All too commonly, endometriosis is improperly labeled as bad menstrual cramps. While intense cramping and pain with menses are often associated, endometriosis can cause many significant symptoms and is a far reaching, systemic disease. Each patient is unique and may experience any range of these symptoms or even ones that are not listed.

• Pain with Menstruation
• Pain with Ovulation
• Pelvic Pain
• Abdominal Pain
• Low Back Pain
• Leg Pain
• Chest and Shoulder Pain
• Cyclical Pain
• Pain in Bowel and with Voiding
• Pain in Bladder and with Voiding
• Bladder and Bowel Dysfunction
• Pain with Sex, Dyspareunia
• Pain with Vaginal Penetration
• Bloating
• Nausea and Vomiting
• Fatigue
• Infertility
• Heavy Bleeding with Menstruation
• Possible Comorbidities: Migraines, Fibromyalgia, Allergies, Asthma, Hypothyroidism, and Chronic Diseases

Though incorrect, endometriosis is commonly thought to be cyclical in nature and only associated with menses. This couldn’t be further from the truth for many patients. While some patients will experience symptoms cyclical to their menstrual cycle, many more will experience a gradual worsening of symptoms that can become chronic in nature.

A common myth is that endometriosis only affects a patient during their period. While this may be the case for some patients, for most patients the pain affects them both during and outside their period.

- Vital Health Endometriosis Center

For example, some patients will only have pain and dysfunction surrounding their ovulation and menstruation. More commonly, a patient will experience daily symptoms that intensify and become further debilitating over time. On the other hand, there are patients who remain completely asymptomatic despite having the disease. There is a poor correlation between the stage of the disease and the severity of the symptoms. Disease stage is based on appearance of the disease and not the presentation of symptoms or pain. Due to the varying presentations and symptoms, no two patients present with the same symptoms or comorbidities.

Endometriosis has various mechanisms that can create pain. This includes inflammatory pain from the inflamed internal environment, pain from compression or infiltration of nerves by lesions, adhesions, fibrous tissue, organ compression, and neuropathic pain due to surgery or lesions. Pain is a common and debilitating symptom of the disease. Patients experience both somatic and visceral types of pain. Somatic pain arises from triggering sensory nerves that are located in skin and tissue like tendons, muscles, and joints. Visceral pain comes from within the inner organs, abdomen, and skeleton and can be referred to other locations.

Endometriosis is an unusual condition because of the potential of a variety of different mechanisms to generate pain. These include direct compression/infiltration of nerves by the lesions, inflammatory pain due to the enhanced inflammatory environment of the pelvis and ‘neuropathic’ pain secondary to damage of pelvic nerves during surgery or of the new nerves directly infiltrating the lesions.

- Central Changes Associated with Chronic Pelvic Pain and Endometriosis

Endometriosis symptoms have a substantial impact on quality of life including the physical, emotional, and social wellbeing of patients. Symptoms are reported to disrupt all aspects of patients' daily lives and are characterized by physical limitations that significantly disrupt health and work performance. It's no exaggeration to say that endometriosis can cost patients their bodily organs, bodily functions, dignity, financial security, careers, and so much more.

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

Comorbidities

To further complicate the presentation of symptoms, endometriosis is found to have many comorbidities, or related conditions. Possible comorbidities include migraines, asthma, allergies, hypothyroidism, chronic pain, fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, lupus, and multiple sclerosis. Since endometriosis is commonly located in the pelvic cavity, chronic pelvic pain is another significant comorbidity. Pelvic structures including the bowel and bladder are often affected. Tellingly called the "evil twins", endometriosis is commonly associated with interstitial cystitis, or painful bladder syndrome. The IC Network is an excellent resource for interstitial cystitis.

Endometriosis often coexists with other gynecological conditions, including adenomyosis and fibroids. Adenomyosis is defined by the presence of endometrial glands or stromal tissues on the myometrium, which is the smooth muscle tissue of the uterus. Similarly to endometriosis, adenomyosis can cause intense pelvic pain and menstrual cramping. Other symptoms can include heavy menstruation, clots, pain with urination, and pain with sex.

Fibroids are noncancerous, or benign, tumors on the uterus. These growths of smooth muscle and fibrous tissue are also called leiomyomas or myomas and range in size from as small as a pea to as large as a melon. Fibroids can be asymptomatic or cause significant symptoms that include heavy bleeding during menstruation, painful menstruation, pelvic pain, pain with sex, infertility, urinating frequently, and constipation.

It’s important to note that Black women have a higher prevalence of both adenomyosis and fibroids. Substantial data shows that Black women have more severe disease, including earlier age of onset, more fibroids, and increased symptoms and impairment.

Endometriosis patients are also at a higher risk of ovarian and breast cancers and some autoimmune, cardiovascular, and atopic diseases. There is no current explanation or understanding in how these conditions overlap but the prevalence is significant. Further research is needed to understand the connection between these conditions.

Increasing evidence suggests that endometriosis patients are at higher risk of several chronic diseases. Although the underlying mechanisms are not yet understood, the available data to date suggest that endometriosis is not harmless with respects to patient’s long-term health.

- Endometriosis: A High-Risk Population for Major Chronic Diseases?

When approaching medical care and treatment, it’s important to understand that there are wide-reaching effects to having multiple diseases. Healthcare providers who do not address this reality will not be able to treat endometriosis or manage the symptoms successfully. The complexity of endometriosis and the diversity of related conditions demand a multidisciplinary approach to care. Often this will entail the care of several specialists, including gynecology, urology, gastroenterology, acupuncture, physical therapy, and beyond. A further discussion on treatment options can be found in Treatments for Endometriosis.

Key Facts to Keep in Mind as You Seek Care

• Be wary of providers who believe that your pain and symptoms must be cyclical and relate to your menses. This is not accurate since many patients will experience chronic symptoms.
• Endometriosis and its related conditions manifest as a unique presentation in each patient so no two patients have the same symptoms and comorbidities. You care must be individualized to your specific needs.
• Do not accept a dismissal of your symptoms as unrelated or unimportant. You should be heard. Your symptoms should be further investigated and ruled out accordingly. Endometriosis has many comorbid conditions, including several autoimmune diseases.
• The effects of having multiple diseases is wide-reaching and demands a multidisciplinary approach to care. Your care team will likely include several providers from various specialties.
• Endometriosis specialists are highly trained, skilled surgeons who have dedicated their training and professional practice to treating this complex disease. Gynecologists are not equipped to perform the complex surgery needed and should refer patients to a capable and knowledgeable specialist.

While the cause(s) of endometriosis remains largely unknown, theories abound. In the next part of the series, Causes of Endometriosis, theories on etiology are examined.

Endometriosis Series

1. Endometriosis 101
2. Symptoms of Endometriosis
3. Causes of Endometriosis
4. How Endometriosis Is Diagnosed
5. Treatments for Endometriosis
6. Surgical Treatment for Endometriosis
7. Hormonal Medications for Endometriosis
8. Complementary and Alternative Therapies for Endometriosis
9. Endometriosis in Adolescents and Teens
10. Endometriosis Resources
11. Endometriosis Books