Medically reviewed by: Melissa A. Delgado, MD, FACOG
Melissa A. Delgado, MD, FACOG is the founder and owner of The Chronic Pelvic Pain Center of Northern Virginia. Dr. Delgado is an experienced, board-certified OB/GYN and has spent the past 10 years dedicating her time to understanding complex and persistent pelvic pain.
Have you ever heard of endometriosis? If you haven’t, that’s not too surprising—it’s not the kind of condition you learn about in school. And if you have, chances are you never heard of it until you were much older, because it isn’t often talked about or discussed.
This lack of endometriosis awareness is a serious problem. It can lead to delays in diagnosis and treatment, causing significant physical and emotional distress for anyone living with the condition.
In this article, we'll discuss the importance of endometriosis awareness and go over the common and uncommon symptoms of the condition, diagnosis, treatment options, and self-care tips.
What Is Endometriosis?
Endometriosis is a chronic, painful condition that affects around 10% of all women of reproductive age. Yet despite its prevalence, endometriosis is still widely misunderstood and misdiagnosed.
It’s a difficult-to-diagnose condition in which tissue similar to the lining of the uterus grows outside the uterus, typically in the pelvic region. This tissue can cause inflammation, scarring, and adhesions, leading to chronic pain and infertility.
Endometriosis can also affect other organs, such as the bladder and bowel, leading to a wide range of symptoms that are not necessarily unique to endometriosis (and which also makes it harder to properly diagnose).
The Importance of Endometriosis Awareness
Unfortunately, endometriosis awareness is lacking around the country, and perhaps around the world. Increasing endometriosis awareness is essential for many reasons:
Reduce the stigma surrounding the condition: Many women with endometriosis feel ashamed or embarrassed about their symptoms, which can lead to delays in seeking help. By raising awareness and educating the public, we can help to break down these barriers and encourage women to seek medical advice.
Earlier diagnosis and treatment: Because endometriosis is so often misdiagnosed as a more common condition with similar symptoms, like irritable bowel syndrome or pelvic inflammatory disease, people living with endometriosis can suffer for many years before finding adequate treatment options.
Drive research into the condition: Currently, there is no cure for endometriosis, and it doesn’t attract funding or grants the same way that, say, cancer research does. But with more endometriosis awareness and more research being devoted to understanding its causes and potential treatments, we can improve outcomes for millions of people worldwide—and perhaps even find a cure one day.
Common Symptoms of Endometriosis
The most common symptom of endometriosis is pelvic pain, which may be severe and debilitating.
The pelvic pain associated with endometriosis is typically cyclical, occurring before or during menstruation, and may also occur during sex (dyspareunia) or when you’re going to the bathroom. ‘Deep’ dyspareunia has been observed in up to 50% of women diagnosed with endometriosis.
Lower back pain is also a common symptom of endometriosis. This pain may be caused by the inflammation and scarring caused by the condition or may be related to the position of the endometrial tissue. Lower back pain may be constant or may occur at intervals. It can also be accompanied by other symptoms, like leg pain.
Other common symptoms of endometriosis can include heavy or irregular periods, fatigue, and infertility.
Uncommon Symptoms of Endometriosis
In addition to the more common symptoms, endometriosis can also cause a range of lesser-known symptoms that can also lower a person’s quality of life over time. These uncommon symptoms may include:
Chronic fatigue
Insomnia
Depression
Nausea & vomiting
Diarrhea
Bladder pain (can include UTIs, difficulty urinating, and blood in urine)
Abdominal pain (people with endo are 13x more likely to report this pain)
Chest pain (the next-most-likely area for people with endo to feel pain)
Flank pain (affects nearly 25% of people with ureteral endometriosis)
Nerve pain (affects nearly 40% of people diagnosed with endometriosis)
Receiving an Endometriosis Diagnosis
As you can see, there’s a reason why endometriosis is so often misdiagnosed as another condition. There are so many potential symptoms that anything short of a full diagnostic test may not be enough to achieve a correct diagnosis.
A proper diagnosis of endometriosis usually involves a combination of medical history, physical examination, and imaging tests. Biopsies may also be required.
Laparoscopy is currently the gold standard for diagnosing endometriosis, providing a direct view of the pelvic organs and allowing for the removal of any endometrial tissue.
Treatment Options for Endometriosis
There are several treatment options available for endometriosis, depending on the severity of the condition and the woman's individual needs. Pain relief medications, such as non-steroidal anti-inflammatory drugs (NSAIDs), can help to manage pain and inflammation.
Meanwhile, traditional hormonal therapies, such as birth control pills or gonadotropin-releasing hormone (GnRH) agonists, can help regulate menstrual cycles and reduce pain. Surgery, such as laparoscopy or hysterectomy, may be necessary to remove excess endometrial tissue and adhesions.
Surgery is also one of the most effective treatments for endometriosis. In severe cases of endometriosis, laparoscopic or robotic surgery may be necessary. However, endometriosis can and often does come back after surgery, especially if the surgeon did not remove enough endometrial tissue.
Self-Care Tips for Coping With Endometriosis
In addition to medical treatment, there are several self-care tips that can help women with endometriosis manage their symptoms. These include practicing relaxation techniques, such as meditation or yoga, maintaining a healthy diet, and getting regular exercise.
Women with endometriosis should also prioritize self-care and seek support from friends, family, or mental health professionals if needed.
Spreading Endometriosis Awareness
The lack of awareness surrounding endometriosis has caused countless people to suffer needlessly and, in many cases, even waste their money on misprescribed medications and treatment regimens.
By spreading awareness about endometriosis, we hope to not only reduce the stigma surrounding the condition, but also to ensure earlier diagnosis and treatment, ultimately driving more research into better treatments and, hopefully, a cure.
If you or a loved one are experiencing any potential symptoms of endometriosis, don't suffer in silence — speak to your healthcare provider and seek support from others who understand what you're going through.
Remember, early diagnosis and treatment can help to manage symptoms and improve quality of life.