The condition develops when endometrial tissue, which normally lines the inside of the uterus, starts to grow outside the uterus. While it usually affects the pelvic cavity and reproductive organs, in some cases it can reach other areas, including the rectum or bowel.
Throughout your menstrual cycle, endometrial tissue thickens and eventually breaks down so it can leave your body during menstruation. If you have endometriosis, the endometrial tissue growing outside your uterus can’t exit your body.
Other symptoms of endometriosis include:
- painful bowel movements or urination, particularly during your period
- painful intercourse
- heavy bleeding during periods
- bleeding between periods
- lower back and abdominal pain just before, during, or after your period
Here’s what you need to know about getting an endometriosis diagnosis and the available treatment options.
An ultrasound doesn’t provide enough information to make an endometriosis diagnosis. But it can help your doctor narrow down what might be causing your symptoms.
Ultrasounds use sound waves to produce pictures of the inside of your body. To do an ultrasound, your doctor will press a transducer (a wandlike instrument) against your abdomen to view your organs. They may also do a transvaginal ultrasound by inserting a transducer into your vagina.
The resulting images might help your doctor identify endometriomas, or “chocolate cysts.” These are cysts associated with endometriosis. Identifying them can help your doctor decide which other tests to use to help figure out what’s causing your symptoms.
Doctors don’t always use an ultrasound to check for endometriosis. But when they do, it’s usually done alongside other methods and tests.
A pelvic exam can help your doctor feel for anything unusual in your pelvis. During the exam, your doctor will use their hand to feel the area inside and outside your uterus. They’ll check for any cysts or scar tissue that may point to endometriosis or help rule out other causes of your symptoms.
MRI scans are another type of imaging technique that can help diagnose endometriosis. In this diagnostic test, a magnetic field and radio waves produce detailed images of your organs and other tissues inside your body. This can help provide a clearer view of whether your endometrial tissue is growing outside your uterus.
Laparoscopy is the only reliable method for diagnosing endometriosis. It’s a minor surgical procedure that allows your doctor to actually view the inside of your abdomen and to collect samples of tissue. These samples can be tested to confirm an endometriosis diagnosis.
You’ll be given general anesthesia before a surgeon makes a small cut near your belly button. They’ll insert a laparoscope through the incision. A laparoscope is a small instrument with a camera at the end. Next, your surgeon will use the camera to look for signs of endometrial tissue outside of your uterus. They may also take a small tissue sample for additional testing.
Other small incisions may be made nearby to allow additional surgical instruments to be used in the procedure.
In some cases, your surgeon may remove the extra tissue during this process to avoid future surgeries.
For some people, getting an endometriosis diagnosis is a lengthy process involving several misdiagnoses along the way.
A 2012 study looked at 171 people from Germany and Austria who’d received endometriosis diagnoses. It found that the average time between the start of symptoms and getting a diagnosis was 10.4 years. And 74 percent of the participants had received at least one false diagnosis.
The time it takes to diagnose endometriosis has improved somewhat in the United States. A 2016 survey found that the mean time from onset of symptoms to diagnosis was 4.4 years.
It’s not clear why getting an endometriosis diagnosis often takes so long. But some people with endometriosis recall having their symptoms downplayed by doctors and chalked to being nothing more than a “bad period.”
For others, their symptoms may be vague or similar to those of other conditions, including:
As more people become aware of endometriosis and its symptoms, getting a proper diagnosis is getting a bit easier.
Still, there are a few things you can do leading up to your appointment to help ensure you get a timely, accurate diagnosis:
- Take an endometriosis self-test. The Center for Young Women’s Health offers an online test that you can take here. Print out your results or save them on your phone so you can show them to your doctor during your appointment.
- Track your symptoms. It sounds tedious, but keeping detailed notes about your symptoms can go a long way in getting an accurate diagnosis. Note on a scale of 1 to 10 the severity of your symptoms and any information about when in your cycle your symptoms tend to occur. You can do this in a notebook or use a period-tracking app. If you decide to use an app, look for one that allows you to track specific symptoms. Clue is a good, free option for this.
- Find an endometriosis specialist. Consider asking your doctor for a referral to a gynecologist who specializes in endometriosis. You can also check online support groups, like MyEndometriosisTeam, for doctor recommendations and other tips.
Once you’ve received your endometriosis diagnosis, you may need to try a few different treatments to find one that works best for you.
There’s no cure for endometriosis yet, and surgery remains the only way to remove endometrial tissue. Before recommending surgery, your doctor will likely have you try a range of nonsurgical treatments to help manage your symptoms.
- birth control pills
- birth control shot (Depo-Provera)
- hormonal intrauterine devices (IUDs)
- gonadotropin-releasing hormone (Gn-RH) therapy
- aromatase inhibitors
- pain medication, such as nonsteroidal anti-inflammatory drugs or acetaminophen (Tylenol)
- fertility treatments if you’re trying to get pregnant
But if nothing seems to be working, your doctor may suggest surgery to remove displaced endometrial tissue and scar tissue. This can usually be done laparoscopically, which is less invasive than open surgery.
Surgery may relieve your symptoms and make it easier for you to get pregnant, but endometriosis and your symptoms can return.
The path to an endometriosis diagnosis can be drawn out and frustrating for some. If you think you might have endometriosis, start by keeping a detailed log of your symptoms that you can show your doctor.
If you feel like your doctor is minimizing your symptoms or not taking your concerns seriously, don’t feel uncomfortable about finding another doctor. Your health is worth it.