Endometriosis is one of the most under-funded, under-researched conditions in the US, yet 7 million American womxn live with it. Despite these numbers, inadequate funding continues to breed a general lack of awareness and understanding in the medical community. And a lack of understanding means that people with endo spend years trying to get a diagnosis, all the while struggling to manage their pain on their own. On average, there’s a 7-year delay between the onset of symptoms and diagnosis.
Why is this gap so massive? Many believe that administration after administration continues to display low regard for womxn’s issues. Others blame bias in the healthcare system. Doctors aren’t taking womxn seriously when they complain of severe menstrual pain, one of the most common symptoms of endometriosis. A dangerous, persistent belief that period pain is normal guides patient care. But for 1 in 10 womxn worldwide, period pain is an important clue that must be taken seriously.
Some womxn have found themselves under the care of physicians that have never even heard of endometriosis. Others go years with a misdiagnosis. Doctors will prescribe hormonal therapy to alleviate pain without seeking a diagnosis. While sometimes an ultrasound can be used to diagnose the condition, endometrial lesions (scar tissue) are often invisible to scans. The only way to confirm the presence of endometriosis is through a minimally invasive surgery called a laparoscopy.
Endometriosis is easy to confuse with other uterine conditions like adenomyosis and uterine fibroids. All three conditions present similar symptoms, and it’s not unlikely to develop more than one. While we don’t know the cause, we do know that endometriosis is an estrogen-dependent condition, meaning that the development and progression of the disease are in direct relationship to estrogen levels in the body. We also know that endometrial cells cause an inflammatory response and that we can manipulate our diet and lifestyle to alleviate our symptoms.
But the Western healthcare system prioritizes surgery and hormonal treatment over diet and lifestyle changes, and this leaves those diagnosed with endo with few options. There are too many blind spots in our understanding of the condition that keep physicians from properly caring for their patients. Unanswered questions of causation and treatment have been the catalyst for organizations like EndoFound, SpeakEndo, EndoBlack, and The Endometriosis Association who work to advocate for more funding and research. Online publications like Endometriosis News provide a space for womxn to publish their own personal case studies. In August 2020, Congresswoman Abby Finkenauer, who suffers endometriosis, passed a bill to double the funding for research. This took the budget from $13 million to $26 million annually.
The conversation that these organizations have facilitated are invaluable. They serve to educate, destigmatize, and challenge the system’s blind spots. They provide an archive of case studies for womxn who have received a diagnosis to pore over. They point out racial discrepancies. They offer a place for those fighting for a diagnosis to find community.
What Is Endometriosis?
Endometriosis is a uterine condition where tissue that is very similar to the tissue that lines the uterus (endometrium) abnormally grows outside of the uterus. It most commonly grows on organs in the pelvic cavity like the uterus, ovaries, or fallopian tubes, but can also grow on other organs in the body. Like the endometrium, this abnormal tissue responds to the menstrual cycle by thickening and breaking down. But unlike the endometrium, it becomes trapped, inflamed, and scars, leaving painful lesions. These lesions can form scar tissue (adhesions) which, while a normal part of the healing process, bind organs and tissue together, causing even more pain and inflammation.
Endometriosis is considered a chronic inflammatory disease. The lesions that form contain inflammatory cells. These cells recruit parts of the immune system to direct blood supply, allowing lesions to grow faster. This process also encourages the growth of more lesions, which in turn causes more inflammation, more pain, and more cell reproduction. The lesions will eventually burrow into the organs rather than existing on the surface, a condition called deep infiltrating endometriosis.
Endometriosis is also an estrogen-dependent disease. Estrogen is the primary female sex hormone and is responsible for the development and regulation of the reproductive system in people with ovaries, uteri, and breasts. Estrogen is produced by the ovaries, adrenal glands, and fat tissues and can be introduced to the body by external factors. Not only does the development of endometriosis depend on the presence of estrogen in the body, but the endometrial lesions actually produce their own estrogen. So as more lesions develop, more estrogen is produced at the same time as inflammation spikes. The vicious cycle continues as this process encourages the growth of more lesions.
Severe menstrual pain is the most common symptom, though there are many. Symptoms can vary depending on the location of the lesions and they can progress over time as more lesions develop. There are 2 different methods of classifying endometriosis. The first is the 4 stages of endometriosis. The stages don’t necessarily correlate to the severity of the symptoms, rather, they refer to the scope of lesions in number in size.
Blausen.com staff (2014). "Medical gallery of Blausen Medical 2014"
The 4 Stages of Endometriosis
Stage 1: There is a minimal amount of endometrial implants. They’re generally located in the pelvic/abdominal area. There’s little to no scar tissue.
Stage 2: There is a mild amount of implants that are slightly deeper, and there is some scar tissue.
Stage 3: There are several, deep implants. Small cysts may be found on the ovaries. Scar tissue has formed into dense adhesions.
Stage 4: Endometrial cells are widespread and have deeply invaded the organs. There are large cysts on one or both ovaries. There are many dense adhesions binding the organs together.
The Endometriosis Foundation of America created a second classification system in order to categorize the disease not just by the progression of lesions and adhesions, but also by the severity of pain and location of the lesions.
