Why Endometriosis Takes So Long To Diagnose and Treat

Endometriosis is an estrogen-dependent gynecological condition characterized by the presence of endometrial-type tissue lying outside the uterus, typically within the pelvic region. It is a chronic, progressive inflammatory condition that mainly affects women of reproductive age (15–49 years). Up to 1 in 10 women are believed to have the condition, although it is estimated that as many as 60% of endometriosis cases remain undiagnosed.

Endometriosis can have devasting impacts on all aspects of an individual's life including education, career, (sexual) relationships, fertility and quality of life. Although some people with endometriosis do not experience any symptoms, the condition is characterized by severe pelvic pain, painful periods, painful bowel movements, pain when urinating, painful sex, difficulty getting pregnant and fatigue.

Despite the progressive nature of endometriosis, a correct diagnosis takes an average of 8 years and 10 months. This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage – making early diagnosis crucial. 

So, why are there such long delays in obtaining a diagnosis? What are the diagnosis procedures? And how can healthcare providers improve the diagnosis experience for thousands of women?

What causes endometriosis?

Despite its high prevalence, the cause of endometriosis remains unknown. Although several theories attempt to help us understand the cause of endometriosis, none fully explain why the disease occurs. A combination of the following factors could influence endometriosis development in some individuals:

Retrograde menstruation

Retrograde menstruation occurs when some of the endometrium flows backward through the fallopian tubes and into the abdomen. The tissue then implants itself on organs in the pelvis and grows, causing endometriosis.

Genetic predisposition

Some research suggests that endometriosis is more susceptible in some individuals compared to others due to genetic predisposition, but the causes of this are unclear.

Immune dysfunction

In some cases, it is thought that the immune system is unable to “fight off” endometriosis. Although there is no established causal relationship, many individuals with endometriosis appear to have suppressed immunity to other conditions.

Environmental causes

Certain toxins in the environment are thought to affect the body, immune system and reproductive system, leading to the development of endometriosis. One of these toxins thought to cause endometriosis is dioxin, although evidence in humans is limited.

The long road to diagnosis

A 2024 report published by Endometriosis UK, highlighted that achieving a diagnosis for endometriosis now takes almost a year longer than it did pre-pandemic. Based on a survey of 4,371 people with an endometriosis diagnosis, the report showed a rise in diagnosis times in all 4 UK nations since 2020. These diagnosis times now average 8 years 10 months in England and Scotland, 9 years 5 months in Northern Ireland and 9 years 11 months in Wales.

The journey to a diagnosis is often lengthy, circuitous and arduous, with many individuals seeking help from various sectors of the health system across many years.

The report detailed: “74% of individuals had attended 5 or more GP appointments with symptoms prior to diagnosis. Almost half of all respondents – 47% – had visited their GP 10 or more times with symptoms prior to diagnosis. 20% reported seeing a gynecologist 10 or more times before being diagnosed.”

“Worryingly, 78% of our respondents who later went on to receive a diagnosis of endometriosis had experienced one or more doctors telling them they were making a ‘fuss about nothing’ or similar comments and many had the severity of their symptoms questioned by healthcare practitioners,” the report stated.

Although these average diagnosis times are unacceptable, a prompt diagnosis can and does happen in some cases. Some diagnoses can happen in under a year, with 10% of survey respondents reporting that GPs mentioned they suspected endometriosis at either the first or second appointment where symptoms were discussed.

Despite this, prompt recognition of symptoms and support in getting a diagnosis should be the norm, not the exception.

Why are diagnosis times so long?

The increase in diagnosis times can be attributed to several causes. Despite having a significant impact on the NHS, the COVID-19 pandemic can only partially explain the increase in diagnosis times. However, gynecology wait times increased by the highest percentage of any specialty during the pandemic – highlighting that menstrual and gynecological health is not viewed as a priority by decision-makers.

Healthcare practitioners’ lack of awareness and understanding of endometriosis and its symptoms, or even lack of belief that the disease exists, also hinders the ability to achieve a diagnosis. Resultingly, a timely diagnosis is far less likely with individuals seeking help for their endometriosis commonly having their concerns dismissed or diminished.

A lack of awareness also stems from the patients themselves. According to Endometriosis UK, individuals waited an average of three years and nine months before first seeking help with their symptoms. The low levels of population awareness regarding endometriosis and its main symptoms mean people are unlikely to suspect they have the condition or push healthcare providers for a timely diagnosis.

Societal and cultural dismissal of period pain as “normal”, or not serious, can result in those with symptoms not seeking medical help, especially when they know the NHS is under pressure.

Diagnosis procedures

There are several different procedures individuals may go through to achieve a diagnosis of endometriosis, including surgical and non-surgical techniques.

