Endometriosis: Why We’re Finally Talking About It
March is Endometriosis Awareness Month. Here is a breakdown of endometriosis—from causes to symptoms to treatments.
What is endometriosis?
Endometriosis is a condition in which endometrial tissue—cell tissue from the inner lining of the uterus—grows in areas outside the uterus.
“The cells that line the uterus function to build the lining of the uterus throughout the menstrual cycle,” Dr. Jennifer Blaber, minimally invasive gynecological surgeon at Stony Brook Medicine in New York, explains. “If pregnancy is achieved, that creates a hospitable environment for an embryo to implant and then grow within the uterus. However, when pregnancy does not take place during that menstrual cycle, the lining is shed as a period.”
“When [the cells] are located in places that they shouldn't be, the cells do something similar: they become inflamed or really proliferate and then shadow bleed at that time when a pregnancy is not achieved,” Dr. Blaber continues. “So when the cells are located in places [outside] the lining, the cycle of inflammation causes some scarring in those areas.”
The most common places for endometriosis to occur are:
Ovaries,
Fallopian tubes, and
Pelvic lining and ligaments
It can also happen on or around the bladder, cervix, intestines, rectum, and stomach.
Endometriosis affects an estimated 1 in 10 women in the United States, but research is finally catching up. A 2022 study looks at how endometriosis, referred to as the “missed disease,” has been inadequately handled in diagnoses and treatments and largely ignored in policy and funding worldwide.
Healthcare professionals have come up with a few potential causes of endometriosis, including:
Genetics: some people may have genetic predispositions to the condition
Blood/lymphatic transport: the cells are transported from the uterine lining to other areas through the bloodstream or lymphatic system
Transplantation: the cells attach themselves to other areas of the body after a surgery, such as a C-section
Transformation: cells in other areas of the body mutate into endometrial cells
Reverse/retrograde menstruation: instead of the uterine lining shedding out of the body during the period, it could go up into the fallopian tubes and abdomen
What are the most common symptoms?
According to Dr. Blaber, the “hallmark symptoms” of endometriosis include:
Pelvic pain,
Period pain, and
Pain during intercourse
Other symptoms are:
Heavy or irregular periods
Pain with urination or bowel movements during a menstrual cycle
Diarrhea or constipation during a menstrual cycle
Spotting or bleeding between menstrual periods
Fatigue or low energy
A major long term concern of people with endometriosis is fertility issues. Different stages of endometriosis bring different levels of complications, with the most severe cases leading to infertility.
Previous research has suggested that at least 30% of people who have endometriosis also experience infertility, and at least 25% of people who are infertile are also diagnosed with endometriosis.
What are the treatment options?
There is no cure to endometriosis at this time, but Dr. Blaber says there are common treatment options.
“There are ways we can treat endometriosis with medications by suppressing or turning off the menstrual cycle,” she explains. “If we [adjust] the menstrual cycle, then those cells that are located in places they shouldn't be will become inactive. If they become inactive, then that cycle of inflammation and scarring is turned off or turned down, and the symptoms that go along with that cycle, meaning the pain, the future infertility, those things can be improved.”
However, she acknowledges that if the endometriosis has progressed to developing large cysts on the ovaries that are filled with blood, surgery becomes necessary.
“If there is scarring to the point where there's a distortion in the patient's anatomy and we want to improve fertility outcomes, those are things that we can accomplish [with] surgery.”
Dr. Blaber emphasizes that doctors will begin treating endometriosis with “simple things,” like oral contraceptives.
As far as accessibility, she adds these treatments are commonly covered by insurance. “First line treatment would be something like a birth control pill, [and] that is very accessible to our patients here in New York,” she says.
What are the perceptions surrounding endometriosis?
“Menstrual pain or pain with intercourse has been normalized through the years, and that has impacted our ability to know how many patients are affected by [endometriosis],” Dr. Blaber says. “But also on an individual patient level, when a patient feels like they've been told for years that what they're experiencing is normal, they don't seek the care that they need, and they learn to live in a way that they shouldn't be living.”
As research and information on endometriosis continues to develop, Dr. Blaber thinks raising awareness of the condition needs to be prioritized.
Stay tuned to this newsletter for stories from patients who finally found answers.
“It isn't normal to have a period that affects your life in a way that you cannot function, and it is not normal to have excruciatingly painful sex,” she says. “Raising awareness that these are not normal things [and] that there is treatment available out there is the best thing that we can do to break down those barriers and achieve success for our patient population.”