I’m sure many of you have no idea that March is Endometriosis Awareness month. I’m sure even more of you have no idea what endometriosis is.

Endometriosis is an often underdiagnosed and misunderstood medical condition that affects approximately 10 percent of women worldwide between the ages of 15 and 44 — though many women report having symptoms with their first period.

Despite how common endometriosis is, an estimated 65 percent of women are initially misdiagnosed due to lack of education on the subject.

The average gynecologist or obstetrician may not have a lot of experience with this disease despite over 190 million women a year being diagnosed with endometriosis, leaving many women unaware of their condition.

To put it simply, endometriosis is when there is endometrial tissue growing in areas it should not be in your body. This tissue, similar to the inner lining of the uterus, grows outside of the uterus and can affect the ovaries, fallopian tubes, the tissue lining the pelvis and other organs surrounding the area.

It acts just as the lining of the uterus should — thickening, breaking down and bleeding with each menstrual cycle. But because it grows in areas it should not, it doesn’t have a way to leave the body. This causes the surrounding tissue to become irritated and form scar tissue, as well as bands of fibrous tissues called adhesions.

These adhesions can cause pelvic tissues and organs to stick to each other, causing pain that is typically worse than usual period cramps, and could become worse over time.

Around half of women diagnosed with endometriosis will experience infertility, along with a higher percentage of women experiencing a whole host of disabling symptoms — including but not limited to, excruciatingly painful cramps during and/or outside of menstruation, fatigue or sleep problems, heavy or irregular periods, pain with urination and bowel movements, dyspareunia, development of cysts, intense bloating, migraines and more.

One of the tricky factors in diagnosing endometriosis is that it is diagnosed primarily through a surgical procedure called a laparoscopy — which is the only way to get a definitive diagnosis. Ultrasounds are also utilized as a tool towards the diagnosis, but they cannot confirm a diagnosis on their own.

I was diagnosed with endometriosis in 2022 after a decade of switching from doctor to doctor, specialist to specialist across the Commonwealth.

Since I was 13 I have had painful and unpredictable menstrual cycles that made day-to-day life extremely difficult. From ages 13 to 22 I cycled through medications, IUDs and shots in unsuccessful attempts to curb the symptoms I had in and out of my menstrual cycle.

Over and over, my mother and I’s concerns about my failing health were brushed off. One of my gynecologists actually suggested I see a psychologist before returning — as though I were making my symptoms up.

It was only through self-advocacy and determination that I finally got scheduled to see a doctor who was willing to perform a laparoscopy to diagnose me for certain.

Later, once officially diagnosed, I saw a specialist that not only listened to my concerns, but also urged me towards improving my quality of life through alternative methods and treatments rather than pushing more pills.

There is no cure for endometriosis.

Each case of endometriosis is different. For some people, a full hysterectomy will eradicate the symptoms. For others, a simple surgery to go in and remove all the adhesions possible will do wonders.

For me, personally, because my endometriosis had progressed so extensively, my option is quality of life improvement. Surgery to remove offending tissues helped for a while, but my symptoms will never go away — it isn’t a case of if my endometriosis will grow back, but when.

If you or someone you know have experienced debilitating menstrual cycles, you should absolutely reach out to your doctor and discuss the possibility of endometriosis.

If your care team finds the disease sooner, rather than later, there is a high possibility that you will be able to find the endometriosis early and be able to get a handle on your symptoms.

To learn more about this life-altering disease, visit the Endometriosis Association’s website at endometriosisassn.org

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Breanna Hanley is a staff reporter for The Express.