Endometriosis 101: Symptoms, Diagnosis, and Why It Is Often Missed

Written by Kristina Calligan
Woman holding her stomach area in pain from Endometriosis.

At Arcadia Women’s Wellness, we believe that pain deserves attention. Periods can be uncomfortable, but pain that changes how you live your life should not be dismissed.

Endometriosis is one of the most common reasons women experience painful periods, pelvic pain, pain with sex, and unexplained fertility concerns. It is also one of the most commonly missed gynecologic conditions. Many patients are told for years that their cramps are “normal,” their bowel symptoms are “just IBS,” or their pain is something they should simply push through.

“Painful periods that keep you from school, work, exercise, sex, or normal daily life are not something to normalize. Please get evaluated. Women deserve answers sooner, not years later.”‍ ‍— Kristina Calligan, FNP

What is endometriosis?

Endometriosis happens when tissue similar to the lining of the uterus grows outside of the uterus. These areas of tissue may be found on the ovaries, fallopian tubes, pelvic sidewall, bowel, bladder, or other pelvic structures. In some patients, endometriosis can also form ovarian cysts called endometriomas, sometimes referred to as “chocolate cysts.”

This tissue can create inflammation, irritation, scar tissue, adhesions, and nerve sensitivity. That is why endometriosis symptoms can feel much bigger than “bad cramps.” It can affect school, work, exercise, sleep, relationships, sex, digestion, bladder comfort, fertility, and overall quality of life.

Common symptoms of endometriosis

Endometriosis looks different from person to person. Some patients have severe symptoms, while others have few symptoms and only discover it during a fertility evaluation or surgery for another reason. Symptoms may include:

  • Painful periods, especially pain that starts before bleeding and lasts into or after the period

  • Pelvic pain that happens outside of your period

  • Pain with sex, especially deep pelvic pain

  • Pain with bowel movements or urination, especially around your cycle

  • Bloating, constipation, diarrhea, nausea, or “period flu” symptoms

  • Heavy bleeding, spotting, or irregular bleeding

  • Lower back, hip, rectal, or leg pain that follows a cycle pattern

  • Fatigue, brain fog, or mood changes related to chronic pain

  • Difficulty getting pregnant or unexplained infertility

One important point: the amount of pain does not always match the amount of disease. A person can have severe pain with minimal visible disease, or extensive disease with fewer symptoms. Your symptoms still matter.

Why endometriosis is often missed

Endometriosis is often missed because the symptoms can overlap with many other conditions. Painful periods may be blamed on “normal cramps.” Bloating, diarrhea, or constipation may be labeled as irritable bowel syndrome. Bladder pain may be treated as recurrent urinary tract infections. Pelvic pain may be attributed to stress, pelvic floor tension, ovarian cysts, fibroids, or adenomyosis.

Another reason it is missed is that imaging can be normal. A pelvic ultrasound is very helpful for evaluating ovaries, cysts, fibroids, adenomyosis, IUD position, and sometimes endometriomas or deeper disease, but a normal ultrasound does not rule out endometriosis. Small superficial implants may not show on imaging.

Historically, many patients were told that surgery was the only way to know if they had endometriosis. Laparoscopy can still be important, especially when symptoms are severe, imaging suggests deeper disease, fertility is a priority, or medical treatment is not helping. However, newer clinical guidance supports taking symptoms seriously and starting evaluation and treatment earlier, instead of waiting years for a surgical diagnosis.

How endometriosis is evaluated

A thoughtful endometriosis evaluation starts with a detailed conversation. Your provider may ask about your first period, cycle pattern, bleeding, pain timing, bowel and bladder symptoms, pain with sex, fertility goals, family history, prior treatments, and what symptoms are affecting your daily life.

Depending on your symptoms, the workup may include:

  • A pelvic exam, when appropriate and with comfort measures

  • Pregnancy testing, STI testing, urine testing, or vaginal testing if infection or pregnancy-related causes are possible

  • Bloodwork such as a CBC or ferritin if heavy bleeding or fatigue suggests anemia or low iron

  • Advanced gynecologic ultrasound to evaluate the uterus, ovaries, pelvic structures, fibroids, cysts, adenomyosis, and possible endometriomas

  • MRI in select cases, especially if deep infiltrating endometriosis is suspected

  • Discussion of medical management, pelvic floor therapy, or referral for surgical consultation when needed

The goal is not only to label the condition. The goal is to understand what may be contributing to your pain and create a plan that fits your symptoms, priorities, and future fertility goals.

Treatment options are individualized

There is no one-size-fits-all endometriosis plan. Treatment may include anti-inflammatory medications, hormonal suppression, continuous birth control pills, the vaginal ring or patch, progestin-only options, a hormonal IUD, injectable medications, GnRH medications, pelvic floor physical therapy, pain management strategies, nutrition and lifestyle support, or surgical referral.

If pregnancy is a current goal, treatment planning may look different because many hormone-based treatments prevent ovulation or pregnancy while they are being used. That is why fertility goals should be part of the conversation from the beginning.

When should you be evaluated?

You should consider an evaluation if your period pain makes you miss work, school, exercise, social plans, or normal daily activities; if you need to plan your life around your cycle; if pain is worsening over time; if you have pain with sex, bowel movements, or urination; if pelvic pain occurs outside your period; or if you are having trouble getting pregnant.

Seek urgent care for sudden severe pelvic pain, fainting, fever, heavy bleeding with dizziness, severe pain with a positive pregnancy test, or pain with persistent vomiting.

The bottom line

Endometriosis is common, complex, and too often dismissed. Painful periods should not be treated as a normal part of being a woman when they are disrupting your life. Evaluation matters because endometriosis is not the only cause of pelvic pain, and the right diagnosis can help guide the right treatment plan.

At Arcadia Women’s Wellness, we help patients understand painful periods, pelvic pain, abnormal bleeding, endometriosis, adenomyosis, fibroids, and other gynecologic concerns with a personalized and evidence-informed approach. You can schedule an appointment with Arcadia Women’s Wellness here.

Medical disclaimer: This article is for education only and does not replace individualized medical advice.


 

Sources:

Kristina Calligan
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