By Molly Gries, PT, DPT
Painful periods, heavy bleeding and fertility problems are not typical topics of casual conversation, but did you know that these symptoms can be caused by endometriosis? Endometriosis is a painful disorder in which tissue that normally lines the uterus grows outside the uterus. It is linked to estrogen and is an inflammatory condition that is typically worse during menstrual cycles.1,3 With endometriosis, the endometrial-like tissue acts as endometrial tissue would — it thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other affecting fallopian tubes, ovaries, uterus, and other organs in the pelvic and abdominal cavity including the rectum, bladder, vagina, and intenstines2. Endometriosis can affect 6-10% of women during reproductive age and among those, 35-50% of women experience pain, infertility, or both. Despite the prevalence of endometriosis in women, it is oftentimes underdiagnosed and on average takes 6.7 years to definitive diagnosis.1
What are the symptoms?
The most common symptoms associated with endometriosis are painful periods, excessive cramping during menstrual cycles, abnormal or heavy menstrual flow, pain during intercourse, painful urination and bowel movements, infertility, and other gastrointestinal problems. Sometimes, endometriosis manifests as back pain, pelvic pain, even leg pain – which is why some patients with endometriosis are diagnosed by a physical therapist treating them for musculoskeletal pain. Luckily, most women do not exhibit all these symptoms, and several may have a range of symptoms varying in severity based on amount and location of the disease.1,3
Dysmenorrhea, or painful periods, is one of the most common symptoms for endometriosis. While it is normal to experience mild pain for 1-2 days during your menstrual cycle, this should not interfere with daily activities and only last a few days.2 If you frequently must miss work or school, experience significant pain, nausea and/or vomiting with your period, this is outside of normal, and you should discuss these symptoms further with your healthcare providers. Endometriosis is one of the most common causes of infertility and can be found in 24-50% of women who experience infertility. Oftentimes, infertility associated with endometriosis is temporary.1
What causes endometriosis?
While there are many hypotheses, dating back to the 1920s, there is no unifying theory about the root cause of endometriosis. The most common theory is that uterine tissue, endometrium, moves up the fallopian tubes and into the reproductive organs or abdominal cavity during menstruation. This then causes an inflammatory response by white blood cells called macrophages. It is common for endometrium to move into the fallopian tubes and abdominal cavity, most of the time the tissue does not implant onto the tissues and is simply reabsorbed into the body. The reason behind the implantation of the tissue cells is highly debated, however it does seem associated with genetic predisposition, hormonal influences of estrogen and progesterone and general inflammation.1
How is it diagnosed?
Endometriosis is slow to diagnose partly due to the best diagnostic test being an exploratory laparoscopy to look for endometrial lesions and adhesion. MRIs, ultrasound, and pelvic exams may also be used during diagnosis. Frequently, history taking and discussing symptoms with your healthcare provider is the first step to diagnosis and management. There are 4 stages of endometriosis ranging from mild to severe and are dependent on the number of lesions, location, and amount of blockage of the fallopian tubes. However, the amount of disease and severity of symptoms is not always correlated.3
What can you do?
The first step to getting treatment is taking to your healthcare provider about your painful periods and the trying to identify the root cause of your symptoms. Often, the first step is starting with pain management with use NSAIDS, relaxation techniques, heat, and other conservative measures. Frequently, general stretching and yoga can help with pain management. Other treatments include hormone therapy, laparoscopy for removal of lesions, fertility treatment and hysterectomy. Seeking help from a pelvic floor physical therapist can help with pain management, teaching exercises and stretches and working with coordinating pelvic floor and core muscles to help with symptom management. Physical therapy is a good fit for all disease management, including conservative care, pre- and post-operatively.2,3
Painful periods, painful intercourse and heavy menstrual cycles are outside of the norm. If your period is causing you to miss work or school on a regular basis, endometriosis may be the cause.2 Working with a physical therapist that specializes in pelvic heath can help you with pain management and vastly improve your quality of life. Your physical therapist can also refer you to the appropriate medical provider that can evaluate you for pain relieving medications, hormone therapy, laparoscopy, or in rare circumstances, hysterectomy.
1. Burney, R. O., & Giudice, L. C. (2012). Pathogenesis and pathophysiology of endometriosis. Fertility and Sterility, 98(3), 511–519. https://doi.org/10.1016/j.fertnstert.2012.06.029
2. Endometriosis. Johns Hopkins Medicine. (n.d.). https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis.
3. Mayo Foundation for Medical Education and Research. (2018, July 24). Endometriosis. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661.
Addendum: While this article mainly discusses two of the major theories of the root causes of endometriosis, we are remiss to not include the theory of metaplasia. Epithelial metaplasia is when cells that are present in the lining of the abdominal cavity normally change into endometrial tissue due to hormonal or immunological factors and thus create endometrial lesions in close and remote areas of the pelvis and abdominal cavity. While there is currently no known theory behind the causes of the endometriosis, scientists are working hard to determining the best cause and how that drives treatment of endometriosis.
2 thoughts on “What is Endometriosis?”
I was diagnosed with stage 4 endometriosis including on the bowel and diaphragm, and have had 5 endometriosis surgeries. The pain I experienced was often debilitating and no pain meds were of any help. Over 10 years, I have seen more than 10 gynecologists before Dr. Mosbrucker performed expert laparoscopic excision. Most of the 10 gynecologists I saw were not up to speed on the recent endometriosis research, and I did not receive appropriate care for my condition. My understanding from what I have learned from the leading experts on endometriosis, is that the explanation of what causes endometriosis (Sampson’s theory) in this article is outdated information. Dr. Mosbrucker provides a more up-to-date explanation on Pacific Endometriosis’ website. Many gynecologists still are using Sampsom’s theory (reflux menstruation) to explain endometriosis, even though it has been debunked. Nancy’s Nook’s website is an endometriosis education site that has extensive research and articles which I found very helpful. Links to both are below. I am passionate about sharing the recent research and treatment of endometriosis so that others do not have to wait as long as I did to receive proper care. A proper understanding of what causes endometriosis is key because a wrong understanding leads to ineffective treatment.
Pacific Endometriosis: https://pacificendometriosis.com/what-is-endo/
Nancy’s Nook: https://nancysnookendo.com/about-endometriosis/
Hi Stephanie, Many thanks for pointing out that Dr. Molly Gries/we missed discussing this theory. Dr. Gries has updated the blog to include more information based on your feedback and input from Dr. Mosbrucker and her blog. We welcome any other resources or information you want to provide regarding endometriosis or your experiences. Hearing a patient’s perspective is always helpful to so many.