One in 10 people live with endometriosis, that’s roughly 136 million menstruators worldwide¹-² . Yet on average it takes seven to 10 years to receive a diagnosis³. The under diagnosis of endometriosis has multiple factors, the first of which is often that many people aren’t aware of what it is.
So, What is Endometriosis?
Endometriosis is a gynecological condition where tissue similar to the lining of the uterus (the endometrium) grows outside of the uterus. The tissue can grow anywhere in the body but is most commonly found on the ovaries, fallopian tubes, outer surface of the uterus, and around the lower abdomen.
How do hormones impact endometriosis
The growths of tissue act similarly to our uterus during the menstrual cycle and responds to hormonal changes. This means those regions also build up and shed during a period, which causes inflammation, bleeding within the abdominal region (or wherever the growths are), and can result in scarring.
What are the four stages of endometriosis
There are four stages of endometriosis: minimal, mild, moderate, and severe. The stage is determined by the extent of tissue growth spread, adhesions, and blockage/effect on the reproductive structures. This is why endometriosis is formally diagnosed with surgery. It is, however, important to note that the stage is not synonymous with the intensity of symptoms experienced. Someone with stage 1 endometriosis may be in great amounts of pain, while someone with stage 3 may be asymptomatic.
What are the causes of endometriosis
While many theories exist as to what causes endometriosis, ultimately it remains unknown. It appears there may be genetic predisposing factors and links to the condition, but there isn’t sufficient research completed yet to confirm this.
What are the Symptoms of Endometriosis?
Endometriosis can show up differently for each individual person and depends where their growths are located. Symptoms may be present throughout the entire menstrual cycle, or they may pop up cyclically during certain phases.
Some common symptoms are:
Excessive pain/cramps that are debilitating
Bloating/swelling of the abdomen (also known as “endo belly”)
Heavy/abnormal menstrual bleeding
Digestive issues such as constipation, diarrhea, nausea, painful bowel movements/urination
Pain with/after sex
Fertility struggles
How is Endometriosis Diagnosed?
A key element as to why endometriosis takes so long to get diagnosed is the difficult diagnosis process. There isn’t an easy, non-invasive test to take, unfortunately. There’s actually no concrete way to formally diagnose endo unless laparoscopic surgery is performed to find the lesions/growths.
Some physicians will treat endometriosis based on physical symptoms, and then get a better look at how advanced it is to see if surgical removal of lesions is in the treatment plan. However, bad period-pain complaints are often written off as “normal” by doctors. This results in having to consult multiple physicians before being diagnosed.
If you and your doctor think endometriosis may be present, here are a few things that may occur in the diagnostic process:
An internal pelvic exam: Similar to a PAP exam, a doctor may look inside the vagina and at the cervix to see if any lesions or cysts are present. Endometriosis doesn’t always show up in this way, but in some cases, a pelvic exam will catch signs of it.
A pelvic ultrasound: An abdominal ultrasound (wand on your belly) or transvaginal ultrasound (wand inserted into the vagina against the cervix) may be done to check for any ovarian cysts as a result of endometriosis.
Laparoscopy: A minimally invasive surgery is often performed to put a scope into the pelvic area to check for any endometrial growths. Sometimes seeing the growths is enough for diagnosis, other times a small tissue sample is taken for the lab to confirm endometriosis. This is the only way to formally diagnose endometriosis as they can see the lesions to determine the stage.
Treatment of Endometriosis
While there is no cure for endometriosis, treatment can provide relief and help prevent further spread of the growths. Some common endometriosis treatments that a doctor may recommend are:
Medication: NSAIDs are often prescribed to manage the inflammation and pain associated with endometriosis. Birth control may be recommended as well to manage the hormones that contribute to growths. Some doctors may even recommend gonadotropin-releasing hormone agonist (GnRH), which puts the body in a state similar to early menopause.
Surgical Approaches: In addition to its use as a diagnostic tool for endometriosis, laparoscopic surgery is also used as a treatment. In a laparoscopy, a small incision is made, and a thin tube is inserted with a camera and light to see where the growths are, and remove small growths. If the endometriosis appears to be at a later stage, it may be treated with a laparotomy, a more extensive surgery to remove as much of the endometriosis as possible. In some cases, those with endometriosis opt for a hysterectomy to remove the uterus/ovaries if it is far spread and very disruptive to their life.
Pharmaceutical and surgical management are the scientifically proven treatment methods for managing endometriosis but many people find help through working with nutritionists, naturopaths and other complementary modalities as well.
If you suspect that you may have endometriosis, book an appointment to talk to your primary health care practitioner to discuss the next steps. Nobody should have to suffer through debilitating periods—help is out there.
Resources
Adamson, G., Kennedy, S., & Hummelshoj, L. (2018, January 23). Creating Solutions in Endometriosis: Global Collaboration through the World Endometriosis Research Foundation - G. David Adamson, Stephen Kennedy, Lone Hummelshoj, 2010.
Rogers, P., D.Hooghe, T., Fazleabas, A., Gargett,, C., Giudice, L., Montgomery, G., . . . Zondervan, K. (2009, February 5). Priorities for endometriosis research: Recommendations from an international consensus workshop.
Arruda, M., Petta, C., Abrão, M., & Benetti‐Pinto, C. (2003, April 01). Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women.
About the Author
Victoria Alexander (she/they) is the face behind The Elephant in the Womb, a space centred around reproductive health education and menstruality. Victoria strives to further stand up for inclusive menstrual equity and actively works with local government to achieve LGBTQ+ centred period and pregnancy care options. Read Victoria's full bio here.