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Endometriosis Awareness Month: Understanding the Invisible Illness that Affects Millions of Women Each Year

March is Endometriosis Awareness Month. In order to bring awareness to this invisible illness, the Pain Resource team is discussing everything you need to know from causation, to symptoms, to resources.

What is Endometriosis?

Endometriosis is a painful condition that occurs when endometrial-like tissue (the tissue that grows inside of the uterus) grows outside of the uterus. It’s estimated that nearly 200 million women worldwide (about 10% of women in the United States) between the ages of 15-50 suffer from endometriosis, and is most commonly diagnosed in women between 40-50, according to the Endometriosis Foundation of America. Endometriosis usually affects the ovaries, fallopian tubes, and the areas surrounding the pelvis, but can sometimes spread to other parts of the body in more severe cases.

In cases of endometriosis, the endometrial tissue that grows outside of the uterus will act just as it would inside; it becomes thicker, deteriorates, and bleeds with each menstrual cycle. As the tissue outside of the uterus breaks down it becomes trapped inside the body, which can cause several health issues and painful conditions. When this takes place in the ovaries, one of the most common places in which endometriosis occurs, it can form ovarian cysts known as endometriomas. Tissue outside of the uterus can form deep lesions, which over time can form painful scar tissue and adhesions (where the organs of the pelvis become bound together).

What is EndometriosisEndometriosis is a very serious, painful condition that accounts for nearly a third of all cases of chronic pelvic pain, and nearly 17% of cases involving infertility, according to Fertility and Sterility. Despite such a high prevalence among women of reproductive age, there are still major delays in diagnosis for thousands of women suffering from endometriosis each year. These delays in diagnosis can not only increase the likelihood of more serious cases of endometriosis and decreased quality of life, but also increase healthcare costs and hospital visits.

Understanding the risk factors, symptoms, and signs of endometriosis can be a helpful tool in communicating with healthcare professionals when discussing possible cases of endometriosis. Endometriosis symptoms can often overlap with other common gynecologic and gastrointestinal diseases, such as adenomyosis, fibroids, and ovarian cysts, making a proper diagnosis difficult.

Below is a comprehensive list of common causes, risk factors, and symptoms of endometriosis. It is important to note that this list is meant to serve only as a guide to understanding this chronic condition. Contact a healthcare professional or OBGYN for more information on endometriosis or if symptoms arise.

What Causes Endometriosis?

Endometriosis occurs when the tissue formed outside of the uterus breaks down and bleeds with each menstrual cycle. In a normal cycle, the blood flows from the uterus, through a small opening in the cervix, and out through the vagina.

While there is no known cause for endometriosis, there are a few leading explanations that may explain why this occurs, however, none have been proven to be definitive.

Retrograde Menstruation

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The most common cause attributed to endometriosis is retrograde menstruation; a process in which the menstrual blood flows back through the fallopian tubes and into the pelvic cavity. Retrograde menstruation is fairly common among women of reproductive age and is believed to occur in almost all women to some degree.

Retrograde menstruation is often discussed and researched in the context of endometriosis and is rarely diagnosed as a singular condition. This is mainly because women with retrograde menstruation often do not have any symptoms, or their symptoms are very non-specific symptoms, often presenting as a painful period.

There is very little research surrounding the cause of retrograde menstruation, however, one study published by Obstetrics & Gynecology found that 90% of the women involved with the study experienced some level of blood in the peritoneal fluid (a fluid found in the abdominal cavity that lines the abdominal wall and pelvic cavity). In short, blood in this fluid would indicate some level of retrograde menstruation.

The study also found that only 15% of women with occluded or blocked, fallopian tubes had blood in the abdomen, meaning there may be a connection between blocked tubes and the prevention of retrograde menstruation. It is important to note that this is one study, which was conducted years ago, and has not been proven to be definitive. However, what can be drawn from this is that retrograde menstruation is very common among menstruating women and that further research must be done to uncover the cause and link to endometriosis.

While retrograde menstruation happens to most women, it is not definitive causation, as most women who experience retrograde menstruation do not develop endometriosis. More information is needed to understand retrograde menstruation’s role in endometriosis.

Immune System Disorder

The immune system is a complex network of special organs, cells, and chemicals that fight infection. In addition to its job of fighting viruses and infections, the immune system is also in charge of eliminating foreign or irregular cells from the body. One of the clearest examples of this is transplants. A person who receives an organ transplant will need to take immunosuppressants for life, as their immune system will recognize the new organ as a foreign body and attack it.

While, again not a definitive theory, many speculate that endometriosis could be the result of an immune system disorder. In the case of endometriosis, the immune system fails to fight off the foreign endometrial tissue outside of the uterus, which could indicate some type of immune disease may be to blame.

There are a few indications that endometriosis itself may be an immune disease, or that another immune disorder may be the cause. Some lesions caused by endometriosis can ‘evade’ the immune system, much like certain types of cancer, by cheating the cells that would typically attack them.

