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Suffering in silence: how the system turns a blind eye to endometriosis

By Sophie Seger

What if I told you that there is a condition that can cause your organs to fuse together, lungs to collapse and pain so excruciating you wish for unconsciousness? What if I then told you that nearly every person with this condition has been dismissed when they sought help? Well, this is what is happening and it's about time we uncovered the truth and give a voice to those of us who have suffered in silence for too long.

women on a bed in pain

Endometriosis is a condition affecting one in ten women and people assigned female at birth. It is when tissue similar to the lining of the womb forms in other places and can be found on every organ in the body. To put this into context, it can cause excruciating pain – with many women saying it is worse than labour, as well as irreparable damage to organs, infertility in some cases and many other symptoms.

So why is a condition that causes so much devastation treated with such dismissal by the medical system? I spoke with people with the condition, a specialist and some MPs on the Health and Social Care Committee to find out exactly what is going on.

Growing up I never had much contact with the healthcare system other than the usual A&E visits that come with being a clumsy child. Perhaps this is why I was unaware that the medical system is, and always has been, built against certain populations in society – in this case women and those assigned female at birth.

My blissful ignorance was snatched away from me at the age of 19 when I woke up in agony. That day in 2019 marked a permanent change in my life and opened my eyes to how sexist our healthcare system is.

It took me over a year to get my diagnosis – the average in England is eight years - and during that time I experienced so much medical trauma that it left a deep mark on my psyche. I had nurses

laughing at me saying, "why is she in hospital for a period?” whilst I was collapsed on the floor, I had

a doctors appointment where the first words that came from her mouth were, "you've not done your eyebrows well today, have you?” and I had countless doctors tell me that there was nothing wrong with me and I was simply experiencing a period. They made me feel like some silly little girl who was too dramatic, when in reality all that time I was suffering with endometriosis. I became so convinced that my pain was in my head that when I finally had surgery and came to being told they had diagnosed me, the first thing I said to my mum and boyfriend was, "I'm not crazy”. I felt relief at being diagnosed with a life-long condition that has no cure. That should never have been the case.

My troubling experiences led me to creating an Instagram page where I shared what I had been through. To my surprise, I found a community filled with people who had similar experiences and it quickly became clear to me just how unhelpful the medical system is with what seems to be widely

considered a 'woman's issue'.

I asked people from my Instagram who have either suspected or confirmed endometriosis: "What is something a medical professional told you about your endometriosis?”

An overwhelming number of people said their doctor told them to get pregnant (an enduring myth that pregnancy is a treatment). Most shockingly some people were teenagers when they were told this.

Another woman said her endometriosis specialist said – when talking about his patients as a whole, that it was no wonder they all had so much pain because they all chose such stressful careers.

Yes, you heard that right. A trained medical professional insinuated that his patients' pain was their own fault – it reeks of sexism.

Only 26% of people with endometriosis found their GP helpful
(All Party Parliamentary Group on Endometriosis)

When asked how they were made to feel about their endometriosis, most people said things like "crazy”, "it's not a 'real' illness and that we should just get on with it” and like they were "wasting their time”. The statistics support these experiences: the APPG did an inquiry into endometriosis in 2020 and found that only 26% of people with endometriosis found their GP helpful and 58% had to visit the GP over ten times before they got their diagnosis. The lack of funding also shows how the condition has been neglected. In America in 2023, the spend was only $1.25 per person affected by endometriosis whilst it was $42 per person affected by diabetes (a condition that affects the same percentage of people in its respective populations).

So what is going wrong? Why are so many of us being treated so poorly when we are at our most vulnerable? Why do we grow up thinking that excruciating period pain is normal? And most worryingly, why do doctors seem to hold this same belief?

I contacted MPs on the Health and Social Care Committee to ask them what they think is going on and what the government is doing to improve things.

I asked the chair of the committee, Mr Steve Brine, about any plans for improving endometriosis care and women's health more widely – specifically about the new Women's Health Strategy. His response was disappointing but not surprising. He said the committee hadn't done any recent work on endometriosis and that he – the chair of the Health and Social Care Committee – was not in a position to answer my questions. He rounded things off by saying that increasing awareness amongst medical staff is important, but what use are empty words when we need tangible action?

Unlike the chair, Rachael Maskell, a committee member, gave a more in-depth response, acknowledging the "serious challenges in the system” with regards to funding and support for women's

health. She said that in her constituency, York, they are introducing a Women's Health Hub which will provide focused care where there is the potential for running education sessions. She did, however, say that she believes the primary focus should be on addressing the training of medical professionals in endometriosis and support for faster diagnosis times. She also stated that problems with gynaecology care have "been a sustained issue in healthcare, where women are not taken seriously”.

Of course, her comments highlight the concerning state of care in England, but it is refreshing to hear a politician speak with such candour and confront an issue head on rather than hiding behind excuses. I have no doubt that society would be a better place if more people were able to admit to problems and discuss solutions rather than running around with their heads in the sand.

The introduction of these Women's Health Hubs and the Women's Health Strategy are reassuring. It shows some small steps in the right direction, but make no mistake, this will not be enough. The en tire system needs a reboot, from staff training to awareness to funding. It all needs to change.

I corresponded with Dr Martin Hirsch, an endometriosis specialist, about his views on what the healthcare system is doing right and what it can improve on. He said that "most patients I see have had challenges along their journey to see me as a specialist. I acknowledge there are boundaries people face”, but he also mentioned that since 2013 there has been an increase in specialist endometriosis centres from 34 to 70.

As someone with the condition, I think I can speak on behalf of our community when I say that what we are seeing is not enough. I often hear people speak about endometriosis as a benign condition,

which it is, but benign does not mean that it doesn't ruin lives. I myself cannot work a full-time job, I live with excruciating pain that has a significant impact on my quality of life, I've lost friendships and

dreams and I'm not even one of the people whose mental health has suffered as a result of endo. For those who now also deal with depression or anxiety, the impact it has on their lives is tenfold. It is not uncommon to hear of endometriosis sufferers who have sadly passed away because they could

not cope with the suffering and the lack of care any longer. It's about time we start seeing change. It's about time we stop dismissing the condition as a normal part of being a woman.

By shining a light on the mistreatment we deal with across the world, I hope we see real change. I hope people take it upon themselves to have the conversations, to speak up when they see injustice

and to ensure that future generations don't have to suffer the way we did.


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