Did you know that endometriosis affects 1 out of 10 women during their reproductive years (usually between the ages of 15-49), or about 15% of women worldwide (endometriosis.org)? The symptoms of endometriosis are cyclical debilitating painful periods, but can progress to chronic pelvic and abdominal pain, pain with intercourse, potentially leading to infertility.
To better understand endometriosis, diagnosis and treatment options, I had an opportunity to connect with Dr. Shyama Mathews, Gynecologist and Minimally Invasive Surgeon extraordinaire. She is board certified in gynecology, works at Penn Medicine at Princeton Medical Center and strongly advocates for endometriosis awareness, early diagnosis and her experience and empathetic approach offers those that suffer with endometriosis multifactorial treatments to restore quality of life.
“I think that the CLINICAL diagnosis piece of endometriosis is very critical, because so many women come to that conclusion way too late. By that point, it has affected their bodies, diet, relationships and their fertility, and so many aspects of their life before they have an idea of what is even going on!” -Dr. Shyama Mathews
Below are some of the highlights of our conversation, but translating it to writing doesn’t quite do it justice. So please listen below to our video so you don’t miss out on the robust information we talked about.
WHAT IS ENDOMETRIOSIS and what do we think causes it? Endometriosis is cells that are SIMILAR to the endometrial lining within the uterus (what is shed monthly with menstruation) that are found outside the uterus. These cells can be found along the walls or “wallpaper” of the pelvis, They can be found in the ovaries causing a cyst (endometrioma) also known as a “chocolate cyst” or can be found on the bowel, bladder or other organs. These cells are stimulated by hormonal changes, they become active and because they are not shed like our uterine lining, they can create local inflammation, adhesions, and scarring. These primary factors are where the symptoms of endometriosis come from…. one it creates inflammation and two, it creates scarring that can distort normal anatomy, hence causing very painful periods and potentially leading to bowel, bladder and sexual dysfunction.
“It can be a very challenging disease, b/c we have terminology that stages the disease, from very superficial to deep infiltrating, but a patient’s symptoms can be different and doesn’t always correlate to the degree of disease. With endometriosis it can be this inflammation factor that can vary how people present with symptoms.”
More research and focus needs to be put toward understanding the factors that cause endometriosis. There is a genetic component and we often see people within families having endo. There are also other conditions that are associated with endometriosis. One viable theory is that these cells develop and implant at the time we are developing as embryos, and perhaps factors within our body, environment, and hormonal influences “wake them up”. We both agreed that the old-school proposed theory of retrograde menstruation (meaning the uterine lining sheds out of the fallopian tubes and implants in the pelvis) seems to no longer be proven as a causative reason. Regardless, understanding the disease as very complex and needing more resources put into understanding endometriosis.
WHY DOES IT TAKE SO LONG TO DIAGNOSIS?
Dr. Mathews feels “there is not enough education on endometriosis and often takes a patient seeing multiple providers before they get to the conclusion of endometriosis. One of the statistics is seeing 3-5 specialists before they actually get diagnosed, and often it’s an 8 year journey from the start of their symptoms and seeking answers, until they finally get the word endometriosis even said to them!”
One of main reasons it takes physicians so long to make a diagnosis of endo is b/c the gold standard for diagnosis is surgery. Seeing the disease, getting a pathology sample of the tissue is often what seems to hold up the true diagnosis, however getting a clinical diagnosis can be done fairly quickly based on a few key questions.
HOW DO YOU DIAGNOSIS ENDOMETRIOSIS?
The gold standard for diagnosis is exploratory surgery, however not every patient needs to be taken to the operating room to suspect endometriosis. A clinical diagnosis based on understanding a patient's symptoms, medical history and key questions can at least start the conversation about endometriosis or “float the idea” that a person may have endo to watch for changes that may occur with disease progression. Some questions to consider:
- Do you have painful periods? Do you miss work or school because it is so painful?
- Nausea or vomiting because periods are so painful
- If taking birth control pills, why were you put on birth control?
- Pain or frequency with urination?
- Is intercourse painful?
- Bloating and constipation or painful bowel movements?
We also discussed the use of ultrasounds for diagnosis. Ultrasound should be “part of the investigation”, but often many patients have normal ultrasound findings. The more valuable information may come from a dynamic ultrasound, seeing how the organs are moving in relation to each other or how the normal anatomy is distorted.
Doing a physical examination could also yield a significant amount of information to lead toward making a clinical diagnosis of endometriosis. The movement of the organs (bladder, uterus, ovary and rectum) or the secondary ramifications of an over-active or painful pelvic floor, can lead to not only diagnosis but also guide treatment.
WHAT ARE THE TREATMENT OPTIONS FOR ENDOMETRIOSIS?
According to Dr. Shyama Mathews, “4 main things that need to come into the treatment”:
1. Diet: Low inflammation diet strategies potentially a low FODMAP diet. Eliminate first then to maintain,start slowly introducing food back into the diet.
2. Pelvic Floor Physical Therapy: Breathing, posture, pelvic floor muscle releasing and behavioral modifications, exercises
3. Medications: Hormonal medications to regulate estrogen stimulation. Central activating nerve pain medications can be a tool to help make progress and reset the nervous system, compounding local medications to relax the muscles or helping the local nerve response.
4. Surgery: “Surgery can fit in at any point of their journey”. Surgery is not just diagnosis but also for treatment. Excision (to cut out) vs. ablation (to burn the lesion) is the goal. “Most of the studies show that excision would lead to better outcome of a pain free interval and you are less likely to miss deeper lesions by just addressing the surface.”
The goal is management and improving quality of life, but we as providers are here to increase support, awareness, education and empowerment to help patients along their journey. At Activcore pelvic health, we offer one-on-one physical therapy treatments providing manual therapy, movement training and behavioral and educational strategies to restore your pelvic health and well-being.
Disclaimer: The views expressed in this article are based on the opinion of the author, unless otherwise noted, and should not be taken as personal medical advice. The information provided is intended to help readers make their own informed health and wellness decisions.