This work in progress is a documentation of lives lived with endometriosis.
The project began solely as a self portrait series, due to pain and limited mobility caused by the disease. Now focusing on others with endometriosis, the work so far includes Cori Smith, a transgender man, and Abby Norman.
I wanted to try to put into images what the reality of this disease can look like. For many it's crippling or labor like cramps during their period every month, for others it's near constant pain they have to push through every day. And for some it's months on end of being homebound, mostly immobile and in debilitating chronic pain.
Weeks and months fade into one another; pain meds blur the reality of existence, enough to sometimes forget that life is carrying on outside of these walls. Trying not to look out of windows or at photographs. Time slips by like a bad dream that you try to forget; briefly waking again into a body you don’t recognize and a life you can’t control, until it all happens again. The physical pain is heavy, grinding, constant. A weight that spreads from pelvis to legs, climbs your back and pushes against your diaphragm. It grits teeth and blurs your eyes. You retch and sweat. You feel as if you understand what it is to die.
Endometriosis is referred to as the 'invisible disease’; internal lesions pull, twist and scar our organs, leaving only our pain to show for it. The disease affects 1 in 10 people born with a uterus, yet it is still widely unknown and misunderstood; often believed to be nothing more than ‘painful periods’.
Tissue similar to the lining of the uterus grows throughout the body, usually in the pelvis or abdominal cavity. It bleeds and spreads, fusing together or completely damaging the reproductive system, parts of the bowel, bladder or more. It's treated with hormones, pain killers and surgeries.
The guidelines set for doctors on how to treat endometriosis across the U.S and U.K are outdated and dangerously incorrect. This has led to thousands waiting an average of seven to ten years for a diagnosis, before undergoing repeated ineffective surgeries and often the unnecessary removal of reproductive organs.
The ‘gold standard’ treatment for endometriosis is excision surgery, where each piece of disease is cut out. This surgery has vastly higher success rates than the standard operations performed for endometriosis, where the disease is burnt or lasered off, leaving much of the tissue behind, and creating further scarring.
Excision surgery is largely unheard of and unavailable on insurance plans in the U.S, or on the NHS in the UK.
With this project I want to make this disease visible. This is what it looks like. One in ten women and trans men have this, and we need to be seen.