Getting a diagnosis for endometriosis can take years—sometimes over 7 years!
Why?
Because diagnosing is pretty tricky and takes multiple steps (and, often, multiple practitioners).
Diagnostic testing
There aren't any blood tests that can tell us if someone has endometriosis. There are some biomarkers--i.e., blood markers-- that can point us in the right direction, but they're not super specific and can miss people with the disease.
The gold standard for diagnosis has been laparoscopy for a long time; laparoscopy is minimally invasive surgery that allows doctors to explore your insides. Oftentimes, excision surgery will happen at the same time.
The problem is that it’s not accessible to everyone, and many people face long wait times or barriers to getting the procedure. You need a referral from a family doctor in Canada to see a gynaecologist who will be able to do this.
Ultrasound has historically been limited in detecting endometriosis—unless someone has endometriomas (a type of ovarian cyst). However, this is changing. Advances in research and technology are improving ultrasound’s ability to detect and map out endometriosis, making it a more helpful tool. In Canada, the McMaster Endometriosis Clinic is leading the way in this area.
MRI can be useful for detecting deep infiltrating endometriosis, but it’s not as effective at spotting superficial lesions.
Other reasons for delays
Period pain is often normalized—by both patients and healthcare providers. Many people are told their symptoms are simply "bad periods". This can delay diagnosis and care. In all fairness, sometimes, we do want to give things a bit of time (especially in adolescence if periods are just getting started). We can give a provisional diagnosis to return to at a later point, this is what I do in my own practice--I'll write it down as a potential to explore down the line (and share it with the family unit so that they know what to look out for).
Referrals to gynecologists take time, and not all family doctors are familiar with the full spectrum of endometriosis symptoms.
Symptoms can vary widely. Some people have the classic signs and symptoms like:
That being said, endometriosis could be asymptomatic (as in, be present without any symptoms). Its signs and symptoms can show up in other parts of the body as well--it really depends on where the endometriosis tissue is present. For most people, the tissue is found in their pelvic cavity, near or around their reproductive organs; however, it can be present outside of the pelvic cavity even around the lungs or in other parts of the body!
Digestive symptoms and diagnoses can be part of the picture as well. People with endometriosis are three times more likely to be diagnosed with IBS, and once they have that label, doctors may not look deeper and miss a diagnosis of endometriosis.
As you can imagine, this makes diagnosis really challenging! You can read more about endometriosis here. Check out Endometriosis Network Canada as well--they have great resources and info on endometriosis.
If you're looking for one-on-one care for your endometriosis, reach out to me through the contact form. Management strategies aren't cookie-cutter solutions--they need to take into account what you're symptoms are, what your goals are, and which stage of life you're currently in.
