Let’s talk about it

Endometriosis isn’t just a medical experience - it’s also social and political. Having endometriosis can be isolating: from the medical gaslighting, to the cancelled hang outs, to lack of public awareness.

Why the silence? 

Many patients turn to support groups and social media to find connection, community and understanding. Tips for where to shop for clothes that can handle bloating, the best recipes for when you’re exhausted post surgery or even just an opportunity where you can get angry or sad with someone who gets it - resources such as these can give you support the medical sector can’t. But beware of misinformation on social media and make sure to fact check with trusted sources.

Family and loved ones

Unfortunately, stigma often comes directly from our families and loved ones. Being accused of whining, exaggerating pain symptoms, or lying as a way to get out of sex can be doubly harmful when it comes from someone important to you. 

As there is a genetic component to endometriosis, many people have a close relative who also has it. Sometimes it is helpful to have someone share your experience. Sometimes it means extreme pain is considered normal in your family, meaning your experiences are more likely to be dismissed. 

This is why widespread awareness of the severity of endometriosis is so important.

Out in public

Leaving the house can sometimes feel impossible when you have endometriosis. And then when you do, it only gets harder. 

From employer discrimination after taking sick leave, to missing school days and exams, to people ignoring you when you ask for a seat on the bus, it can feel like no one is on your side. Of people with endometriosis who applied for disability support, 92% said the process had been difficult or very difficult.

 Reducing stigma is essential for survival in this society so that people with invisible disabilities aren’t put at a disadvantage.

Tools for navigating the public sphere

The social model of disability is a framework for describing disability as something created by society.

In the medical model, disability is internal - it is a result of the way your body works. But in the social model it is external - people are disabled because society has barriers. Would a person who uses a wheelchair be disabled if every space in the world had lifts and ramps and was made accessible?

Until we can live in a completely accessible world, disabled people have a variety of tools available they can use to make things somewhat easier. 

How else could we make the world easier to live in for people with endometriosis?

Does it ever go away?

It’s unclear whether endometriosis stays stable, gets worse or gets better over time. For many people, symptoms lessen with age, during pregnancy, and after the menopause. But this is not the case for everyone.

It’s not just women who get endometriosis

Though endometriosis is often described as a “woman’s disease”, it’s not just women who get it. Anyone with a uterus can have it, and even people without one.

Endometriosis in trans men, non-binary people, gender diverse people and intersex people is often doubly painful - not only do they have the same problems as cis endosex women experiencing symptoms and accessing care, but it often comes wrapped up in transphobia and intersexphobia.

 It can be difficult for some cis women to admit this experience isn’t unique to them. Pain is historically so strongly associated with womanhood. But that's a patriarchal construct - one we should be rejecting. We must work together to build a world where women don't have to feel so much pain.

Andy Shaham started experiencing extreme period pain at age 11, and couldn’t understand why everyone else could handle their periods so well when he couldn’t even get out of bed. At age 16, he got his endometriosis diagnosis.

These prints were created during his high school studies. The project, ‘Male, Female, Pain’, explores the complexity of being a trans man while having a chronic illness usually associated with womanhood and femininity.

Can you have endometriosis if you weren’t born with a uterus?

Male, Female, Pain (2023), Andy Shaham

There have been 16 known cases of endometriosis in people with penises.

No one knows why, but after all, we don’t know why people with uteruses have it either. Theories include liver cirrhosis, a side effect of oestrogen therapy (something that used to be used to treat prostate cancer), or chronic inflammation.

Can I get pregnant with endometriosis?

The relationship between endometriosis and fertility is complex. 30-50% of people with endometriosis will have infertility, but many people conceive without any intervention.

It’s not known entirely why fertility can be impacted by endometriosis but inflammation may create a toxic environment for eggs and sperm, scars and cysts can form physical barriers to conception, and it may affect the number of eggs produced. 

There are options available if you want to get pregnant. This includes blood tests and ultrasounds to assess ovarian reserves, surgical treatments to unblock the ovarian tubes or other physical blockages, freezing eggs, and assisted reproduction such as IVF or intrauterine insemination.

Activism

What can you do to advocate for people with endometriosis? 

Activism comes in many forms and can be big like organising protests and strikes, or small - but equally valid - like getting your HR department to change its flexible hours policy.

 Individuals and charities all over the world are fighting for us - getting governments to commit funding for research, changing laws and policies, running support groups in person and online, fundraising, combating misogyny, white supremacy, queerphobia and transphobia, and raising awareness of this extremely common disease.

Join us.

Conversation Prompts

How can I start a conversation with a loved one about endometriosis?

“I’m here to listen”

“Which sex positions would be more comfortable for you?”

“How is your pain today?”

“Don’t feel pressured to talk/hang out right now, let’s do it when you’re ready”

“Just wanted you to know I’m thinking about you”

“Is there anything you want me to get from the shop? Painkillers, pads, chocolate? It’s on me.”

Endometriosis Friendly Employer Certificate

Work and endometriosis aren’t always compatible - calling in sick regularly, commuting can be impossible, it’s a struggle to keep down a job and career progress can be stunted.

And it’s just as hard freelancing where there’s no sick leave. The disease causes workers on average to lose 6.3 hours of work per week.

Endometriosis UK has a Endometriosis Friendly Employer Scheme where employers commit to making an environment where employees with endometriosis can thrive at work. This may include changing policies to allow for flexible hours and remote working, or providing managers and employees with information resources.

Zines About Endometriosis

These zines have been made by or in collaboration with endometriosis patients.

Art is extremely powerful - raw data just can’t communicate the emotional impact this disease has on people. Take a moment to read about their experiences and learn what people need so you can platform patients and advocate for them.

RAW

Justyna Green

Endometriosis mini zines

Laura Saunders

Endometri O Sis!

Lisa Derrick and Sarah Mertonearn

My Endometriosis Story

Lily Williams

Endo zine

Jamie-Lee Wain

Experiences of endometriosis in Wales

  • What is Endometriosis?

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  • Normal or not normal?

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  • The medical pathway

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  • What next?

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  • Let's talk about it

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  • Making the unknown known

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