Endometriosis: disease of the inner matrix

endos (inside) · metra (womb) · -osis (disease)

Chronic pelvic pain, fatigue, constipation, diarrhea, severe bloating, heavy bleeding, irregular menstrual cycles, abdominal pain, deep low-back pain, depression, infertility, and more pain.

These are symptoms and consequences of endometriosis, a chronic and often debilitating disease affecting 10-15% of people born with ovaries (and sometimes those without!). It is characterized by the presence of uterine-like tissue attached to other organs around the body, most often in the pelvic cavity, but it is sometimes found on/in the appendix, gallbladder, liver, kidneys, lungs, etc. It often leads to the formation of scar tissue, and when endometriosis penetrates the walls of organs (deep-infiltrating endometriosis), it can lead to a condition known as "frozen pelvis." A related condition is adenomyosis, which is even more difficult to diagnose and treat.

I was diagnosed with endometriosis in 2012 via laparoscopy, and again with stage 1 disease in 2020. Disease staging ranges from 1 to 4 and only indicates how widespread and infiltrative the physical disease is, with 1 being superficial and 4 being deeply infiltrative. Staging does not account for pain levels or quality of life. It is not uncommon that people with stage 1 experience intense pain, while some with stage 4 don't even know there is something wrong!

As a scientist, I am determined to see diagnostic tools and treatments for this disease improve. As a person living with this disease on a daily basis, I want to raise awareness so that people are diagnosed sooner and face fewer barriers to effective treatment.

Some of my favorite resources:

  • Endo What? -- a fantastic documentary that is revolutionizing the way people see gynecology.
  • Citizen Endo -- a data-driven project at Columbia University aiming to understand endometriosis via their own period-tracking app Phendo and machine learning.
  • Clue -- a scientifically grounded period-tracking app integrated with a sexual health knowledge-base.
  • The Calla Campaign -- an interdisciplinary project by women at Duke University about a new device that allows a person to view their own cervix plus artful perspectives on what it means to see inside one's own body.
  • S-Endo: a Swiss organization raising awareness in the French-speaking part of Switzerland.
  • Centrum pro léčbu endometriózy: the Center for Endometriosis Care at Podolí hospital in Prague. Dr. Drahoňovský and his team are leaders in the diagnosis and treatment of deep-infiltrating endometriosis, a severe form of endometriosis that presents in the walls of pelvic and abdominal organs.
  • Кабинет по Ендометриоза: Cabinet for Endometriosis at Nadezhda Hospital in Sofia, Bulgaria. The first (and, as far as I know, the only) center for endometriosis in Bulgaria.
  • "Endo" -- an autobiographical song by Jennie Skulander, lead singer of Devilskin, and her hospitalization due to endometriosis.