It can take an average of 5 years, and sometimes much longer, from the time you start speaking with healthcare professionals about your symptoms to when you get a diagnosis of endometriosis.
Endo symptoms can often be dismissed by family, friends and even medical professionals. Not feeling believed or understood by people who are supposed to care for us can be frustrating and hurtful. Unmanaged physical pain from endo can lead to mental health issues like isolation, anxiety, and depression – on top of already difficult emotions.
There are many factors contributing to the delay to diagnosis:
- It may be difficult for people with endometriosis to talk about pain during menstruation, because of taboos and stigma around talking about periods.
- Most people are not taught what a normal period is like, and what the common symptoms of endometriosis are. Some people may wait longer to seek medical help because of this.
- Awareness of endometriosis among primary care providers (for example family doctors and nurse practitioners) is low.
- Many people have their pain and symptoms dismissed by family, friends, and healthcare providers.
- There is no simple way to diagnose endometriosis.
How is endometriosis diagnosed?
There are several different ways that doctors can get information that will help them make a diagnosis of endometriosis. Your symptoms, your priorities, and your specific needs will help you decide with your doctor how to approach investigating your symptoms.
Here are some approaches that doctors could take:
History and physical examination
Your doctor will ask about your medical history, including your current and past symptoms, information about your menstrual cycles, any past pregnancies, use of birth control, and sexual history. With your consent, they will also perform a pelvic exam. During a pelvic exam, your doctor will look at your genital area on the outside of your body to see if you have anything that could be a cause for concern, like redness, irritation, swelling, or rashes. This exam usually involves an internal examination of your vagina, but you can decide whether you feel comfortable with this. If you have an internal exam, the doctor will usually put a metal device called a speculum inside your vagina to allow them to see inside better. They will also feel for your uterus, ovaries and surrounding tissues, using two fingers inside your vagina and the other hand on the outside of your pelvis and abdomen.
During a pelvic exam, your doctor may be able to feel signs of deep endometriosis. How well a pelvic exam can detect endometriosis depends on how much expertise and experience the doctor has in looking for signs of endometriosis. If you have endometriosis, a pelvic exam may cause pain that’s similar to what you feel with your endometriosis pain.
If the results of your pelvic exam are normal and show no signs of endometriosis, you could still have endometriosis.
Imaging
If your doctor suspects that you might have endometriosis, they will often refer you for an ultrasound scan of your pelvis. Your doctor may suggest:
Transabdominal scan
Where a device called a transducer moves around your pelvic area on the outside of your body to take images of the area; and/or
Transvaginal ultrasound
Where the transducer is placed inside the vagina to take images of the area.
There are different methods for doing ultrasounds of the pelvis.
- Basic ultrasound: Using this method, it is usually only possible to detect endometriosis on the ovary. Basic ultrasounds cannot detect superficial endometriosis, and they usually do not detect deep endometriosis.
- Advanced ultrasound: This method can also detect endometriomas, and sometimes deep endometriosis. It cannot detect superficial endometriosis. Advanced ultrasound requires specialized training and experience, and it is not available everywhere in Canada.
If your ultrasound detects signs of endometriosis, there is a very high chance that you have endometriosis. If you have normal ultrasound results, you could still have endometriosis. Your healthcare provider may want to do more tests to be sure of a diagnosis.
- Magnetic Resonance Imaging (MRI): This method is sometimes used when your doctor suspects you may have endometriosis and advanced ultrasound is not available. Endometriosis surgeons may also use MRI results to help with planning endometriosis surgeries. Doctors need special training to effectively use MRI to assist in the diagnosis of endometriosis. If your MRI results are normal, you could still have endometriosis.
Extrapelvic endometriosis may require different types of imaging depending on the location of the endometriosis
Surgery
Endometriosis can be diagnosed through laparoscopic surgery. This is a type of minimally invasive surgery where the surgeon makes incisions – small cuts – in the abdomen. The surgeon uses the incisions to insert a tiny camera and surgical instruments into the pelvis. The camera works like a magnifying glass, so that the surgeon can see the endometriosis more easily.
In the future, there may be new ways to diagnose endometriosis. For example, there may be biomarkers that can help doctors to diagnose endo. A biomarker is something you can measure with a test so that you can tell whether or not someone has a disease. For example, a biomarker test to help doctors diagnose endo could be done from a blood or saliva sample where the doctor looks for something specific in the sample, like a particular protein or DNA mutation. Biomarkers are now used as an aid in the diagnosis of many other diseases and may eventually be used for endometriosis as well.