A 2016 study conducted by scientists at Queen’s University studied the link between infertility caused by endometriosis and abnormal immune responses, mainly the immune system’s response to inflammation caused by endometrial lesions. The study found that the abdominal inflammation caused by endometrial lesions can lead to hormonal imbalances, oxidative stress, and other internal stresses that can dramatically affect the health of an egg, sperm, or embryo. This study is not conclusive, and states that “there is a pressing need at this time in endometriosis research.”

Another study published by Human Reproduction Update found that there is a strong correlation between endometriosis and certain autoimmune disorders. The study found that women with endometriosis were more likely to be diagnosed with an immune disorder; with lupus, Sjögren’s syndrome, rheumatoid arthritis, celiac disease, multiple sclerosis, and inflammatory bowel disease among the most commonly observed.

The prevalence of a seemingly higher chance for immune disorders may be an indication that a weakened immune system has a role in the development of endometriosis. Of the 26 studies observed, only 4 supported a statistically significant association between endometriosis and at least 1 autoimmune disease previously listed. More research is needed on the connection between the two; however, the indication that the two may be linked is reason enough to be aware of the potential comorbidity of endometriosis and immune disorders.

Embryonic Cell Transformation

Another probable cause for the development of endometriosis is the transformation of embryonic cells, also known as coelomic metaplasia. This is the process by which hormones are thought to transform the cells outside of the uterus into cells like the endometrial cells lining the inside of the uterus. In short, this means that certain areas of the abdominal cavity are ‘converted’ into endometrial tissue. This theory is grounded in the fact that abdominal tissue is formed by the same cells that form endometrial tissue, which could explain how the cells transform.

Hormones such as estrogen are thought to transform embryonic cells into endometrial tissue in the prepubescent phase of growth, typically around the ages of 10-13 years of age. While coelomic metaplasia may explain the transformation of abdominal tissue to endometrial tissue in young girls, the driving force behind endometrial growth is estrogen, which is not present in prepubescent girls, meaning that this may not be the cause for endometriosis in women of reproductive age.

While coelomic metaplasia is a difficult theory to prove, it may help explain rare cases of endometriosis in prepubescent girls and women with conditions such as Müllerian agenesis, a condition in which the Müllerian duct fails to develop, resulting in a missing uterus and variable degrees of vaginal hypoplasia of its upper portion.

Surgical Scar Complications

Endometriosis Surgical ScarEndometriosis is also thought to be caused by surgical incisions, most commonly observed after procedures such as a hysterectomy or cesarean section (C-section). After a surgery, endometrial tissue may attach itself to the surgical incision, causing the tissue to begin growing outside of the uterus, a condition known as scar endometriosis.

Endometriosis caused by operative scars is rare, fewer than 1% of patients reportedly have scar-related endometriosis according to a study conducted by the Canadian Society of Plastic Surgeons. In the study, researchers reported that scar endometriosis is extremely challenging to diagnose, as “cyclical changes in the intensity of pain and size of the endometrial implants during menstruation are usually characteristic of classical endometriosis.” Researchers also noted that only 20% of the women studied displayed these symptoms, and instead only showed symptoms of tenderness to palpation and raised painful scars.

Conditions such as cesarean scar endometriosis (CSE) have also been observed, again in very small numbers, in women post-C-section. The Indian Journal of Surgery found that CSE treatment by surgery was an effective way of combating this form of endometriosis. In the study, 12 women with CSE underwent surgery to remove the endometriotic lesions caused by surgical implants. All 12 women reportedly had no recurrence in CSE.

Other Possible Causes of Endometriosis

  • Endometrial cell transport: The blood vessels or lymphatic systems in the body may transport endometrial cells to other parts of the body.
  • Peritoneal cell transformation: Also referred to as ‘induction theory’ this is the process by which the peritoneal (abdominal) membrane is thought to transform into endometrial cells due to changes in hormonal changes or immune factors.

Potential Risk Factors

While endometriosis can occur in any woman, certain risk factors may put someone at a higher risk of developing endometriosis. While none of these factors alone serve as a definitive proof for the presence of endometriosis, they can help point a diagnosis, or negative diagnosis, in the proper direction.

As with causations of endometriosis, factors that can put someone at risk are also not well known. It is important to note that having one of or these factors does not guarantee the development of endometriosis.

Factors That May Increase the Risk of Endometriosis

  • Having a family member such as a mother, sister, aunt, etc. with endometriosis
  • Starting menstrual cycles at an early age (typically before age 11)
  • Having short menstrual cycles lasting less than 27 days
  • Heavy, abnormal menstrual cycles that longer than 27 days
  • Never giving birth
  • History of infertility
  • Reproductive tract abnormalities

Symptoms of Endometriosis

Symptoms of endometriosis can be difficult to discern from other common gynecologic and gastrointestinal diseases, which can make obtaining a proper diagnosis challenging. Some of the most common symptoms of endometriosis often present similarly to a painful menstrual cycle, which can make it difficult for women to receive proper referrals and treatments.

