Uncommon Endometriosis Symptoms Often Gaslighted and Ignored

Endometriosis is a chronic, painful condition that affects as many as 1 in every 10 women. Symptoms occur as early as adolescence, but aren’t diagnosed for decades. Meanwhile, women try to cope with the debilitating symptoms that can cause infertility, painful periods, and long-term complications. Why does it take so long to diagnose endometriosis, and why do so many women feel like their symptoms are dismissed? Let’s find out what new tools are on the horizon, and why endometriosis is one of the most common women’s health conditions female patients say is buried under medical gaslighting.

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Endometriosis is painful, and difficult to diagnose

Around 10–15% of all women live with endometriosis, which is a chronic condition in which endometrial tissue grows outside of the uterus. Endometrial tissue is made up of cells similar to those that make up uterine tissue, so this tissue grows, bleeds, and creates scar tissue known as adhesions throughout the surrounding abdominal cavity.

These adhesions cause severe pain and other symptoms that can affect fertility and reduce the life quality of those who live with this condition. The exact cause of endometriosis remains unknown.

Despite this large number of women (many of whom are living with significant daily pain), it takes some women more than a decade to receive a diagnosis (1).

As many as six out of every 10 women with endometriosis may remain undiagnosed, and many patients feel they have their symptoms dismissed while pursuing treatment.

Read more: Managing Endo Pain Naturally

Why does it take so long to diagnose endometriosis?

There are numerous, complex reasons why women with endometriosis struggle to reach a diagnosis. It’s clear that something needs to change in the relationship between the medical community and women’s health. Some of the main issues make it harder for women with gynecological conditions to be diagnosed quickly and properly.

Everyone assumes it’s ‘just a painful period’.

This narrative is commonly used in medical gaslighting to dismiss symptoms and minimize concern. In reality, endometriosis is a highly-inflammatory disease that affects the whole body.

Misdiagnosis is common with endometriosis.

Endometriosis often resembles other conditions, like an autoimmune disorder, gastrointestinal problems, and others. Because endometriosis symptoms can affect so many parts of the body—including the intestines, bladder, entire pelvic cavity, and even the chest—doctors sometimes have a hard time diagnosing endometriosis quickly.

Diagnostic guidelines/tools are invasive.

Until recently, and still in some areas, a surgical procedure involving small incisions in the abdomen to insert a camera is considered the gold standard diagnostic tool to confirm endometriosis. Because there is no good noninvasive test for endometriosis, there is often a significant delay in diagnosis (2).

Some patients are likely ‘gaslit and ignored’

Pain associated with menstrual periods, or other hormone health problems is often normalized and dismissed in healthcare settings. When women seek help for chronic pain associated with or triggered by their periods, they’re likely to be told by their doctor that their experience is “normal” or “just part of being a woman” and they need to find ways to cope.

It’s estimated that up to 60% of patients who report painful periods have endometriosis, but often aren’t offered any further examination into underlying causes (3). First line treatment for period pain involves nonsteroidal anti-inflammatory drugs that don’t always work to reduce endometriosis pain (4). Or, stronger pain medication that carries unwanted side effects for many women.

These examples only reinforce that no matter how bad the menstrual pain, women should deal with it instead of seeking treatment.

Minimizing and dismissing pain

In 2020, one school in the U.K. caused controversy after suggesting girls should not miss school because of period pain (5). Administrators stated, “Learning to deal with a monthly inconvenience is all part of being a woman.”

This shows a total lack of understanding for how painful menstrual cramps can be, and highlights a huge disparity in the quality of treatment options and research into problems that impact women’s health.

This is even more pronounced in adolescents and young girls, who have no idea that their symptoms are not the norm. This makes it more likely that girls experiencing symptoms of endometriosis or other hormonal issues like PCOS, won’t seek the help they need.

