Endometriosis: disease of the inner matrix

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

Chronic pelvic pain.  Fatigue.  Constipation.  Diarrhea.  Severe bloating.  Heavy bleeding and anemia.  Irregular menstrual cycles.  Abdominal pain.  Deep low-back pain.  Depression.  Anxiety.  InfertilityPregnancy 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., the inability to conceive spontaneously during 12 months of regular intercourse) increases with stage, however.

In addition to endometriosis, I have polycystic ovarian syndrome and strongly suspected adenomyosis (both diagnosed thanks to improved ultrasound imaging).  In 2023 I was further diagnosed with an autoimmune rheumatic disease.  Although the connection is still not well understood and higher quality studies are lacking, it seems that endometriosis co-occurs with autoimmune diseases in general.  Not surprisingly, the combination of these diseases has severely affected my quality of life, mental health, and ability to conceive and carry to term.

As a scientist, I am determined to see diagnostic tools and treatments for all these diseases improve, as well as for the field of gynecology in general.  As a person living with these diseases, 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:

*Tangentially related: Beyond XX and XY: The Extraordinary Complexity of Sex Determination