The Difficulty in Finding an Endometriosis Diagnosis—and How Technology May Change That

March is endometriosis awareness month. And if you don’t know what it is, don’t worry, many people don’t.

What is endometriosis?

Endometriosis is a condition in which tissue that is supposed to line the inside of the uterus starts to grow outside of the uterus, spreading to areas such as the ovaries, fallopian tubes, and pelvis. Usually a woman’s body discards the tissue inside of the uterus during menstruation, however, when the tissue grows outside of the uterus, there is no way for it to exit the body.  

This tissue turns into lesions, which grow and bleed during menstruation just the same as the tissue inside of the uterus would, resulting in exorbitant pain for some women.

According to the American Journal of Obstetrics and Gynecology, women who have endometriosis report symptoms of debilitating pain during menstruation, during and after intercourse, chronic pelvic pain, infertility, back pain, and bladder or bowel problems.

Over 200 Million Women Worldwide have Endometriosis

An estimated 200 million women and teens worldwide are affected by endometriosis, and one out of 10 women in the United States suffer from the disease. The numbers are expected to be much higher; however, lack of research and awareness makes it hard to gauge exact numbers.

Endometriosis can have a negative impact on a multitude of things in a woman’s life including sexual relations, appetite, exercise, sleep, and emotional well-being.  

Part of the problem in understanding how many women are actually affected by endometriosis stems from the lack of knowledge among the general public and medical professionals.

Why it’s so Hard to Get an Endometriosis Diagnosis

According to the Endometriosis Foundation of America, it takes on average 10 (!!) years for a woman to be diagnosed with endometriosis in the United States.

The reason for this lag time is partially accredited to the normalization of menstrual pain. As a society, we assume that pains associated with the pelvic area are “typical” and come with the role of being a woman.

Another nuance is that symptoms reported for endometriosis are not unique to the condition itself, which can lead to misdiagnosis. Endometriosis varies in symptoms and symptom severity in patients. These factors make diagnosing endometriosis difficult for medical professionals.

Thus far, the only way to get an exact diagnosis for endometriosis is by laparoscopic surgery. This surgery entails a surgeon making an incision in a patient’s abdomen through which a tiny camera is inserted. This camera allows the surgeon to see what is inside of the abdomen, and small to medium-sized lesions can be removed during this procedure.  

With awareness slowly spreading, non-invasive methods of diagnosis and a push to better understand the disease are starting to appear.

Tools are Appearing to Help Detect and Diagnose Endometriosis

One of the most recent tools that has surfaced to help study endometriosis is Phendo. Phendo is an app created by researchers at Columbia University, and its sole purpose is to collect data from users, which will be used by researchers to better understand the disease from the perspective of the patient.  

The data from this app, which is being currently used by over 6,000 users, will be taken and studied in hopes that a more “comprehensive description of the disease” can be established.

NextGen Jane is another project that has recently emerged as a means to diagnose the disease. Ridhi Tariyal and Stephen Gire, the creators of the start-up, hope to use menstrual blood to diagnose endometriosis.

One of their patents is a device that squeezes blood out of tampons. Menstrual blood, which in addition to blood also contains endometrial lining and cervical and vaginal cells, can open the door to easily diagnosing endometriosis and a slew of other conditions.

It has yet to be approved by the U.S. Food and Drug Administration, but once it is, clinical trials will take place in order to test its efficacy.  

It is important to note that there is currently no cure for endometriosis. This is a condition that women have to spend the majority of their lives managing. For now, to keep the disease at bay, patients are prescribed anti-inflammatory drugs, birth-control pills, and progestin.

Developments in technology, coupled with a growing awareness of endometriosis, gives hope that early diagnosis and most importantly, a cure will soon become a reality to women worldwide.

Featured image by Fatima Fuentes

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