Symptoms can happen any time, not during menstrual periods

Endometriosis has been found in every single organ in the body, and because of this, can cause symptoms that pop up almost anywhere—and they don’t only occur during a period (6). They can happen at any time. However, the most common symptom of endometriosis is pain.

Keep in mind that not everyone who has painful periods has endometriosis, and it’s likely we don’t have the full scope of every symptom.

Some atypical or ‘uncommon’ symptoms of endometriosis include:

No pain symptoms
Sciatic nerve pain (rear thigh and glutes)
Pelvic pain
Hip, leg, or back pain
Pain anywhere in the body (chest, abdomen, neck, shoulders) that happens during a menstrual period
Shortness of breath during your period
Acid reflux symptoms during your period

While these symptoms, and increased pain, often occur during your period, they can occur at any time throughout the menstrual cycle depending on where adhesions are located.

Watch: The Best Endometriosis Management Tools

How is endometriosis usually diagnosed?

The most reliable and preferred method to diagnose endometriosis is surgical visual inspection of pelvic organs (7).

How do doctors manage to get a visual of pelvic tissue? Well—as stated above—the gold standard is still laparoscopic surgery. This is a minimally invasive surgery that requires small incisions in the abdomen in order to insert a camera. The surgeon will look for endometriosis lesions and scar tissue and may remove them if they are found. A biopsy may also be taken during this surgery in order to confirm the diagnosis.

Not every doctor or surgeon is an expert in identifying endometriosis, however, and this has resulted in false negatives (i.e. you’re told you don’t have endometriosis when you actually do). It’s important that the doctor or surgeon examining the results know what they are looking for and can visually recognise the disease.

Your doctor may also perform other tests to help diagnose endometriosis:

Magnetic resonance imaging (MRI)
Pelvic exam
Transvaginal ultrasound
Blood tests (CA-125)

It’s important to note, though, that these tests can’t definitely confirm the presence of endometriosis. Depending on their results, they can be suggestive of the condition, but they also can’t rule it out.

The fact that laparoscopy (a surgery) remains the only way to diagnose endo for sure is frustrating for doctors and patients alike.

Related: PCOS Signs + Symptoms

Endometriosis vs. adenomyosis

Your doctor might also tell you that you have adenomyosis if you have endometriosis. They are two different conditions, but they often occur together.

Endometriosis is when the tissue that normally lines the uterus grows outside of the uterus. Adenomyosis is when the endometrial tissue grows into the muscle wall of the uterus.

Both conditions can cause heavy periods, and abdominal or pelvic pain. They can also make it difficult to get pregnant, and affect risk factors for other health issues like endometrial cancer.

New endometriosis guidelines will improve diagnosis, treatment

In a 2022 report, the European Society of Human Reproduction and Embryology (ESHRE) developed new guidelines (last updated in 2014) to help doctors better diagnose and treat endometriosis (8).

This is a big step forward, considering that up until recently, doctors often recommended pregnancy as a way to treat endometriosis (which is not an effective treatment, for the record) (9).

Due to recent advancements in imaging, risks during surgery, limited access to highly-qualified surgeons, and financial considerations, the ESHRE now only recommends laparoscopy if imaging results are negative and other treatments have proved unsuccessful or not appropriate.

As more places adopt these new guidelines, they will (hopefully) allow health care providers to expedite effective treatments. The updated guidelines included new recommendations for adolescent girls, preserving fertility, and considerations for menopause as well.

Watch: 7 Easy Steps to Hormone Detox

Endometriosis should be taken seriously

Endometriosis is a serious issue that millions of women suffer from, often in silence. The new guidelines for the diagnosis and treatment of endometriosis may help doctors identify endometriosis sooner, improving treatment. However, it is important to be an advocate for your own health and pursue pain symptoms. If you are experiencing any of the common symptoms of endometriosis, do not hesitate to talk to your doctor. You are not alone in this fight, and we will continue to raise awareness about this disease until all women have access to proper care.

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