Category 1: Peritoneal Endometriosis. Endometriosis has invaded the membrane that lines the abdomen.
Category 2: Ovarian Endometriomas (Chocolate Cysts). Lesions are found on the ovaries. Cysts that have the potential to break and distribute endometrial cells to other areas of the pelvic cavity have formed.
Category 3: Deep Infiltrating Endometriosis I. Lesions have deeply invaded the pelvic organs. There may be extensive scar tissue that has bound the organs together so that they become stuck in place, a condition called “frozen pelvis”.
Category 4: Deep Infiltrating Endometriosis II. The most severe form of endometriosis. Cells have invaded organs both within and without the pelvic cavity. Vulnerable organs include the bowels, appendix, diaphragm, heart, lungs, and rarely, the brain.
Endometriosis Is Not Just Really Bad Period Pain
Really bad period pain is an indicator that endometriosis or other uterine conditions may be present, and should be taken seriously by your physician. As the disease progresses, more lesions and scar tissue form. In the later stages of the disease, pain may continue throughout the entire menstrual cycle, rather than during menstruation only. This continuous pain is thought to be a result of adhesions or deep infiltrating endometriosis interacting directly with the nerves. Pain from endometriosis has been characterized by stabbing, pulling, sickening, nauseating, burning, and miserable.
Other symptoms depend on the progression and location of the condition. They include:
- Pain during sex
- Diarrhea or constipation
- Heavy periods
- Bloating and other digestive issues
- Severe menstrual cramps that may get worse over time
- Pain while urinating
- Lower back pain
- General pelvic pain
A History of How We’ve Come To Understand Endometriosis
Recordings of painful uterine disorders date back to the 17th Century, but it was John Sampson who posited the first theory about endometriosis. In 1927 he became interested in ovarian and uterine cysts and deduced that they were a product of hormonal development of young, menstruating people. He noticed the similarity between the endometrial tissue and the uterine lining and developed the theory of retrograde menstruation. This theory states that during menstruation, some of the menstrual blood escapes through the fallopian tubes and implants on the outside of the uterus. There it becomes trapped and inflamed. For several decades, this was the most widely accepted theory on what causes endometriosis. But today the theory has been refuted, citing several reasons: retrograde menstruation is extremely common, occurring in 75%-90% womxn whether or not endometriosis is present; the endometrial tissue and the uterine lining, while similar, have different physiology and are not the same; endometriosis occurs in adolescents, newborns, and people without uteri.
But researchers haven’t come to an agreement on what causes endometriosis. Many theories seem to explain some instances of the condition, but not all. Most thought leaders today believe that there is likely more than one cause.
Other Theories of Endometriosis
Genetics. Evidence shows that womxn with relatives with endometriosis are more likely to develop the condition.
Immune Disorders. Some researchers believe that the inflammatory response in endometriosis is a sign of autoimmune disease. Others believe that the inflammatory response causes other autoimmune diseases to develop.
Stem Cell Theory. Stem cells are cells that can develop into other cell types. This theory suggests that the cells that are responsible for regenerating the uterine lining after it sheds during menstruation spread and develop into endometriosis.
Mulleriosis and Embryonic Origin Theory. This theory states that endometriosis is a result of a developmental defect that happens during embryonic development.
Uterine Peristalsis. This refers to the uterine movement of the non-pregnant uterus. Dysfunctions in this process could be related to endometriosis.
Circulatory and Lymphatic System. Endometrial cells traveling through the lymphatic and circulatory system could explain why they’re found on organs outside of the pelvic cavity.
Oxidative Stress. Some research has found that iron levels, oxidative stress markers, and genes involved in oxidative stress show a correlation to endometriosis.
Apoptosis. Endometrial cells are able to avoid apoptosis, a process that eliminates cells that pose a threat.
Why Haven’t We Decoded Endometriosis?
Endometriosis is such a common condition, but there’s still so much to be known about why it happens and how to respond. Many believe that funding for womxn’s issues is simply not a priority for the administration. Attempts to defund Planned Parenthood and the gutting for Title IX seem to indicate that this is true. Before the new bill in August that doubled funding for research, endometriosis was one of the least funded conditions in the country. Alzheimers, which affects roughly the same amount of people in the US, receives over $300 more per patient in funding. Diabetes affects fewer people but receives more funding. Breast cancer receives 27 times the amount that endometriosis does, and prostate cancer receives 10 times more.
The healthcare system notoriously disregards womxn’s reports of pain, especially womxn of color. This poses a huge problem for a condition whose most common symptom is pain. It was once believed that endometriosis occurred only in white womxn, but this is indicative of the racial bias that made diagnosing or treating BIPOC impossible. While it’s easy to feel like strides have been made in the racial public health crisis, disparities in treatment still remain today. Studies show that even today, the perception that black people feel less pain than white people influences how BIPOC are treated in the healthcare system. Other studies have shown that black and Hispanic womxn are significantly less likely to receive an endometriosis diagnosis than white womxn.
