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:

  • Pain Science -- a comprehensive website about pain in all its forms, especially central sensitization, which often accompanies chronic gynecological disease.
  • 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.
  • Nancy's Nook -- a comprehensive website born out of the eponymous Facebook group. My own personal word of caution: they advocate excision surgery above all other treatments, and are notably biased against using oral contraceptives for symptom management, despite many studies indicating that not all people benefit from surgery, while many people do experience tremendous pain relief on certain hormonal medications (myself included).
  • 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.