she recalled with frustration. Even upon diagnosis, she said:
“I was offered no treatment apart from very strong pills, many of which [have] been discontinued since due to their dangerous side effects. […] Mostly, I was just told to deal with it. Everyone just assumed it was just ‘a painful period.’ Nobody seemed to think it was a condition, nobody regarded it as something that was even worthy of treatment. […] And I have seen a lot of gynecologists in my life, particularly in my teens and early 20s. It was just assumed that it was a ‘normal’ albeit very painful period, despite the fact that I would have pain and vomiting to the point of faint[ing] and [experiencing] visual hallucination[s].”
Alma’s experience ties in with worldwide reports of a gender pain gap — the phenomenon whereby women report more instances of chronic pain than men but are less likely to be offered timely pain relief by healthcare professionals.
Why should this be so? One review of the existing literature, published in Pain Research and Management in 2018, suggests that the answer may lie in the persistence of gender stereotyping the experience of pain.
Studies about pain and healthcare, the review shows, tended to make questionable value judgments about men versus women and their subjective perception of pain.
“[M]en were presented as being stoic, in control, and avoiding seeking healthcare. Women, on the other hand, were presented as being more sensitive to pain and more willing to show and to report pain, compared [with] men,” the review authors write.
This suggests that women’s experience of chronic pain may get dismissed as exaggerated, a result of subjective, emotional oversensitivity rather than an objective physical experience.