But in recent years, some significant steps have been taken to classify endometriosis as a legitimate issue that needs our attention. In 2011, the first worldwide study was done to measure the societal impact of endometriosis. The study found that not only did womxn experience a delay of 7 years before a diagnosis was made, they also lost an average of 11 hours of productivity per week because of their symptoms. That’s almost an entire month out of the year. In 2019, the NY governor signed a new bill that requires schools and hospitals to provide educational materials about endometriosis to adolescents. The goal of the bill is to begin closing the gap between the onset of symptoms and diagnosis, by letting people who menstruate know, at a young age, that menstrual pain can mean something. And this August, the funding for endometriosis research doubled in the US.
The Role of Diet In Endometriosis
While more research is needed, evidence--both scientific and anecdotal--all points to diet as an important factor in treating, managing, and preventing endometriosis. The classic nutritional approach to endometriosis, The Endo Diet, focuses on cutting out inflammatory and estrogen producing food and incorporating anti-inflammatory, estrogen-regulating foods like fiber and omega 3 oils. Other foods to avoid according to The Endo Diet are red meat, dairy, gluten, caffeine, sugar, eggs, alcohol, and soy. Foods to focus on eating are chia seeds, walnuts, leafy greens, oil-rich fish, fruits and vegetables, whole grains, beans, peas, and oats. The diet also stresses the importance of avoiding exposure to chemical-based estrogen found in toiletries and cosmetics.
Many endo-friendly diets recommend cutting out dairy products because they often contain growth hormones and antibiotics. This is especially significant if endometriosis has developed on the bowel, as dairy can pose digestive problems and pain when the body breaks down lactose. Many people have found success with this approach; others haven’t. But a study in 2013 showed that a higher intake of dairy foods correlated with a lower risk for developing endometriosis. This study attributed higher levels of Vitamin D to the decrease in risk. In 2019, another study showed that consumption of dairy during adolescence, especially yogurt and ice cream, was associated with a lower risk for developing the condition. This was the first study to look at the relationship between diet during adolescence and the development of endometriosis.
Some have speculated that this finding tells of a relationship between the gut microbiome and endometriosis. This would validate a 2016 study which concluded that the gut microbiota plays a crucial role in inflammation as well as the metabolization of estrogen, and therefore the development of endometriosis. It’s important to keep in mind that these studies all focused on the risk of developing the condition, and not the alleviation of symptoms of treatment of the condition.
So what about womxn who already have endometriosis? What research can help us understand the role of diet once the condition has developed? In February of 2020, a study followed 12 people with endometriosis and measured their symptoms as they adopted individually tailored diets and lifestyle changes. Participants all experienced a decrease in symptoms and an increase in well-being after following the individually tailored changes. Increased energy levels were reported, as well as a “deeper understanding of how they could affect their health by listening to their body’s reactions”. Though the diets and lifestyle changes weren’t uniform, participants found that if they experimented with removing and adding things to their diet and listened to how their body responded, they were able to decrease their symptoms. When they deviated from their bodies’ response signals, symptoms increased.
Diet changes generally involved foods that affected estrogen and inflammation levels like gluten, dairy products, and carbohydrates. Fruits, vegetables, and fish were added. This study tells us that trial and error, a process that womxn with endo are no strangers to, can help us to manage our pain even when we don’t have all the answers.
Similarly, there are many herbs that may be able to help with endometriosis pain, and little research to help us understand why. There have been a few studies that look at the relationship between dietary supplements and endometrial lesions that show some promise, but many of these studies are done on mouse subjects. Research with human subjects is small or largely inconclusive. However, a need for research shouldn’t keep anyone from trying things for themselves.
Herbs that May Provide Relief From Endometriosis Pain
- Vitamin D3
- Green Tea
In addition to diet, other natural approaches to endometriosis pain include acupuncture, pelvic floor therapy, and aerobic exercise. Some studies have shown that acupuncture can be used for pain reduction, improved quality of life, increased social activity, and increased school attendance. Because endometriosis is associated with pelvic floor dysfunction, some people find that pelvic floor therapy helps with bloating, pain during sex, and general strength. The first study published on exercise and endometriosis in 1986 concluded that womxn who exercised regularly and didn’t smoke were at a lower risk for developing endometriosis.
A Word On Using Your Diagnosis To Help Others
The assumption that menstruation is painful and womxn should just deal with it runs rampant in our culture. It’s a misguided belief that keeps womxn from getting a proper diagnosis today, and it subtly guides how we allocate funds and prioritize health issues. Nods to this norm are woven through our history of how we understand ourselves, all the way back to the Garden of Eden when Eve received the punishment of painful childbirth.
If you’ve received a diagnosis, get support from family and friends as you start to figure out how to manage your health. Let them know what you’re doing so that any shifts in your social life are easier. If you’re trying to get a diagnosis, track your symptoms with Flutter, an app designed for people with endometriosis. If you’re in Australia or New Zealand, use QUENDO. You’ll learn more about your condition and be able to speak confidently with your doctors. And find stories of other people navigating endometriosis. Try the things they’ve tried. Let their courage make you brave enough to speak openly about your condition.
Document your journey because it might help others.