Many people with endometriosis spend years trying to get a diagnosis. The wait for answers can feel endless — even in places with advanced healthcare and modern tests, getting a diagnosis can take far too long.

Why is it often such a slow process? The signs and symptoms of endometriosis — like pelvic pain, painful periods, or bowel problems — often look like other health issues. Sometimes, people are told their pain is normal and nothing to worry about. These delays can add up to years of frustration, missed treatment, and a lower quality of life.

Why Does Endometriosis Misdiagnosis Happen?

Even when endometriosis is suspected, it’s not always easy to get the correct diagnosis right away. Doctors face several challenges. One is that the symptoms of endometriosis are different in everyone. Some people have severe pelvic pain and heavy bleeding, while others may only notice mild cramps. A few may have no symptoms at all until surgery for something else uncovers the condition.

Endometriosis can affect the uterus, ovaries, fallopian tubes, bladder, bowel, and even nerves. Because of this, pain may seem like it’s coming from the digestive tract, urinary system, or muscles.

One of the biggest hurdles is that getting a diagnosis requires a type of surgery called laparoscopy. In this procedure, the doctor makes a small cut in the belly and inserts a thin camera to look inside. Then, a biopsy (tissue sample) is taken and examined under a microscope. A laparoscopy with biopsy is the gold standard for diagnosing endometriosis.

Another factor that adds to delays is that dysmenorrhea (painful menstrual periods) and endometriosis symptoms heavily overlap. This can make it harder for doctors to know when period pain is something more.

Making a Diagnosis for Endometriosis

Because endometriosis can look like many other conditions, doctors use a process called differential diagnosis. This means they compare your symptoms with other possible causes to find the most likely explanation. Common conditions that may be mistaken for endometriosis include:

• Irritable bowel syndrome (IBS) or constipation
• Urinary tract disorders or long-term urinary inflammation
• Fibroids or ovarian cysts
• Fibromyalgia and other chronic pain conditions
• Adenomyosis (when endometrial tissue grows into the muscle wall of the uterus)
• Dysmenorrhea

It’s common to have one or more of these conditions along with endometriosis, which can make diagnosis even harder.

How Diagnosing Endometriosis Usually Begins

The process of getting an endometriosis diagnosis will begin with a visit to your healthcare provider or gynecologist (a women’s health and reproductive medicine specialist). They’ll first ask about your medical history. Be prepared for questions about your endometriosis pain, including when it started, how severe it is, and how it affects your quality of life. The doctor may ask about your family history because risk factors include having close relatives with the condition.

Then, a physical examination, including a pelvic exam, is done. The doctor will insert one or two fingers into the vagina to check for lumps, nodules, or painful areas. They may check the uterus, ovaries, or uterosacral ligaments (strong bands of tissue in the pelvis) for tenderness or scarring. If you have bowel symptoms, a rectal exam may also be performed.

Imaging Tests

Today, doctors often use imaging before surgery. These tools can’t always confirm the disease, but they can help. Imaging tests for diagnosing endometriosis may include:

• Transvaginal ultrasound (TVUS) — This is now considered the first-line imaging test. A small probe is placed in the vagina to take pictures of the uterus, ovaries, and other pelvic structures. TVUS can detect endometriomas (ovarian cysts) and, sometimes, signs of deep endometriosis or adhesions.
• MRI — An MRI may help when an ultrasound is unclear, especially if endometriosis might involve the bowel, bladder, or ureter (the tube that connects the kidneys to the bladder). It can also help doctors plan surgery. However, how useful it is compared with an ultrasound depends on the quality of the scan and how it’s interpreted.

Laparoscopy

Even with better imaging tests, laparoscopy is still the only way to confirm endometriosis. This procedure allows doctors to see the disease directly inside the pelvis and check for lesions (abnormal growths), adhesions, and endometriomas.

During a laparoscopy, doctors often do more than look for endometriosis. If they find suspicious tissue, they may remove it or burn it away. This can both confirm the diagnosis and provide pain relief. In some cases, removing the tissue can also help protect fertility by clearing scar tissue around the ovaries or fallopian tubes.

Laparoscopy can also help doctors “map” or stage how severe the condition is. They may find small implants (nodules or lesions) on the uterus, on the ovaries, or in the abdominal cavity. This information helps doctors decide the next steps for treatment, such as hormone therapy or more surgery.

Most laparoscopies are done under general anesthesia, meaning you’re asleep and won’t feel pain. The surgery usually takes one to two hours. Most people can return home the same day. Some bloating and tiredness after the procedure are normal, and most people can return to their usual activities after about two weeks.

Criteria for Diagnosing Endometriosis

The most reliable criteria for confirming a diagnosis of endometriosis include:

• Lesions or implants of endometrial-like tissue outside of the uterus, often on the ovaries, fallopian tubes, or uterosacral ligaments
• Adhesions that stick organs together in unusual ways
• Endometriomas
• Biopsy results where tissue samples show glands and stroma (support cells) that normally belong inside the uterus

Average Age at Diagnosis

Endometriosis most often affects people during their reproductive years, with the highest rates found between ages 25 and 35. However, symptoms may begin as early as the teen years.

One large study in the United Kingdom found that, on average, people waited about nine years for a diagnosis. In a UK survey, 47 percent of people visited their doctor at least 10 times before being diagnosed with endometriosis. A more recent study in the United States reported an average time to diagnosis of about 4.4 years, but this varies by location and other factors.

Why Diagnosis Matters and What Happens After

Getting an endometriosis diagnosis is more than just putting a name to your pain. It opens the door to treatment, support, and a better quality of life. Without a clear diagnosis, many people spend years trying medications that don’t work or being told their pain is “normal.” Once endometriosis is confirmed, you and your healthcare team can focus on the right treatment options for you.

Diagnosis also helps guide future planning. Some people may want treatment that prioritizes protecting fertility, while others want the best possible pain relief. Treatment options may include:

• Hormone therapy, such as birth control pills, injections, implants, or intrauterine devices
• Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or naproxen
• Laparoscopic surgery, which may be needed more than once

A hysterectomy (removal of the uterus) is sometimes considered when other treatments haven’t helped. If the ovaries are also removed during a hysterectomy, it causes early menopause, which may reduce pain but bring other health risks to people of reproductive age. Talk with your doctor about the risks and benefits of having ovaries removed before arriving at a shared decision about the type of surgery that would best treat your symptoms. Today, doctors usually think of hysterectomy as a last-resort option for endometriosis management, and it doesn’t always resolve symptoms.

How To Advocate for Yourself

Even if you’ve felt dismissed by your doctors in the past, you have the right to be heard. Keep track of your symptoms, menstrual cycle, and how pain affects your daily life. Bring these notes to your appointments and don’t be afraid to ask questions or request referrals to specialists. If something doesn’t feel right, seek a second opinion.

Advocating for yourself helps ensure you get the care you deserve. With growing research, better imaging, and more awareness, the path to diagnosis is improving.

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On MyEndometriosisTeam, people share their experiences with endometriosis, get advice, and find support from others who understand.

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