Laparoscopy remains the gold standard approach for diagnosing endometriosis. This is a surgical procedure involving a small incision in the abdomen to allow for the insertion of a thin tube with a light and a camera. This allows for visualization of the tissues in and around the uterus to check for signs of endometrial tissue growth. If suspicious, abnormal, tissue is found, a biopsy is performed to sample the tissue so it can be looked at under a microscope by a pathologist. A biopsy is required for definitive diagnosis of endometriosis.

While effective, surgical procedures require general anesthesia and carries risks that make it inaccessible for many women. Currently, no procedure can be done to diagnose endometriosis without surgery. However, imaging and biomarker studies can be useful to look for signs of endometriosis.

Recent research into better diagnostics

Imaging techniques like ultrasound or magnetic resonance imaging help detect advanced lesions but often miss smaller implants or adhesions, particularly in early disease stages.

Recently, a new blood test was developed by researchers from the University of Melbourne and the Royal Women’s Hospital, in collaboration with Proteomics International Laboratories, that could offer a novel tool for early-stage endometriosis detection and greater accuracy than the CA-125 blood test.

Promising findings by researchers at Baylor College of Medicine suggested that stool metabolites found in women with endometriosis could be the basis for a non-invasive diagnostic test, as well as a potential strategy to reduce disease progression. They discovered a combination of bacterial metabolites that are unique to endometriosis.

Among them was a metabolite called 4-hydroxyindole. “This compound is produced by ‘good bacteria,’ but there is less of it in women with endometriosis than in women without the condition,” said Dr. Chandni Talwar, a postdoctoral associate in the Ramakrishna Kommagani Lab.

“These findings are very exciting,” Talwar said. “Our study is the first to discover a unique metabolite profile linked to human endometriosis, which brings us closer to better understanding the human condition and potentially identifying better ways to manage it.”

Furthermore, extensive studies also showed that administering 4-hydroxyindole to animal models of the disease prevented the initiation and progression of endometriosis-associated inflammation and pain – an avenue for treatment that is yet to be explored in humans.

Treatment options for endometriosis

Similar to diagnostic techniques, there are surgical and non-surgical treatment options for individuals with endometriosis. However, none of these options offer a cure. The right treatment option depends on many factors, including age, symptoms and whether the individual would like to have children.

Hormone therapy and pain management (i.e., nonsteroidal anti-inflammatory drugs) are typically the most common non-surgical treatments for endometriosis. Like the uterus lining, endometriosis usually responds to estrogen and progesterone – the hormones that control the menstrual cycle. The natural fluctuations of these hormones can increase the activity of endometriosis and aggravate symptoms. Hormone therapy – commonly taken as pills, injections or a nasal spray – can alter or stop the production of certain hormones and can lessen endometriosis “flare-ups.” Of note, hormonal therapy can alter your ability to get pregnant, so this treatment option may not be appropriate for everyone.

For patients with advanced endometriosis, persistent pain unresponsive to other treatments or those trying to conceive, surgery may be necessary. Laparoscopy is the most common surgical approach for treating endometriosis, offering faster recovery and minimal scarring compared to open surgery.

In rare cases, a more invasive procedure known as a laparotomy may be required. Unlike laparoscopy, this approach involves a larger abdominal incision to access and remove endometrial tissue. While less common, laparotomy may be necessary for severe cases of endometriosis. Both laparoscopic and open surgical removal of endometrial tissue can provide short-term pain relief, however, symptoms may return over time.

A hysterectomy – surgical removal of the uterus – may be recommended as a treatment for endometriosis in certain situations. Depending on the severity of the condition, an oophorectomy, or removal of the ovaries, may also be advised, either alongside or independent of a hysterectomy.

Pregnancy is no longer possible following a hysterectomy. For individuals undergoing oophorectomy while retaining the uterus, in vitro fertilization may still be an option. Either the patients' eggs are harvested before surgery and preserved for future fertilization and implantation, or donor eggs may be used.

Recommendations for improving diagnosis times

Endometriosis UK’s report highlights that much more needs to be done to improve the diagnosis of endometriosis. The report includes several recommendations to reduce diagnosis times. One key recommendation is for the UK government to commit to a target of reducing the average diagnosis time for endometriosis to one year or less by 2030. Additionally, NHS commissioners and providers are urged to take immediate action to reduce gynecology waiting times.

The report also emphasizes the importance of ensuring that all healthcare practitioners receive proper training on menstrual health and endometriosis awareness. Another recommendation is increased investment in public health education campaigns to help people recognize the most common symptoms of endometriosis. Lastly, the report calls for greater investment in research to better understand the causes of endometriosis, improve treatment options and develop more effective diagnostic methods.

To truly make a difference, governments, healthcare providers and advocacy groups must work together to ensure that those suffering from endometriosis receive timely diagnoses and effective care. By prioritizing menstrual health and addressing the barriers to diagnosis, we can help countless individuals lead healthier, pain-free lives.