Comedian Eleanor Thom says her book on life with endometriosis is 'friend I never had'

Sheffield-born comedian Eleanor Thom has opened up about her experience of life with endometriosis in her debut book Private Parts. Laura Drysdale reports.

Comedian Eleanor Thom has written a book on life with endometriosis.  Photo: Sarah Thorniley Walker, sent by Eleanor.
Comedian Eleanor Thom has written a book on life with endometriosis. Photo: Sarah Thorniley Walker, sent by Eleanor.

Eleanor Thom is sitting in her kitchen with cushions stuffed behind her back and an overheated wheat bag held to her front, as she introduces readers to her debut book.

Many of its 350 pages were written with hot water bottles were pressed against her body, but some days, the pain proved too much to put pen to paper at all. She kept going though, focused on producing what she calls “the friend I didn’t have” - a part memoir come handbook and survival guide on life with endometriosis.

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“It’s the book I wish I had at 17,” she says. “I wish somebody had given me something that said it might be hard but I’ve got you, it’s going to be okay.”

Comedian Eleanor Thom has written a book on life with endometriosis. Photo: Sarah Thorniley Walker, sent by Eleanor.

She describes Private Parts as a funny, feminist memoir about living with a long term - she thinks chronic sounds too miserable - condition, from someone who has “tried everything and survived”.

“I didn’t talk about it for a very long time,” she says. “I think I didn’t want to be defined by it. I didn’t want to be victimised or for things to be misunderstood. I didn’t want there to be myths perpetuated behind my back, things like she has a bad sex life and she can’t have children, both of which are not the case for me and actually not the case for a lot of people.”

Difficult to talk

Dame Hilary Mantel is interviewed in the book. Photo: Dominic Lipinski/PA

Endometriosis affects around one in ten women - approximately 1.6 million people in the UK - meaning it is as prevalent as diabetes or asthma. It is a condition where tissue similar to the lining of the womb starts to grow in other places and can cause symptoms including pelvic pain, period pain, heavy periods, feeling sick, constipation or diarrhoea, and difficulty getting pregnant.

Sheffield-born comedian Eleanor was diagnosed at 17, but had symptoms, debilitating for days on end, from the age of 11. Now 34, she says she was put off from speaking out for years by the patronising views she feels are often directed towards ‘women’s problems’ and the thought of not being taken seriously.

“As a comedian, I didn’t want to be a female comic in a room where they thought I had women’s problems so I didn’t talk about it for a long time.

“I think it is very difficult to talk about because it’s about the most private parts of your body and your life - your sex life, your bowels, your periods - it’s very personal. So I think for many women it’s very difficult to talk about anyway or it’s seen as inappropriate to talk about. I think periods full stop are pretty taboo still.”

Medical experiences

Eleanor says her concerns were initially dismissed by medics and she was told, aged 12, there was nothing that could be done for “bad periods” and that they would settle down with time.

But during an outpatient check up six months after she was hospitalised for a week after collapsing twice during her A-level year, a female doctor said something wasn’t right. Exploratory surgery three months later revealed endometriosis in her abdominal wall.

Eleanor, who now lives in London, had an operation to remove the tissue and had similar procedures every 18 months or so in the years that followed, her last surgery being in 2016.

She now manages her symptoms with mild hormonal treatment and because of extreme and persistent pain in her lower back, stomach and into her legs, she takes strong painkillers daily. But the condition has affected her career in comedy.

After graduating from the University of Manchester with a BA in Film and Theatre, Eleanor toured the UK with Lady Garden, an award-winning all-female sketch group, appearing on television and radio and in several runs at Edinburgh Fringe.

In 2013, she wrote and performed character stand-up show I am Bev and, as an actor, she has appeared in the likes of Absolutely Fabulous, Live at the Electric and Drifters.

But in the past few years, she says her body has become “too unpredictable” to work as a comic on stage and she has instead turned her hand to writing for other comedians including Joe Lycett and Tom Allen.

Writing the book

In late 2017, she turned her attention to writing Private Parts. She had found jotting down notes about her experiences, medically and personally, with endometriosis had helped her to cope with her condition and whilst she had thought one day she may turn them into a live show, she was encouraged by a friend to collate them into a book.

“It kind of all poured out because I felt really strongly that I wanted to be as honest as possible,” she says.

It was like a form of therapy, the writing presenting her with an opportunity to “get hold of” her condition, whilst giving others an insight into her journey through anecdotal stories and providing an informative account of the condition and how it affects those living with it.

“I needed something that was more optimistic that was on the side of the women that have it. There’s some great medical books out there...but there didn’t seem to be anything that was about the day to day, that said to me ‘I know you’ve got this. I know it’s really hard and I’m not promising it will get better but I can help you to laugh and to find hope and ways of managing this’.”

The book had to be written in a way that was funny, she says, “not too depressing but not too flippant”. Her ability to find light relief in difficult situations, a trait she picked up from her father, BBC Radio Sheffield presenter Rony Robinson, shines through.

“It’s how I see the world. I do see funny things, especially when it’s dark, when people have died or I’m stuck in a hospital waiting room.

“There’s always something funny if you look around and it just gives you a bit of control and a bit of respite in a way. I can’t not see the world like that because I think I would sink if I didn’t...I can’t get through it without laughing.”

Support and empowerment

Eleanor hopes the book will empower and support women, giving them comfort when they’re struggling and helping them to feel like they are not alone.

It features exclusive interviews with fellow sufferers Dame Hilary Mantel, an award-winning author and playwright, BBC radio presenter Paulette Edwards and actor, writer and director Lena Dunham, who Eleanor says are inspiring examples of what can be achieved whilst living with the condition.

“We might not all write award winning plays and books and TV series but it’s demonstrating that endometriosis doesn’t stop your life and I think that’s hugely important.”

“What I’m trying to do in the book is say you are a whole person as well as having this disease,” she adds.

“I know it’s impossible to try and manage all the other stuff when the condition is flaring up but you have to try and see that you are more than this, because it will sink you if not. For people that have got it, I hope the book is the friend that I didn’t have throughout the journey.”

Her over-riding message is printed on the book’s wraparound cover: “You are so much more than the sum of your private parts.”

Private Parts: How to Really Live with Endometriosis was published yesterday.

The British Society for Gynaecological Endoscopy has a list of accredited endometriosis centres in the UK. To see the list, which includes centres in Yorkshire, visit bsge.org.uk/centre