Can endometriosis be diagnosed without surgery?

Endometriosis occurs when the type of tissue that forms the lining of the uterus is found outside the uterus in places such as the ovaries, fallopian tubes, bowels, and bladder. Some people describe it as feeling like barbed wire is wrapped around their insides, or as if they’re being prodded with a searing hot stick. Some don’t experience any pain at all, and learn they have endometriosis when the condition impacts fertility.  

With symptoms that so heavily impact women and those with uteruses physically and emotionally, why is diagnosing it not straight-forward? 

It takes 10 years on average for people to be diagnosed with endometriosis, and despite showing many symptoms of the condition for years, many hear along the way that they can only be diagnosed (and treated) by undergoing pelvic surgery.  

That’s not the full story, however. Let’s explore the true ins and outs of diagnosing and treating endometriosis. 

Why does it take so long to receive an endometriosis diagnosis?

Women are often left waiting in confusion and frustration for a very long time to get diagnosed with endometriosis. That’s because many of the symptoms—from pelvic pain and cramping to excessive bleeding and bloating—are mistaken as “normal” menstrual symptoms. [1]

“It’s all part of being a woman” and “You just have to live with it” is the common message many girls and women hear when it comes to painful periods. Many women absorb messages by healthcare professionals, their communities, and their families, that it is “normal” to be in so much pain before, during, and after their period. 

However, in an analysis of more than 1,000 teens who experienced that kind of pain around their period and underwent diagnostic surgery, 64 percent had endometriosis. [2]

The condition also goes undiagnosed because doctors often mistake endometriosis pelvic inflammatory disease (an infection in the pelvic organs) or irritable bowel syndrome, as endometriosis symptoms often overlap with other conditions. That’s why so many women aren’t diagnosed until they’re in their 30s or 40s. [3]

While it’s common for people with endometriosis to have symptoms, some do not, with it only becoming a major concern when it impacts fertility.

The take home message is that no matter how you spin it, it’s not just another painful period.

How is endometriosis most often diagnosed?

Diagnosing endometriosis tricky because endometriosis is not visible on most imaging tests, and there isn’t a blood test that can give even a slight indication that someone has it.   

The “gold-standard” for diagnosis is through laparoscopic surgery, which involves making a small cut near the belly button under general anesthesia to allow placement of a slender camera to see if there’s any tissue outside the uterus. The surgeon may take a biopsy if anything is found and clean out the tissue as best as possible. Often, the surgeon will be able to remove all visible disease. [4]

While surgery can reduce symptoms, using it as a first course of action to diagnose endometriosis isn’t ideal because it’s an invasive procedure. As with any surgery, there are risks to being put under general anesthesia, and it takes time to recover. Plus, it can be expensive depending on your provider and what type of insurance you have.

Can endometriosis be diagnosed without surgery?

Enabling the diagnosis of endometriosis without needing to undergo surgery is the goal of many researchers, healthcare professionals, and patient advocates. After all, making the diagnosis more accessible can lead to earlier treatment and avoiding pelvic surgery. 

Thankfully, there are circumstances in which doctors can diagnose most types of endometriosis —based on a clinical evaluation. This is called a “clinical diagnosis” and it involves looking at the following: [5]

• Symptoms (severity, timing, and location)
• Menstrual cycle characteristics
• Family history
• Physical examination
• Imagery (specific features that may show up such as nodules, masses, and fibroids)

While it’s possible to land on the diagnosis without surgery, the challenge lies in finding a doctor who has the very specific knowledge and experience to identify common endometriosis symptoms. 

After all, there are a broad range of symptoms with endometriosis that vary widely from person to person. For example, one person with endometriosis on the bowel may have pain while going to the bathroom while another person with endometriosis on the bladder may have bladder symptoms. Or, they may not have symptoms at all but still have endometriosis. 

Diagnostic surgery can also be avoided if someone has endometriosis on the ovaries (endometriomas) or “deep” endometriosis. Research has shown that these two types of endometriosis may show up on a transvaginal ultrasound (TVUS).‍

While transvaginal ultrasounds are far more accessible and less invasive than pelvic surgeries, they are still invasive and can be uncomfortable. If you experience pain with penetration, or are nervous about what a TVU entails, speak with your doctor about how to make sure the experience is as comfortable as possible.

While TVUS can aid in the diagnosis of endometriosis, they cannot detect ALL endometriosis: it is particularly bad at spotting "superficial" endometriosis. And, importantly, it must be performed by a skilled operator, and there are very few skilled operators who can actually detect even deep endometriosis. So, even if your ultrasound came out "clean," you could still have endometriosis.

Is surgery the only way to get relief from endometriosis symptoms?

With so much emphasis on surgery being the gold-standard for endometriosis treatment, it’s logical to think that you’ll need surgery anyway if you have endometriosis. How else would you get treatment? 

But, it’s important to note that endometriosis surgeries, also called “excision surgeries,” may have poor outcomes, and many people need more than one in their lifetime. While pain relief can be achieved, endometriosis recurs up to 20 percent at two years post op, and up to 50 percent at five years post op. 

Just like brain surgery isn’t recommended for headaches, excision surgery alone is rarely helpful in the long run for pain relief. Pain isn’t just something that can be “cut out.” That’s because 90 percent of people with pelvic pain have multiple causes of pain. [6]

Surgery can certainly alleviate symptom severity in some people, but it’s not a direct line to a cure.  Other courses of action may help reduce pelvic pain, such as: [7]

• Medication (prescription or over-the-counter)
• Pelvic floor physical therapy
• Nutrition (including plenty of protein, fruits, and vegetables) 
• Physical activity  
• Cognitive behavior therapy (has shown to reduce chronic pain) 

Ultimately, your decision to undergo surgery for endometriosis should be made with your doctor after weighing the risks and benefits, the severity of your symptoms, and your potential outcomes.   

Where to look for help with a diagnosis

Because diagnosing endometriosis can be complex, look for a doctor who specializes in the treatment of endometriosis, fibroids, and menstrual disorders if you suspect you have the condition.  

During your visit, discuss options for diagnosis, including whether a clinical diagnosis makes sense in your case. 

Consider writing down all your symptoms and how long they’ve lasted so you can give your doctor the full picture without forgetting anything. Let your doctor know details around any of the following:

• Painful periods, including cramping and lower back and abdominal pain
• Excessive bleeding or bleeding between periods
• Pain with sex
• Pain with bowel movements or urination
• Intense fatigue, diarrhea, constipation, bloating or nausea, especially during periods 

While getting an endometriosis diagnosis isn’t as simple as confirming a broken leg on an x-ray or high cholesterol on a blood test, it is possible to get an earlier diagnosis—by years—and subsequently, symptom relief much sooner. 

Remember, just because something is hidden doesn’t make your pain any less real or less manageable.