Shannon Cohn was 15 when her symptoms started. “I
remember every time I got my period having to lie down on
the bathroom floor, needing the coolness of those tiles on my
face. For two whole days this lasted and no amount of pain-
killers helped. I knew there had to be something wrong with
me because none of my friends had any of these symptoms.
Eventually I went to see the family doctor. Every time I went
she’d scratch her head and say, ‘Well, you obviously just have
a lower pain tolerance,’ and that the only thing I could do was
accept it was part of being a woman and suck it up.”
Amazingly Cohn was 29 before she finally came across the
word “endometriosis” — “And this was after going through
university, law school, you know, being out in the world,
meanwhile going to multiple specialists to find out why I had
all these migraines and chronic fatigue and gut issues.”
Endometriosis (en-doe-me-tree-O-sis). A chronic disease
where tissue similar to the kind that lies inside the uterus —
the endometrium — grows outside the uterus. It does
exactly what “normal” endometrial tissue does, which is
break down and bleed every month, but because there is no
way for it to flow out it gets trapped, forming cysts and scarOne in ten women
has endometriosis,
a life-changing
condition that leaves
its sufferers in huge
amounts of pain.
So why is so little
known about it?
Christa D’Souza
speaks to the
director of a powerful
new documentary
that aims to
make the world
finally take notice
Below the belt
tissue that can “glue” itself to other organs. Most commonly
it is found in the ovaries, fallopian tubes and the tissue
lining the pelvis. But it can also develop in the bowel (as it
did with Cohn), the lungs, the liver and even the brain.
“Coughing up blood when you have a period, for example,
that’s a sign,” Cohn warns.
Cohn, 46, a creamy, collegiate blonde wearing a dash of red
lipstick and spectacles for our Zoom call, is talking from her
sofa in Oxford, Mississippi. After training as a lawyer (she was
part of the legal team that prosecuted Enron) she turned her
hand, via New York University film school, to social-impact
documentaries. Six years ago Cohn directed Endo W hat?, a
film aiming to change the misinformation surrounding endo-
metriosis. Her new documentary, Below the Belt, follows four
patients on their quest to find answers to their debilitating
symptoms. It reveals the gender bias and misinformation in
healthcare systems across the world that means women with
endometriosis are effectively being silenced.
If there is a reason beyond the personal to make Below
the Belt — which boasts Hillary Clinton, Rosario Dawson,
the Democratic senator Elizabeth Warren and the late Trunk Archive/Marcus Ohlsson, BBC20 • The Sunday Times Style