Endometriosis is one of the most commonly misdiagnosed and misunderstood conditions—despite the fact that it affects an astounding 1 in 10 AFAB between the ages of 15 and 44, according to the U.S. Office on Women’s Health, this is similar to the ratio of individuals diagnosed with diabetes!
Part of the problem is that endometriosis is commonly confused for bad menstrual cramps.
Many women muscle through their pain, assuming it’s normal; those who seek out the help of a doctor are not always taken seriously or given an accurate diagnosis.
How people with endometriosis experience pain
People experience endometriosis pain differently, but the most common symptom of the disease is pelvic pain.
The type of symptoms and severity of pain depends on where the endometrial-like tissue growths are located.
Nonetheless, endometriosis is the top cause of painful sex and pelvic pain.
Beyond pelvic pain, pain from endometriosis can present during or after sex (dyspareunia) as well as during urination or bowel movements.
Throughout the cycle, people with endometriosis can experience varying levels of pain in their lower back, abdomen, and thighs.
Often with endometriosis, the pain correlates with the menstrual cycle, starting one or two days before menstruation and lasts throughout the period.
Endometriosis-related menstrual pain can occur on one or both sides and vary in intensity.
The pain that some people with endometriosis experience is not cyclic.
Instead, some people with endometriosis have constant pain, regardless of where they are in their menstrual cycle.
People can have endometriosis pain that is persistent and interrupts their ability to partake in their daily activities.
However, the intensity of endometriosis pain does not correlate to the individual’s severity of endometriosis.
This means those who have advanced endometriosis may not experience severe symptoms and can live without a diagnosis, while others may suffer from intense pain without the disease being clinically advanced.
One observational study that explored pelvic pain among people with endometriosis found that around 11% of people with confirmed endometriosis had no pain.
The rest of the participants had varying pain levels.
The pain was found to be more dependent upon the depth of the endometriosis rather than the stage of the disease.
The pain many people with endometriosis experience is a result of the endometriosis growths becoming inflamed or beginning to bleed.
The swelling of the growths may happen monthly in correspondence with menstruation. This can become extremely painful because the bleeding and swelling occur in an area where it cannot leave the body easily.
Endometriosis growths can cause various problems that may be related to pain.
If the growths block the fallopian tubes, the blood formed in the ovaries can get trapped and form cysts.
The continued growth of endometriosis growths can lead to the development of scar tissue or adhesions (a tissue type that can bind the organs together) that may enhance pelvic pain and may even make it difficult to conceive.
Endometriosis flare-ups defined
With chronic diseases, pain and symptoms can be present and persistent for long periods.
A flare-up, also known as a flare, occurs when the symptoms of a chronic disease that have been present for some time become exacerbated.
Flares intensify symptoms of the disease and eventually subside after a while. An endometriosis flare-up can be excruciating to undergo.
Chronic and acute endometriosis pain can vary between dull, throbbing, and sharp, and people with endometriosis can feel changes in their pain levels.
Flares may happen more or less often for different people, and they can be triggered for different reasons.
Sometimes the changes in the intensity of symptoms are predictable and other times they can come without warning.
The menstrual cycle influences flares in pain for some people with endometriosis. For some, physical activity can also be a trigger for flares.
Flare-ups can be debilitating to people with endometriosis, intensifying their pain and interrupting their sleep.
Some people with endometriosis experience flare-ups as intense pain in the thighs, kidneys, and stomach.
Endometriosis does not always remain an invisible disease, and when a flare occurs the pain and symptoms can become impossible to hide.
A flare-up can manifest in the form of an “endo belly,” in which the stomach becomes swollen from bloating and inflammation.
Some people with endometriosis claim that their endo belly can swell so much that it makes them look pregnant. The endo belly can cause discomfort and negatively impact confidence.
Here’s what endo feels like, according to those who experience it on an almost daily basis.
The pain is nearly constant
“For me, the pain feels like I’m being prodded with a searing hot stick—like what they use to brand cows with, constantly and relentlessly. It’s the kind of pain that overcomes you from the second you open your eyes in the morning until the second you close them at night, and usually, somehow, even after that.”
—Orla D, 27
Expensive surgeries are common
“I’d describe the quality of pain as sharp. It’s deep, searing, and uniform. It feels like menstrual cramps dialed up to a 9. It’s been extremely debilitating, to the point of spending $10k on the second surgery in California with a specialist who was aggressive about removing large margins of the affected endometrial tissue—all out-of-pocket.”
—Maleah J, 50
The pain is more than physical
“As a practitioner, I describe endometriosis pain [as] sharp, stabbing, achey, twisting, or burning, and it may or may not correlate with your period … As a patient, I would [add that] endometriosis pain is like a gut-wrenching bomb that goes off in your insides. Its shrapnel tortures you physically, emotionally, and financially forever.”
