How to Understand Endometriosis: A Guide to the Basics and Beyond

So, what exactly is endometriosis, and how can we understand it? It’s one of the most misunderstood, misdiagnosed conditions affecting millions of women worldwide. Let’s break down the facts.

1. What Is Endometriosis?

Imagine this: Tissue that’s normally only meant to be inside of the uterus grows outside of its designated home via retrograde menstruation (which is thought to be the leading theory behind how endometriosis forms). The fallopian tubes are an open passage, and some menstrual blood flows backwards and contains particles of endometrium that may have the potential to implant on the surface of other organs. We’re talking bladder, rectum, even the diaphragm!

And it doesn’t just stay there quietly. Like normal uterine tissue, it responds to hormonal changes, but it has no way to leave the body. As a result, it causes irritation and brings along a few unwanted companions: inflammation, fibrosis, and pain. The pain can be severe and persistent, affecting daily life for many people who have it.

2. What Does Endometriosis Feel Like?

The biggest red flag? Pain. Specifically, severe or debilitating pain with menstrual periods. But there’s more to it. Symptoms can range from painful periods to pain during sex (dyspareunia), pain with bowel movements, and also infertility. Some people experience daily pelvic pain. Other common symptoms include fatigue, bloating, and irregular periods. It may feel like your body is throwing a series of uncomfortable surprises every month.

3. Who Gets Endometriosis?

Endometriosis occurs regardless of background or lifestyle, affecting approximately 1 in 10 reproductive-aged women across various ethnicities and demographics. Endometriosis can begin developing as early as a person’s first period, though it’s most commonly diagnosed in women during their reproductive years. Additionally, if you have family members with it, such as your mom or sister, your chances of developing it may be higher.

4. How is Endometriosis Diagnosed?

Recent guidelines suggest that clinical symptoms and imaging findings may be sufficient for diagnosing endometriosis, though laparoscopy remains the gold standard. While symptoms and imaging can strongly indicate endometriosis, a definitive diagnosis often still requires surgery.

For certain lesions, such as endometriomas and deep infiltrative lesions, ultrasounds and MRIs can be helpful. However, the most common form of endometriosis “peritoneal” implants (stage I or II), are often too small to be detected without surgery.

5. Can You Get Pregnant with Endometriosis?

Infertility can be a challenge, but it’s not a guaranteed outcome and many women end up conceiving naturally. For some women, endometriosis is first discovered when they begin trying to get pregnant. Researchers are still studying how endometriosis impacts fertility. However, many women with endometriosis go on to have healthy pregnancies, sometimes with the assistance of fertility treatments.

6. What Else is Endometriosis Linked To?

Like an unwelcome guest who brings along uninvited friends, endometriosis is often associated with other conditions. Many people with endometriosis also experience other chronic pain and fatigue-related issues, such as migraines, irritable bowel syndrome (IBS), and fibromyalgia. There’s also a phenomenon called central sensitization (a term used to describe when your nervous system amplifies pain signals) and even autoimmune conditions, such as lupus or thyroid disorders.

So, What are the Treatment Options?

Treatment for endometriosis typically involves two main approaches: medication to regulate hormonal activity and surgery to remove endometrial-like tissue. If symptoms persist despite medication, your doctor may recommend surgery to excise the lesions. Endometriosis remains a challenging, recurrent condition to manage, and complete excision of the lesions is crucial for effectively managing the disease!

Whether you are navigating endometriosis yourself, supporting someone close to you, or simply seeking to understand more, this knowledge provides a meaningful foundation.

Endometriosis is a complex condition that requires ongoing research, increased awareness, and compassion!

For comprehensive insights, Dr. Seckin’s acclaimed books on the subject are invaluable resources. Works like “The Doctor Will See You Now: Recognizing and Treating Endometriosis” and “EndoMEtriosis: A Guide for Girls” offer essential information for both patients and their supporters!