I will first start with a clinical explanation of what Endometriosis is, taking from John Hopkin's website and video. The video is a helpful visualization of endometriosis.
Endometriosis is a condition where the inner lining of the uterus (called the endometrium) is located outside of the uterus. The endometrium is the aspect of the uterus that sheds monthly if there is no fertilized egg implanted into the wall of the uterus. This tissue responds to monthly hormones fluctuations and sheds EVEN WHEN IT IS NOT LOCATED WITHIN THE UTERUS. This results in inflammation, scar tissue, organs becoming "stuck" with abnormal mobility, and pain. Common areas for this tissue to be is on the ovaries, on the rectum behind the uterus, and along the colon and small intestines. It's less common, but endometrial tissue has also been found in areas outside of the pelvic cavity, including the thorax around the lungs and even in the nasal cavity (1). It is estimated that 1 in 11 women have endometriosis and it takes on average 10 years and several providers for someone to be diagnosed with endometriosis. By that time, the condition can worsen to different stages. Endometriosis is only diagnosed via laparoscopy, which is a surgery that looks into the pelvic cavity and usually biopsies suspicious tissue. Pelvic ultrasounds and CT scans are not beneficial in diagnosing.
Stages of Endometriosis:
Stage 1: Small amounts of endometrial tissue planted outside of the uterus and surrounding organs, but no signs of significant adhesions.
Stage 2: Superficial to slightly deeper implants into the surrounding tissue in less than 5cm in diameter without significant adhesions.
Stage 3: Many deep implants, small cysts on one or both ovaries and thick bands of adhesions.
Stage 4: Widespread with many deep implants and thick adhesions. There can also be large cysts on one or both ovaries.
There is no known cause of endometriosis and it does not discriminate against racial lines or ages. It can cause significant impacts on fertility and intimacy as some women have pain with intercourse. Below are consistent signs and symptoms of endometriosis.
Pain in the pelvic region, especially with menstruation
Pain with intercourse
Abnormal or heavy menstrual flow
Irregular menstrual cycle
Difficulty becoming or staying pregnant
GI issues such as constipation or diarrhea, exacerbated around the time of menstruation.
It's important to note that some women do not notice pain and are unaware of their diagnosis until they try to conceive and realize their fertility issues. Some women don't have fertility issues but have significant pain. Medical providers have been taught to utilize a type of script that simulates an algorithm. Basically, if a patient has symptom "X", then you move on to another series of questions. It's a process of elimination and inclusion and when symptoms vary or appear vague at face-value, that process is not as reliable. Most ObGyn's perform palpation and can pick up on the thick adhesions, but that all depends on where the adhesions are. Not all primary doctors perform palpations beyond quadrant testing and palpating around the uterus and ovaries. Again, if the endometrial deposits are not there, then they may miss it. Another aspect to consider is that women have been trained for several generations to expect pain with their menstrual cycle. Most women get little sympathy, even from other women. They suffer in silence thinking that this is normal or they have been told that what they are experiencing is normal.
Here are some lesser known signs and symptoms of endometriosis:
Indigestion or Nausea/Vomiting
Urgency to urinate and pain with urination and pain with bowel movements.
Pain after intercourse
This is a highly misunderstood condition that is chronically overlooked in society. Endometriosis does not always progress consistently from stage to stage. A woman might start at Stage 1 when she is 17 years old and remain there for the rest of her life. Another woman might be diagnosed at Stage 4 at 32 years old with no pain symptoms but difficulty conceiving. It's not hard to see why this can take a long time to be diagnosed and for providers to overlook certain signs and symptoms. People can have bowel and bladder issues with Urinary Tract Infections or other infections. Nausea and vomiting can be associated with food poisoning or medicine sensitivities. Not every woman is comfortable informing her medical provider that they are experiencing pain with intercourse. There are so many grey areas with endometriosis and diagnosing it can be difficult.
Next in the series, we'll talk about treatment options and how to broach the topic with their medical provider.
1. Machairiotis N, Stylianaki A, Dryllis G, et al. Extrapelvic endometriosis: a rare entity or an under diagnosed condition?. Diagn Pathol. 2013;8:194. Published 2013 Dec 2. doi:10.1186/1746-1596-8-194