While many women experience painful menstrual cycles, women with endometriosis often describe the pain as far worse than a normal cycle, often accompanied by chronic pelvic pain. The level and severity of one’s menstrual pain should not serve as an indication of endometriosis. Mild endometriosis can result in severe pain, while more serious cases can result in little to no pain at all. Regular gynecological exams are recommended for all women of reproductive age.

Symptoms of Endometriosis

As with any condition, an early diagnosis can result in better management of pain and endometriosis-related symptoms. It is always important to consult with a general practitioner (GP) when symptoms arise and to obtain a referral to an OBGYN if symptoms worsen or persist after an initial examination by the GP.

Common Symptoms of Endometriosis

  • Painful periods
  • Painful bowel motions or trouble when passing urine
  • Lower abdominal pain between periods
  • Fatigue
  • Pain with intercourse
  • Excessive bleeding during menstrual cycles

Always consult with a GP when any abnormal symptoms arise. While the above-listed symptoms may not be a definitive sign of endometriosis, they could be a sign of other medical issues.

What Are Current Treatments for Endometriosis?

Endometriosis is a painful, chronic condition that can cause a multitude of health problems, many of which can cause a lifetime of pain and discomfort. While there are currently no curative treatments for endometriosis, there are many treatments that can help to alleviate symptoms and manage any potential complications.

Pain Medications

Over-the-counter pain medications such as ibuprofen and naproxen sodium (Aleve) can be effective in more mild cases of endometriosis, as they can help reduce pain related to the inflammation caused by lesions and cramping during the menstrual cycle. These medications are often used in tandem with hormone therapy in women who are not actively trying to conceive.

Hormone Therapy

Hormone therapy is sometimes prescribed in the treatment of endometriosis, as it can be an effective way to reduce endometrial tissue growth during the menstrual cycle. With each cycle, the endometrial tissue thickens, breaks down, and bleeds. Using hormone therapy can slow the growth of the tissue, possibly preventing the formation of new implants of endometrial tissue. This type of therapy is not curative and can result in a return of symptoms after stopping treatment.

Surgery

Surgery to remove endometrial implants is a viable option in women who are trying to become pregnant, or in more severe cases of endometriosis where pain persists and becomes serious. Surgery is performed on women wanting to become pregnant who have implants in or around the uterus or ovaries, called conservative surgery, as it preserves the organs and leaves them intact. This is not a curative solution for infertility, although it can prove successful in some cases.

Surgery can typically be performed laparoscopically, often referred to as keyhole surgery, and is a minimally invasive procedure. Laparoscopy is the most common procedure in diagnosing endometriosis. During this type of procedure, surgeons insert a small viewing device (laparoscope) through a tiny incision near the navel and use instruments to remove endometrial tissue through another small incision. This procedure leaves minimal scarring and is usually done in an outpatient facility.

Challenges and Delays in Diagnosing Endometriosis

Diagnosing EndometriosisThere is still a lot of work to be done in the research, development, and diagnosis process in regards to endometriosis. Currently, studies have shown that some women wait for an average of seven years from the onset of symptoms to diagnosis of endometriosis. This delay in diagnosis can bring about years of needless suffering, medical bills, and health issues that could be prevented if proper attention and response to endometriosis-like symptoms were given.

Dr. James Duffy, a Clinical Fellow at King’s Fertility, The Fetal Medicine Research Institute in London, states that “many of the people I see in my clinic have waited a long time to be referred to a gynecologist and have felt they had not been listened to during many parts of their journey. This needs to change.” He then adds that “developing an accurate blood test, which could hopefully be requested by GPs, could help tackle these delays.”

Delays in diagnosing endometriosis can affect not only the delay in treatment and relief from pain but also increases in healthcare costs. A study published in January of 2020 by Advances in Therapy, found that “patients with intermediate or long diagnostic delays had consistently more all-cause and endometriosis-related emergency visits and inpatient hospitalizations in the pre-diagnosis period than patients with short delays.”

The study found that pre-diagnosis health care costs for women with endometriosis averaged $21,489, $30,030, and $34,460 for cases of short-term, medium-term, and long-term delays respectively. These costs were significantly higher than women with no delay in diagnosis; in the case of women with long-term delays, costs averaged almost 60% higher.

While there is still much understanding needed on endometriosis, there are steps that can be taken to help women who are currently suffering from this condition. Expediting the referral process from GP to OBGYN can be a major first step in giving women suffering from endometriosis sufficient and accurate healthcare. Greater awareness and understanding surrounding endometriosis should be greatly encouraged. Not curative doesn’t mean non-treatable, and with further research and understanding of this invisible illness, more women can be properly and more efficiently diagnosed and treated.

TLDR; Everything You Need to Know About Endometriosis in 60 Seconds

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Zachary Pottle
Zachary Pottle is a born-and-raised Mainer, who holds a BA in English with a specialization in professional writing from Saint Leo University in sunny Florida. He currently works as a journalist for Pain Resource, where he writes about breaking news in the medical industry. When not writing, he enjoys spending his time watering his plants and drinking a cup of earl grey.

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