the chronicWhat Is Endometriosis?
Endometriosis is a condition in which endometrial-like tissue that is located outside of the uterus contributes to an inflammatory process that can lead to severe pain, adhesions, organ dysfunction, and many more complications. The endometriosis tissue is different than the endometrium which lines the uterus and is shed during a period. This is an important distinction since the tissues behave differently and aren’t structurally the same.
Endometriosis is characterized by the presence of endometrial-like tissue located outside the womb. These fragments are different structurally and behave differently from the normal endometrium which is shed during a period.
Many doctors and resources improperly define the two types of tissue as being identical. This is not only inaccurate but also problematic when trying to understand the disease mechanisms involved and to develop appropriate treatments. Hundreds of differences have been found between the two, in terms of their genetics, hormone receptors, and appearance.
It was once thought that endometriosis was exactly identical to the endometrium, but now we know that there are hundreds of basic and profound differences between endometriosis and endometrium. These differences include genetic differences between the two types of tissue as well as differences in enzymatic activity, hormone receptors, hormone responsiveness, microscopic appearance, and visual appearance.
Where Is It Located?
Endometriosis lesions are commonly found in the pelvic cavity and on the pelvic structures, including the bladder, bowel, ovaries, intestines, and Pouch of Douglas. Endometriosis has been found on every internal structure except for the spleen. When endometriosis is located outside of the reproductive organs it's classified as extra-pelvic. While endometriosis has been found in all 11 systems of the body, the majority of extra-pelvic endometriosis is found in the digestive, urinary, respiratory, and skin systems. Examples of these locations include the skin, eyes, spine, lungs, surgical scars, and brain.
Endometriosis has been found in all 11 systems of the body. The majority of extra-pelvic disease is found in these four systems: Digestive, Urinary, Respiratory, and Skin.
The endometriosis contains endometrial glands and stroma that irritate the surrounding tissue with their secretions. The secretions themselves have not been identified, but are likely irritating to nerves in the peritoneal lining and nearby capillaries which could cause bleeding and pain. This irritation leads to the immune system releasing inflammatory proteins to target the disease. The process causes inflammation, swelling, and can eventually result in scar tissue and adhesions, which bind organs and tissue together. Endometriosis is evident in the growth of lesions, nodules, and cysts.
Endometriosis is composed of glandular tissue surrounded by tissue called stroma. All glandular tissues secrete substances. This substance leaks out into surrounding tissue and can be very irritating. These secretions can destabilize adjacent capillaries, causing them to bleed, which may be part of the pain patients with endometriosis experience. Of course, many endo lesions are not associated with any bleeding at all, so the secretions themselves must have the ability to irritate tiny nerves in the peritoneal lining and the surrounding tissues.
Endometriosis is an estrogen dependent disease. It is characterized by estrogen dependent growth and increased local estrogen production. Estrogen increases the growth, inflammation, and symptoms of endometriosis. Estrogen receptors levels in endometriosis are over 100 times greater than those in endometrial tissue. Studies have shown that local estrogen production stimulates the growth of lesions since they contain both estrogen receptors and aromatase. Aromatase is an enzyme responsible for a key step of converting androgens to estrogens. Estrogen is the dominant hormone in a majority of endometriosis patients with hormonal imbalance.
While a complete understanding of the disease mechanism remains elusive, endometriosis has been observed to alter and affect a wide range of molecular functions. Alterations to immune and endocrine function, as well as an increase in adhesion molecules have been discovered. Interestingly, research has also revealed a widespread metabolic phenotype known as the Warburg effect that has been described in many cancers.
Due to the complexity and insidious nature of the disease, we must learn a great deal more before we understand the process of endometriosis. What we know for certain is that endometriosis patients often experience chronic, severe, and debilitating pain and symptoms. This significantly deteriorates their quality of life and ability to work which has wide-reaching negative social, mental, socioeconomic, legal, and political implications.
Endometriosis represents a significant clinical challenge commonly associated with reduced quality of life in those affected. Symptoms are frequently wide-ranging and often start early in life, but may be underappreciated by medical and lay communities alike.
Symptoms include pain with menstruation and pain in the pelvis, abdomen, lower back, legs, bladder, bowel, and throughout the body. Patients can also experience bladder and bowel dysfunction, pain with sex, bloating, fatigue, and infertility. Some patients have several comorbidities including migraines, fibromyalgia, allergies, hypothyroidism, asthma, and chronic diseases. A more detailed look at symptoms can be found in Symptoms of Endometriosis.
The impact of endometriosis-associated symptoms upon quality of life is multidimensional and more complex than just negatively affecting psychosocial parameters.- The Impact of Endometriosis Upon Quality of Life: A Qualitative Analysis
How Are Patients Affected?
