When Endometriosis Care Feels Like It's Taking Steps Backward

When I woke up to the news circulating through the endometriosis community this week, my heart sank. That familiar, heavy feeling settled in my chest, the one that takes me right back to the hardest moments of my own journey. The confusion and the isolation. The feeling that my health wasn't a priority to the people who were supposed to help me. I won't share specifics here, but the underlying story hits our entire community hard. It brings up so many concerns I know so many people already have in the endometriosis space.

Reading stories like this takes me back to the times I felt dismissed, when I left appointments with more questions than answers or spent so much time in hospitals with no real answers or support.

I remember not knowing who to trust or what the right path forward was. I remember feeling so incredibly alone, and like I was going crazy.

When news like this breaks, it feels like confirmation of our worst fears: that the system we're meant to rely on doesn't always protect us. That our bodies, our pain, and our experiences can be minimised or mishandled. It can feel like all the progress we've fought so hard for disappears in an instant, like we've taken ten steps backward just as we were starting to move forward.

When I feel overwhelmed, by situations such as this one, I try to ground myself in what I know to be true: There are so many people working tirelessly to make life better for those living with endometriosis like the researchers, advocates, clinicians, nurses, and all the other allies who truly care.

There are healthcare providers who centre patients, respect autonomy, explain options, and truly listen. They exist, and they are making a difference.

Stories like this absolutely deserve the attention they're receiving, and it is so necessary that awareness is brought to situations like this. At the same time however, I do feel a quiet sadness that we so rarely get to hear positive ones. I wish we got to see more discussions of compassionate surgeons who stay late to answer questions, the GPs who genuinely listen, the nurses who hold your hand before surgery, or the research breakthroughs changing lives every day. That work matters too, and for the mental wellbeing of our community, that acknowledgment and awareness is crucial. 

Events like this show just how far we still have to go in women's health and endometriosis care. But if there's any silver lining, it's awareness. These conversations force hard but necessary questions and improvements about informed consent, patient rights, accountability, and standards of care. My hope is that real, meaningful change comes from this: better training, stronger protections, and more transparency.

We deserve better. And maybe this will help get us there.

If you've been impacted by this situation, or by any experience where your care fell short, we see you and we are here with you. Please know this:

You matter.

Your pain is not a burden.

Your voice is important.

You're allowed to ask questions.

Seeking a second opinion isn't just okay, it's your right.

I don't have neat answers or a tidy conclusion. This is messy, complicated, and painful. But I do know this: our community is resilient. We keep fighting for better care, we keep sharing our stories even when it is so difficult or uncomfortable. Until things change, we'll keep showing up for each other. Because we're not going anywhere, and it is time we get the care and recognition we deserve.

Anna x