Understanding the Root Cause of Reproductive Misdiagnoses

Why we can’t keep ignoring women’s pain.

We are ignoring women’s pain.

A published in 2019, surveying 42,879 women across the world, found the following results.

Not only do 85% of women experience dysmenorrhea, or intense menstrual cramping, in addition to pelvic pain when on their period, but 77% reported some sort of psychological complaints, and 71% reported extreme tiredness.

When menstruating, 38% of all women reported not being able to perform all their regular daily activities. Out of the women that reported skipping usual tasks because of their symptoms, only 48.6% told their family that menstrual symptoms were the reason.

From the time she gets her first period up until menopause, the average woman will go through 450 periods in her lifetime, ranging between 2–7 days, although the length leans towards the latter end for most women. On average, that adds up to nearly a decade of her life that a woman is menstruating.

Yet, society has made nearly no progress towards helping women who suffer from severe menstrual complications. A culmination of the stigma surrounding the issue and a lack of understanding of the magnitude of the problem leave women thinking that intense and unbearable pain is normal not just during her cycle, but throughout the entirety of her reproductive years.

Let’s take endometriosis as an example, a common, but poorly understood disease that affects 1 in 10 women of reproductive age around the world. It occurs when tissue similar to the endometrium is found in other parts of the abdominal cavity, such as the ovaries, fallopian tubes, or tissues lining the pelvis.

Endometriosis is a chronic disease associated with severe pain during menstruation, sexual intercourse, bowel movements, urination, and/or everyday life. It can also result in chronic pelvic pain, abdominal bloating, nausea, fatigue, and even depression, anxiety, and infertility.

Yet the most shocking part is that the average woman in the United States will suffer from endometriosis for before actually receiving a diagnosis. In places where healthcare is government-funded, the wait for a diagnosis can take even longer, compared to healthcare that is self- or insurance-funded.

Endometriosis goes undiagnosed for years because the abdominal pain associated with the condition is mistaken for menstrual cramps. To get officially diagnosed, an individual has to undergo a surgical procedure that identifies the endometriosis lesions.

Women have to actually convince their doctors that their symptoms aren’t just “horrid cramps,” a task that proves to be nearly impossible. Over 61% of endometriosis patients have been told by multiple times that nothing was wrong with them.

The culmination of the lack of understanding on the part of patients and healthcare providers, and a level of stigma that stops women from openly addressing such issues, acts as a barrier against diagnosis and treatment.

The same can be said for a plethora of other reproductive conditions, from uterine fibroids to polycystic ovary syndrome, each of which affects millions of women around the globe.

Let’s take PCOS as another example.

PCOS, or polycystic ovary syndrome, is one of the most common causes of female infertility, affecting 6% to 12% (as many as 5 million) of US women of reproductive age. It occurs when women develop cysts on their ovaries, leading to a plethora of problems, from lack of ovulation to irregular hormonal production.

Most women with PCOS are insulin resistant, increasing their risk for Type 2 Diabetes, obesity, high blood sugar, high cholesterol, and other cardiovascular diseases

A common notion is that PCOS only affects women that are overweight or struggle from a related disease or one of the symptoms of the condition. But there is no cutout for what a woman with PCOS looks like or experiences.

PCOS affects women of all ethnicities, backgrounds, and sizes. It affects models and athletes to oppressed populations, 16-year-old girls to 45-year-old women. Women with cysts who are infertile and experience physical side effects like weight gain or acne, to women without cysts and don’t experience any physical symptoms other than irregular menstrual cycles.

Despite the range of issues caused by PCOS and the prevalence of the condition, PCOS can be difficult to diagnose because some of its symptoms have a variety of potential causes. Heavy menstrual bleeding and other irregularities, could be caused by a range of conditions, such as uterine fibroids, polyps, bleeding disorders, certain medications, or pelvic inflammatory disease, in addition to PCOS. More than 50% of women with PCOS remain officially undiagnosed and unable to receive the help they need.

A lack of education on the part of the range of what PCOS looks like in all different types of women, as well as a level of stigma about women opening up to healthcare providers, stops women from receiving adequate diagnoses.

In order to better address reproductive health concerns, we must begin to educate not just patients, but children, adolescents, and adults of all ages on sexual and reproductive health, and the implications it has. Just the same way we openly discuss and educate students on cancer, diabetes, and other diseases.

The lack of adequate education on sexual and reproductive health is stopping girls and women of all backgrounds from not only understanding more about their own bodies but in seeking help and sharing their stories.

Yet at the same time, we must start leveraging technology in order to address such concerns. Stigma and education will only allow women to seek help, but the diagnostic process is still long and inefficient due to the lack of specific metrics that many reproductive disorders have, including endometriosis and PCOS. In particular, AI and Machine Learning have a huge potential to improve the diagnosis of these disorders.

Through better diagnostic technology and platforms that allow women to monitor and track changes in their health themselves, we can create better patient and doctor integrations to address root causes of pain and more carefully monitor reproductive changes so that they can be more easily identified and treated. Furthermore, we can create tools to more easily diagnose and treat women in countries where healthcare access is unstable, and most women are unable to prioritize their health and wellbeing.

16 y/o working in healthtech & women’s health | a collection of my thoughts |