I Had Endometriosis. Here’s What I Wish I Knew Before I Was Diagnosed

Imagine having a critical medical condition and not even knowing it. That’s the situation Reddit user SaltyBerlin found herself in when her gynecologist told her that she had endometriosis on her right fallopian tube and ovary. Despite having ultrasounds done due to an ectopic pregnancy (a frequent sign of endometriosis), her condition was never diagnosed — or treated.

That’s why raising awareness is so important, and there’s no better time than during Endometriosis Awareness Month, which is observed annually in March. Understanding this illness can hopefully help educate the public about its symptoms and treatments, support research efforts, and ultimately create compassion for those who sometimes suffer in silence. 

What Is Endometriosis?

The stats are sobering. Endometriosis affects between 2%-10% of American women between the ages of 25 to 40, according to Johns Hopkins. Often referred to as “endo,” endometriosis is a chronic inflammatory condition where the lining of the uterus grows in other areas of the body, such as the ovaries, fallopian tubes, uterus, rectum, bladder, and even the bowel. 

The problem lies in the tissue (called endometrium) itself. During a typical menstrual cycle, the lining of the uterus thickens and sheds, causing bleeding. But the endometrial tissue that lies outside the uterus can’t shed, so it creates a buildup of endometrium and blood. The neighboring tissue may become irritated, forming scar tissue that can lead to adhesions.

Why Does Endometriosis Happen?

It’s not known exactly why endometriosis occurs. One theory is that endometrial cells migrate from inside the uterus to other parts of the body. It's also often attributed to a hormone imbalance, which causes cells to scatter throughout the pelvic region. Some researchers also think that endometriosis is the result of a weakened immune system that's unable to prevent cells from spreading.  

One thing is certain: multiple studies have shown that endometriosis is hereditary. When a person has a first-degree relative (think a parent, sibling, or child) who has the condition, those women are five to seven times more likely to have endometriosis, too. 

What Are the Symptoms of Endometriosis?

Endometriosis has a host of symptoms, but intense pelvic pain is by far the biggest indicator. This pain can be so overwhelming that it may prevent people from participating in normal everyday activities. Additionally, heavy blood flow (to the point that you could have blood in your urine or poop) is another symptom. Even going to the bathroom might cause you to double over in pain, contributing to tummy troubles like constipation, bloating, and diarrhea. Pain during sex and excessive fatigue are also common. 

How Does Endometriosis Affect Infertility?

It’s estimated that one in five women will suffer a miscarriage. For women with endometriosis, the risk increases to one in four. And while ectopic pregnancy might affect one in 100 women, that number more than doubles for those suffering from endometriosis.

On top of an increased risk for miscarriage and ectopic pregnancies, endometriosis can cause infertility. In fact, endometriosis is often cited as the underlying reason for infertility, according to a study published in the National Library of Science. The inflammation caused by this condition may create obstructions that block the egg from moving through the fallopian tube, affecting embryo implantation and impeding ovulation altogether. 

How Is Endometriosis Diagnosed and Treated?

Unfortunately, endometriosis isn’t always easy to diagnose, since its symptoms appear as an exaggerated version of the menstrual cycle. That’s why it’s critical for people who are enduring these symptoms to speak to their doctor. Your OB-GYN will probably perform a pelvic exam to determine if there are any cysts on the reproductive organs or order an ultrasound or MRI to look for visible signs of endometriosis.

A more invasive (but highly accurate) way to test for endometriosis is by laparoscopy. Under anesthesia, your surgeon will make a small incision near your navel and then use a laparoscope (which is like a tiny camera) to check for endometrial growths. 

Endometriosis does not have a cure, but there are options to treat this condition. Pain management is a priority, and medications like nonsteroidal anti-inflammatory drugs are often prescribed. Some patients receive hormonal treatments (think birth control pills, IUDs, etc.) to help regulate menstrual flow. Surgery — such as a laparoscopy or excision surgery — is very effective in removing endometrial lesions and tissue. 

Many women endure the pain that comes with endometriosis, but there are treatment options. Education is essential, and knowing what endometriosis is (and more importantly, what the options are to treat it) can empower women to make the choices that are right for them to live their best lives.

The image featured at the top of this post is ©Kmpzzz/Shutterstock.com.