endometriosis advocate

Pink background with bold white text about people with endometriosis feeling understood and heard more than other patients, attributed to @eleanorthom.

Since the publication of her book PRIVATE PARTS Eleanor has dedicated herself to advocating for the Endometriosis community by increasing awareness and campaigning for better care and treatments.

Eleanor works with people across the field, building trusted partnerships with medical, research and patient groups, charities and other campaigners, with the aim of uniting experience and expertise leading to a better and clearer plan for the future.

Her goal is to help join up the bits of the puzzle and make real and lasting change to the outcomes for those living with the disease right now and for generations to come.

She has appeared on specialist panel talk and media interviews in the UK and internationally, spoken at conferences and events and written articles for various publications.

Black and white photo of a woman with shoulder-length hair, smiling, wearing a floral dress, with pink background and white text overlay saying "My name is Eleanor and I have endometriosis... let's talk about it!"

A purple-tinted portrait of Eleanor T with a quote about women with endometriosis, mentioning their strength and resourcefulness. The quote reads: "The women I know with endometriosis who turn up every day, hopeful and still trying are as far from failing as possible. In fact, they're the strongest, most resourceful people I know."

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WOMEN’S HEALTH AMBASSADOR & PANEL GUEST

Eleanor’s distinctive capacity to be funny, succinct and deeply knowledgeable about women’s health makes her an invaluable guest at events. Not only is Eleanor a woman living with severe Endometriosis/ Adenomyosis, but she’s also the author of a seminal book on the subject PRIVATE PARTS

Two women sit on stage during a discussion, each holding a microphone. One woman is wearing a pink hoodie and jeans, smiling, while the other is wearing a patterned blouse, listening attentively, an event at Sheffield book festival 'Off The Shelf'.

Her unique ability, with a background as a comedian, allows her to make difficult, confusing and, at times, very sad topics more accessible.

Whilst sharing a patient’s perspective with humour, she’s also informed and passionate about highlighting the urgent need for change and access to better treatments for the 200 million people living with Endometriosis worldwide.

Through personal experience and her advocacy work, Eleanor has cultivated an incredible network of specialists, campaigners, fellow sufferers, charities and those working at the cutting edge of research, surgery and treatment. This fundamental insight across the field makes her an excellent ambassador for the cause and a great addition to any line-up.

CONTACT

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Eleanor also works with brands and companies who produce tried & tested products.

To discuss future brand affiliations get in touch here

Two women sitting on stage at a panel discussion, holding microphones. The woman on the left has brown hair in a top knot, wearing a blue dress with intricate embroidery, and jewelry, speaking into a microphone. The woman on the right has short blonde hair, red glasses, wearing a colorful plaid dress, holding a microphone, and listening.

Close-up of Eleanor Thom speaking into a microphone, wearing headphones. Text overlays include BBC, Radio Sheffield, Eleanor Thom, and a quote: 'And that's because, for me, it is a progressive disease.'

Awareness is a key aspect of this work. Eleanor suffered with a disease she’d never even heard of for years. it took 7 years to be diagnosed.

* The average diagnosis time now is 8-10 years in the UK.
* It’s believed to affect 200 million women and those assigned * female at birth worldwide.
* If people don’t know about the disease, they can’t know the vast effects on the lives of those with it.
* Everyone needs to know the little we do know. if we’re working with the wrong information it’ll only PERPETUATE myths and, at worst, lead to wrong or damaging treatments.

Endometriosis affects 1 in 10. Chances are, you know someone with it- even if they don’t know themselves!

we NEED URGENT CHANGE, we need to….

End intolerable waiting times

Symptoms & disease can get more complex to manage & treat for both patient & doctor if left unchecked

Teach medical practitioners across the board

This is not rare (1in10) & it’s not just ‘bad periods’- it’s a full body, inflammatory disease

Increase awareness amongst younger population

If 1in10 don’t even RECOGNISE they have it - it delays treatment & is then more complex to manage

Increase funding for research

Into causes & effects with better treatments, diagnostic tools and, ideally one day, even a cure! A cohesive database of data for UK patients; showing treatments/outcomes/symptoms accessible to medics & researchers so we can map the disease & learn quicker

Create medical equity in treatment

Not based on postcode-lottery or private means to pay out of service. Genuine access to proper & consistent multi-disciplinary treatment

Interview w/ Caroline Criado Perez for Invisible Women Substack, 2024

Eleanor Thom & Director Shannon Cohn at Endometriosis Q&A, 2022

Guest piece on Endometriosis for Emma Barnett's Substack, 2024

'Below the Belt' Q&A @ NHS Chelsea & Westminster Hospital w/ Director Shannon Cohen, Emma Cox, Eleanor Thom, Pippa Vosper, Dr Anita Mitra, hosted by Dr Amer Raza, 2022

Cheltenham Literary Festival 'Literary Friction' Live podcast recording w/ fellow author Karen Havelin, 2019

OvaryActing Podcast with Capital FM's Katy Johnston (@Katyjjo), 2021. (Click to listen)

The Vagina Monopod, 2022 (Click to listen)

BBC'S Woman's Hour, 2019 (click to listen)

BBC Radio Interview, with Paulette Edwards, 2020

WOW Festival (Rotherham) W/ Jude Kelly CBE (@judekellystudio) and Karen Arthur (@menopausewhilstblack)

endometriosis advocate

WOMEN’S HEALTH AMBASSADOR & PANEL GUEST

Awareness is a key aspect of this work. Eleanor suffered with a disease she’d never even heard of for years. it took 7 years to be diagnosed.

* The average diagnosis time now is 8-10 years in the UK.

* It’s believed to affect 200 million women and those assigned * female at birth worldwide.

* If people don’t know about the disease, they can’t know the vast effects on the lives of those with it.

* Everyone needs to know the little we do know. if we’re working with the wrong information it’ll only PERPETUATE myths and, at worst, lead to wrong or damaging treatments.

Endometriosis affects 1 in 10. Chances are, you know someone with it- even if they don’t know themselves!

we NEED URGENT CHANGE, we need to….

eleanor thom