Endometriosis is a condition when tissue similar to the lining of the uterus (womb) grows outside the uterus, such as in the bowels, bladder, and pelvic area.
The most common symptoms of endometriosis are severe and painful cramps, pelvic pain, and irregular periods. Other symptoms may include pain during a bowel movement or urination, back pain, diarrhea, constipation, and chronic fatigue. People with endometriosis may also have trouble with infertility.
Because endometriosis mimics the symptoms of other health conditions and has limited tests for diagnosis, endometriosis can be easily misdiagnosed.
Many different health conditions can mimic symptoms of endometriosis. These conditions include other gynecological disorders as well as conditions that affect other organs of the pelvis.
- Pelvic inflammatory disease (PID): PID is a painful condition that can develop if your uterus, fallopian tubes, or ovaries develop an infection. The most common cause of infection is sexually transmitted infections like gonorrhea and chlamydia. Like endometriosis, PID can cause pelvic pain, pain during sex, irregular periods, and infertility.
- Irritable bowel syndrome (IBS): IBS is a common condition that affects the intestines. Endometriosis can be mistaken for IBS because IBS can cause symptoms like diarrhea, constipation, and abdominal pain.
- Ovarian cysts: These are fluid-filled sacs that can form on your ovaries. Like endometriosis, ovarian cysts can cause symptoms such as infertility, pain in your lower abdomen, irregular periods, and changes in the flow of your period.
- Adenomyosis: This can be easily confused with endometriosis. Instead of endometrial tissue that grows outside the uterus, people with adenomyosis have endometrial tissue that grows into the muscular wall of the uterus. Symptoms of adenomyosis are similar to endometriosis and include heavy and painful periods, infertility, and painful sex.
- Uterine fibroids: These are similar to endometriosis. Uterine fibroids are noncancerous growths that develop around the wall of the uterus. Most people with uterine fibroids don’t experience symptoms. If they do have symptoms, they may have heavy and painful periods, pain during sex, and frequent urination—all symptoms of endometriosis, too.
- Interstitial cystitis: Also known as painful bladder syndrome, this is a condition that can cause lower abdominal pain and changes in how often you feel like you need to urinate. People with endometriosis that affects the bladder may also experience these symptoms.
- Myofascial pain: This is pain around the fascia (connective tissue) around your muscles and other areas of your body. You may experience pelvic pain, especially around your pelvic floor muscles.
About 75% of people with endometriosis say they were misdiagnosed with another condition at some point in their diagnostic journey. On average, it takes about 10 years for someone to get a correct diagnosis of endometriosis.
Factors that lead to misdiagnosis or diagnostic delays include:
- Considering gynecological pain normal
- Feeling stigma or embarrassment over your symptoms and so delaying care
- Having a lower stage of endometriosis
- Having endometriosis in various locations outside your uterus
- Experiencing pain in different areas
- Having certain symptoms, such as headache, fatigue, and urinary issues
- Having a healthcare provider who is not fully educated on endometriosis
How endometriosis is diagnosed also makes diagnosis challenging. It cannot be diagnosed based on symptoms alone—many other health conditions can cause similar symptoms. Additionally, no blood test is available for endometriosis. The only definitive test for endometriosis is surgical, which can be more invasive and costly than diagnostic tests for many other conditions.
Endometriosis is usually diagnosed by a gynecologist, a healthcare provider specializing in the female reproductive system.
Your gynecologist will review your symptoms and medical history and perform a pelvic exam. They may perform or order the standard diagnostic tests if they think you have endometriosis. This is part of a process called differential diagnosis—when your symptoms match more than one condition, and they have to run different tests to rule out other conditions.
Laparoscopy
The only way to confirm an endometriosis diagnosis is to directly examine the endometrial tissue that has grown outside the uterus. Healthcare providers do this with a laparoscopy. Laparoscopies are usually performed by a general surgeon, gynecologist, or gastroenterological surgeon (a surgeon who specializes in the digestive system).
During a laparoscopy, a surgeon will make a small cut near your belly button and insert a camera to look inside your pelvis. If they see any growths, they will take a sample (biopsy) to test whether the growth is endometriosis.
Imaging
Before getting to the surgical stage of the diagnostic process, healthcare providers will likely first perform imaging. Imaging is less invasive and typically less expensive than a laparoscopy, so they will do this to determine if a laparoscopy is needed.
A vaginal ultrasound is the most popular imaging technique when diagnosing endometriosis. A tool is inserted into your vagina so that images can be made of your pelvic organs. Depending on your symptoms, they may also perform an ultrasound through your rectum.
Depending on the location of your pain, they may also suggest a magnetic resonance imaging (MRI) test. An MRI may be helpful when the provider thinks you may have deep infiltrating endometriosis (DIE), when the tissue has grown deep into the organs.
Sometimes, you may want to get the opinion of a healthcare provider different from the provider you’re currently seeing. Doing this may confirm or question the first provider’s diagnosis.
If you’ve been experiencing symptoms of endometriosis and have not been able to manage them with different treatments, you may want to consider getting a second opinion.
If the second opinion is different from that of your first provider, you can either go back to your first provider and talk to them about the second opinion or find a third provider.
Endometriosis is a condition where tissue similar to the lining of the uterus grows outside of the uterus. It can cause severe pain, irregular periods, digestive issues, and infertility.
Diagnosing endometriosis is challenging. This is in large part due to symptom overlap with other conditions like IBS, ovarian cysts, and pelvic inflammatory disease. Because of this symptom overlap, endometriosis is commonly misdiagnosed for years.
What also makes diagnosis challenging is the fact there is no simple test for endometriosis. Laparoscopy, a type of surgery, is the only definitive diagnostic method.