Currently it's estimated that over 176 million people worldwide are afflicted. While endometriosis predominately affects cis females, it can also affect trans men, non-binary individuals, non-menstruators (such as premenarche, post hysterectomy, post menopause), and even cis men. Even with an early onset of symptoms, a majority of patients will go without proper care and a diagnosis for an average of 10 years. Many more will be subjected to repeated dismissals of symptoms, unnecessary surgeries, and medical abuse and neglect.
Incorrectly labeled as hysteria, women's health has been marginalized since the beginning of medicine. Gender bias in medicine has historically hindered diagnoses, research, and funding and continues to do so. Since endometriosis largely affects cis females, the stigma surrounding menstruation and female pain has damned it to be dismissed by society. Patient education and empowerment has led to more awareness surrounding menstrual health and gender bias in medicine.
Inclusion in endometriosis care is even more stark. Gendered language surrounds the discussion of endometriosis. Anyone with a uterus, regardless of identity, can have the disease. This includes individuals who menstruate and those who do not. Incorrectly, trans men and non-binary individuals are excluded from a majority of medical texts, research, and awareness. This leads to an even longer delay in diagnosis or a complete exclusion from appropriate care. The resulting isolation, stress, and burden are profound.
It is also imperative to look beyond gendered health and include all persons, many of whom who are often struggling to access endometriosis diagnosis, treatment and supportive, quality care in a traditionally female-identified space. The oft-overlooked, unique considerations in healthcare settings that fail to be inclusive can lead to additional stressors, further isolation and impaired treatments. Without a doubt: endometriosis has a significant social and psychological impact on the diverse population affected, across several domains of their lives. The time for the disease to receive recognition as a major public health issue is long past due.
Racial bias in medicine is a rampant problem that costs People of Color proper diagnosis, access to treatments, inclusion in studies, and much more. People of Color and Black Women with endometriosis have more challenges getting a diagnosis and accessing costly surgeries and treatments. Black women are only about half as likely to be diagnosed with endometriosis compared to white women. According to a systematic review and meta-analysis, the prevalence of endometriosis appears to be influenced by race/ethnicity.
While the disease mechanism remains largely a mystery, we must use the information that we know to spread awareness, fund research, and promote understanding in the medical and patient communities. Raising awareness for endometriosis means challenging racial and gendered medical bias. It means demanding a better quality of care, respect, and an equal voice. It requires a more meaningful dialogue and accountability from society and the medical community. Though the amount of people affected by endometriosis is staggering, the amount of unrelenting misinformation and medical dogma responsible for their neglect is equally unnerving.
Raising awareness for endometriosis means challenging racial and gendered medical bias. It means demanding a better quality of care, respect, and an equal voice. It requires a more meaningful dialogue and accountability from society and the medical community. Though the amount of people affected by endometriosis is staggering, the amount of unrelenting misinformation and medical dogma responsible for their neglect is equally unnerving.
Resources
The following are trusted informational resources that explain endometriosis, discuss possible causes, compare diagnostic methods, and critically examine the treatment options that are available for endometriosis. These organizations, studies, and websites are dedicated to raising disease awareness, furthering research, empowering patients, and promoting self advocacy. Exploring multiple platforms for information will help expand your understanding of this complex condition.
- Endometriosis from A to Z is an informational guide on endometriosis that was written by a variety of doctors and healthcare providers. The authors hope that endometriosis patients will educate themselves on endometriosis and the treatment modalities to make informed decisions in their care. This is a must read.
- Endopaedia is a highly accurate, important, and informative resource that was founded by Dr. David B. Redwine, M.D., a leading endometriosis excision specialist and researcher. This is an excellent starting point for your endometriosis research.
- Center for Endometriosis Care is an excision clinic that's dedicated to raising awareness and furthering research. They are a trustworthy and respected source for learning everything about endometriosis. Their content library provides additional resources and links.
- The Endometriosis Association is a self-help organization of people with endometriosis, doctors, scientists, and others interested in exchanging information about the disease.
- Endometriosis Foundation of America is a non-profit that strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.
- Endometriosis Research Center was among the first endometriosis organizations to be formed in the United States. They address the ongoing need for international endometriosis awareness, advocacy, support, education, legislative efforts and research facilitation.
- The Endometriosis Association of Ireland was formed in 1987 to provide information and support for people with endometriosis.
- Endometriosis Australia endeavors to increase recognition of endometriosis, provide endometriosis education programs, and help fund endometriosis research.
- The World Endometriosis Society (WES) advances evidence-based standards and innovations for education, advocacy, clinical care, and research in endometriosis, adenomyosis, and related disorders, to improve the lives of affected people and their families.
- Endometriosis News is a science and health publishing website for endometriosis. They feature the latest news on endometriosis.
- Endo What? is a film created by endometriosis patient Shannon Cohn to educate and bring more widespread awareness to the disease. It's available for public screening.
- Endographics creates access to easily shareable educational infographics designed to spread awareness about endometriosis. They are easy to share, eye catching, and provide accurate information:
For the next article in the Endometriosis Series, see Symptoms of Endometriosis