March is Endometriosis Month; during this month we take a closer look at a disorder that affects approximately 10% of people assigned female at birth.
Endometriosis is an inflammatory disorder, often attributed solely as reproductive dysfunction, where endometrial-like cells are found outside the uterus. The most common locations for endometrial-like lesions include on the ovaries, fallopian tubes, pelvic wall (peritoneum), and the bowel/bladder. The most common symptoms include general pelvic pain, very heavy and painful periods (dysmenorrhea), and pain with intercourse (dyspareunia). However, up to 50% of people with endometriosis do not exhibit any symptoms. In these cases, the presenting concern is often infertility.
Endometriosis has one of the longest delays between onset of symptoms and diagnosis of any disease! The average time to diagnosis is 5-11 years! That is many long years of unexplained pain and frustration. Overall, the healthcare system is quick to dismiss female pain as “normal” without investigating any potential underlaying issues.
There are also misdiagnoses that may later be identified as endometriosis. One of the most frequent is irritable bowel syndrome (IBS). Endometrial lesions attach to the bowel or bladder, causing irritation and pain that is then called IBS when there is another cause.
How is Endometriosis Identified/Diagnosed?
One of the primary reasons that endometriosis has a delayed diagnosis, is that the gold standard to identify the disease is an exploratory surgery. Although a person’s symptoms can all point to endometriosis, the only way to truly diagnose it is laparoscopically identifying the endometrial-like lesions in the pelvic cavity. Many people do not wish to have an operation that may or may not improve their symptoms or give them an accurate answer; practitioners also denying or minimizing symptoms also delays access to this surgery. During the surgery, if lesions are identified, they may be excised or ablated; however, if all the endometriomas are not removed, then the condition could persist. Following surgery, there is also a high recurrence rate, up to 50% over 5 years.
Endometriosis is graded from Stage I to Stage IV, corresponding to the number of lesions present. However, the degree to which lesions are present is not necessarily correlated with the severity of symptoms (e.g., more lesions do not always mean more pain). More advanced cases of endo are also associated with blocked fallopian tubes and physical distortion of the reproductive tract that impairs pregnancy success.
Alternatives to surgery can include deeper pelvic ultrasound (including presence of a “chocolate cyst”, which is a classic endometriosis symptom) and MRI.
Endometriosis and Infertility
There is much debate on the best options for patients with endometriosis who are experiencing infertility. If ages of the patients are under 35 and normal semen parameters, then a surgical excision of Stage I and II endo followed by attempts at natural conception or IUI tend to be quite successful (50% within 1 year of follow up). However, if the female age is >35 and/or the stage is more advanced (III and IV), then IVF may be considered as a priority treatment. If the endometrial lesions are predominantly on the ovary/ies or are particularly large (endometrioma), then this could impede egg retrieval; conversely, surgical removal may damage ovarian structure which would impair future fertility.
Right now, how endometriosis develops is still a mystery. There appears to be a genetic component to disease onset; if any closely related family members have endo, then someone is more likely to develop the condition. There are also regional differences, people of south east and eastern Asian decent are more likely to develop endometriosis. The most prevalent theory is the “backflow” hypothesis, where menstrual flow exits the uterus via the fallopian tubes and spills into the peritoneal cavity. However, this does not explain all the cases of endometriosis because lesions can be found in other areas where backflow could not occur, such as the lung cavity; there have even been a small number (16) cases reported in cis men! So, the progression of this inflammatory disease is not as easily explained.
The best way to reduce the delay to diagnosis is to talk about your pain! We often don’t share information about our cycles and how can you know if you don’t fit the norm if you don’t know what everyone else experiences? Talk to your primary care provider about any pelvic pain you experience or severe cramps during menstruation that interfere with your daily activities.
