Endometriosis: disease of the inner matrix

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

Chronic pelvic pain.  Fatigue.  Digestive disorders.  Severe bloating.  Heavy bleeding.  Abdominal pain.  Back pain.  Depression.  Anxiety.  Infertility and subfertility.  Pregnancy loss.  More pain.

These are symptoms and consequences of endometriosis, a chronic and often debilitating disease affecting around 10% of cis-women and people born with ovaries and a uterus (and sometimes those without!*).  It is characterized by the presence of endometrium-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, in which uterine lining grows into the wall of the uterus itself.   To date, the only effective treatment for adenomyosis is hysterectomy, and it can only be definitively diagnosed with a biopsy, which is often done after the removal of the uterus.  Improved ultrasound techniques are becoming more effective at diagnosing endometriosis and its cousin adenomyosis, but there is still a long way to go in terms of non-surgical treatment.

I've experienced every one of the symptoms and complications listed above.  I was diagnosed with ureteral and bladder 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!  Stage also appears to be inversely correlated with the risk of miscarriage, i.e., miscarriages are more likely in those surgically treated for superficial disease than in those treated for severe disease or in those without endometriosis.  The risk of infertility (i.e., being unable to conceive at all after a year of consistently trying) increases with stage, however.

As a scientist, I am determined to see diagnostic tools and treatments for all this disease improve, as well as for the field of gynecology in general.  As a person living with this disease, I want to raise awareness so that people are diagnosed sooner and face fewer barriers to effective treatment.  As an activist, I push the boundaries on what is considered "polite conversation"-- none of us would exist without menstruation, vaginas, uteruses, and ovaries, and no one should feel ashamed to talk about what hurts.

Some of my favorite resources:

• Tommy's -- a UK charity that researches pregnancy complications and advocates for those who've suffered pregnancy loss.  Their miscarriage support tool is under development.

• 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.  A related documentary by the same director is Below the Belt.

• 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 symptom relief on certain hormonal medications (myself included).

• The Calla Campaign -- an interdisciplinary project by women at Duke University about a 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.

• 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 an endometrioma.

• Endo-App -- a German-language app developed by medical specialists for people with confirmed endometriosis.  The app helps you track symptoms and provides evidenced-based tips for combating them.