Orrin Hatch, the Mormon former Repub-
lican senator, as executive producers — it is
to actually change policy. Having literally
heard thousands of testimonies from fellow
sufferers over the years, Cohn sure has
some horror stories. She cites the example
of the London-based photographer and
film-maker Georgie Wileman, who photo-
graphed her own scarred stomach for the
film’s campaign and whose repeat surgeries
have not just given her PTSD and chronic
panic disorder, but made her permanently
wheelchair-bound. She tells too of the
Kenyan radio and TV presenter Jahmby Koikai, whose stage
four endometriosis caused tissue to proliferate on her lungs,
appendix and heart, bleeding every time she got her period,
before being properly diagnosed. There is also the “particu-
larly egregious” case of the endometriosis campaigner and
blogger Aubrion Rogers, who died in January at the age of
30 due to complications from excision surgery, after years of
begging for help.
“But you know while researching the film we came across
this study that revealed when both sexes go into ER with
abdominal pain, women wait an average of 65 minutes to
get pain medication whereas men wait 49 minutes. Women
are also more likely to be treated first with sedatives. I have
been in the ER with pain so bad I’m about to faint, all but
stifling the screams and yet forcing myself to [she goes
down an octave] ‘Speak. Like. This.’ Because I know if I show
too much emotion I will be discounted in some way.”
According to the latest stats, one in ten women of repro-
ductive age in the UK suffers from endometriosis, a propor-
tion that is matched around the globe — that’s 176 million
worldwide. Meanwhile the existence of endometriosis in
women with infertility could be between 30 and 50 per
cent. It won’t necessarily cause infertility, however because
of the way lesions and cysts can distort pelvic anatomy, scar
fallopian tubes, change the hormonal environment of the
eggs and impair implantation of a pregnancy, it can severely
alter your chances of getting pregnant.
And due to its confusing array of symptoms (and let’s face
it, the second place women’s health issues often take) it
frequently takes years to diagnose. In an all-party parliamen-
tary group study involving more than 10,000 sufferers
(commissioned in 2020 by Sir David Amess, the Southend
West MP who was murdered in 2021), it was found that the
average time it took to be diagnosed with endometriosis
was eight years. Prior to getting that
diagnosis, a whopping 58 per cent had
visited their GP more than 10 times and
53 per cent had been admitted to A&E.
In many cases the first line of treatment
— anti-inflammatory drugs — is not
enough. In the case of invasive treatments
such as a hysterectomy the disease can
come back. The gold standard, which Cohn
herself finally had in 2006, is laparoscopic
excision surgery (during which surgeons
remove tissues and growth), but even with
that symptoms can return. Though Cohn
was thrilled to become pregnant with her first daughter three
months after the surgery, the symptoms returned immedi-
ately after she stopped breastfeeding her second daughter.
Since being fitted with an intrauterine device by her doctor
she has been, touch wood, symptom-free. “But I don’t think
it cured me by any means. And the damage it wreaked in my
body, being there undiagnosed for so many years, has defi-
nitely compromised my immune system.”
One thing is for sure, as I found out while trawling through
Google, is that Cohn is not alone in her quest. There’s an
army of “endo warriors” out there, a huge movement of
misdiagnosed sufferers demanding to be heard. Helping the
cause are celebrity advocates such as Alexa Chung, Chrissy
Teigen, Lena Dunham and Amy Schumer, who have all
posted pictures of themselves while undergoing treatment
for it, while a central character in Sally Rooney’s novel
Conversations with Friends, currently on television, suffers
from the condition. There’s also the former Nuts magazine
model Carla Cressy, who had part of her bowel removed after
developing a rare condition called frozen pelvic disease and
now posts pictures of herself in her bikini proudly displaying
her ileostomy bag. She has even given it a name: Paloma.
Cohn is a great advocate. Hard-hitting but considered,
with real skin in the game. Especially when it comes to her
daughters. “There’s a one-in-seven chance it can be passed
on, so I am always watching the 14-year-old like a hawk.” Her
husband and co-producer, Patricio, from Argentina, who
she met 17 years ago in South Africa after working with
Liberian refugees in West Africa, is an ardent supporter of
the cause, hellbent on raising awareness of the disease
among health legislators in his native country. Indeed, in
March he travelled to Buenos Aires to be part of the team
introducing a bill that seeks recognition of endometriosis as
a chronic disease, advocating for treatment to be coveredFrom left Shannon Cohn; Joe Alwyn and Alison Oliver, whose character has endometriosis, in Conversations with Friends‘The doctor said
the only thing
I could do was
accept it was
part of being
a woman and
suck it up’
The Sunday Times Style • 21