—Dr. Sallie Sarrel, PT, ATC, DPT, pelvic physical therapist and endometriosis advocate in New York and New Jersey
Your bathroom habits might be affected
“Many women suffer from lesions of endometriosis near their bowels or in areas that make bowel movements sensitive. In my experience, during my cycle it would hurt so intensely to go to the bathroom that sometimes I would try to avoid it.”
—Amanda L, 33
It can affect your social life
“Endo is extremely debilitating, life-changing, and isolating. The pain is so severe even meditation doesn’t help.”
—Jess M, 29
Even your clothing choices are affected
“The day-to-day pain can be described as sharp, shooting abdomen pains, paired with period cramps. My belly would become bloated and I would bleed very heavily, large blood clots, even when not on my period for days. Seeing these blood clots made me very weak. Also, wearing jeans or anything that pressed into my lower abdomen was out of the question due to the pain the pressure would cause.”
—Tara L, 34
Depression is common
“I have period cramps three weeks a month, [and] it makes me tired and depressed. It limits my life [because] I don’t have as much energy as I used to, and I’ve gained weight. I don’t want to appear as lazy or moody, but my mind feels constantly cloudy and it’s hard to pretend to be happy.”
—Jennifer C, 33
The pain isn’t always the same
“The endometriosis has left me constantly in pain. Sometimes it is a dull, lingering pain, and other times it is a sharp, shooting pain through my lower abdomen. It causes me fatigue, extremely painful bloating, fever, irregular periods, pain with intercourse, and so much more.”
—Brianna F, 27
How women, BIPOC, and LGBTQIA+ people’s pain is downplayed by healthcare providers
Downplaying the concerns of women is a broadly recognized problem within the realm of healthcare.
Compared to men, both doctors and nurses prescribe less pain medication to women post-surgery. This occurs, despite reports of pain being both higher and more frequent among women.
According to a study from the University of Pennsylvania, women wait an average of 16 more minutes compared to men to receive pain medication in the emergency room.
They are also more likely to have their pain dismissed as emotional distress.
Pain dismissal is no stranger to people with chronic illnesses.
A large survey was conducted for women who experience chronic pain. The results show that 84% of women with chronic pain feel discriminated against based on their sex when seeking care.
It is not just women who are at risk of receiving less than optimal healthcare.
In the United States, in particular, disparities in health and healthcare take a toll on non-white and non-CIS populations as well.
In the United States, healthcare does not look the same for all races and ethnicities. Minorities are less likely to receive optimal treatment compared to whites.
The diversity of the workforce within healthcare is not representative of the diversity in the population.
Sexual minorities face the double burden of having more health issues and physicians who are not trained sufficiently to treat them appropriately.
This community faces barriers within their families and communities that present further challenges.
Hesitation from LGBTQ+ individuals and their physicians to communicate openly can perpetuate their health challenges.
Healthcare providers are not adequately trained to accommodate the needs of this population, which leaves room for discrimination and suboptimal care.
How to be taken seriously by your healthcare provider
It can be challenging to put your experience with pain into words during a short visit with a physician.
Patients want to be able to explain the intricacies of their pain, and a number scale does not paint the whole picture for their healthcare provider to understand their experience.
Research about pain has found that there are at least five aspects to describing pain that are important to capture a patient’s experience.
These areas are pain intensity, pain quality, pain location, pain interference, and pain temporality. Even though many people experience pain, there continues to be a gap when it comes to communicating about pain between patients and healthcare providers.
Even though they want to gain as much insight as possible, patients have reported sharing their concerns during less than a quarter of visits with a healthcare provider.
Making physicians understand their pain is even more difficult for people with disabilities. The complexity of the interaction between their disability and pain makes it harder for people with disabilities to explain their experiences.
On top of this burden, practitioners have expressed feeling less comfortable communicating with patients who have physical disabilities.
Communication is at the core of successfully understanding and managing pain.
This communication needs to occur between patients and healthcare providers, but current research suggests this is challenging. It may be daunting to describe the pain on the spot during a doctor’s visit.
One expert recommends writing down what the pain feels like and using the note to help yourself when you see your healthcare provider.
It can be helpful to the physician if you write down not only what the pain feels like but also how it impacts your daily life.
Writing down questions beforehand can also help ensure that you won’t forget to ask about the things that are important or concerning to you.
It is important to be as descriptive as possible when explaining pain to healthcare providers.
Vague descriptions make it hard for them to pinpoint what the problem(s) may be.
We at ELANZA know and understand the importance of finding an endometriosis specialist that understands your pain and does not dismiss any of your concerns and that is why we built a care platform that addresses this gap.
