the honest bits
living with endo
Not quite the life content I had in mind, but I’d be leaving rather a lot out if I skip it.
my experience
in a nutshell
I’ve struggled with symptoms since I was 11 and spent over a decade trying to get answers before finally being diagnosed with endometriosis through surgery in 2025. Having an answer was a relief, but I think I expected knowing what was wrong to make things a bit more straightforward. Turns out there’s rather a lot to figure out afterwards, too.
Endo is a huge part of my life and has shaped who I am, so it wouldn’t feel honest to leave it out of here. There’s plenty more to me, but it affects how I experience all the other things I share.
I’m still learning how to manage it alongside a full-time job and everything else. The pain is difficult enough, but the frustration, worrying about letting people down and constantly having to rethink what I can manage can be just as exhausting.
I talk about it because hearing other people’s experiences has helped me feel less alone in mine. I don’t always have anything particularly helpful or positive to say. Sometimes I’m just fed up, and I think there’s something reassuring about hearing that too.
the less visible bits
fine yesterday, bedbound today
I can be out doing things one day and unable to get out of bed the next. It’s confusing for me too. A good day doesn’t mean I’m better, and doing something yesterday doesn’t mean I can manage it today. I’d love a bit of notice myself to be honest.
grieving the life I thought I’d have
Sometimes I think about what I’d have done with all the time and energy this has taken up. Probably not anything wildly exciting, but I’d have liked the choice. There’s sadness about what I’ve already missed, then worry about what’s ahead. I’ve always wanted to be a mum, which makes the uncertainty around fertility particularly difficult.
the fight to be heard
The appointments, the chasing, explaining it all again and hoping this time someone listens. It takes so much out of you before you’ve even got anywhere. I’m angry that women are expected to keep fighting a system that should be helping them.
living around it
making room for life as well
There is still work I care about, a wedding to plan, a home to make, dogs to walk and a life I want to be present for.
I have a habit of trying to fit several days’ worth of living into one good afternoon. There’s stuff that needs doing, stuff I actually want to do, and I’m reluctant to give up either.
I’m working on stopping before I’m completely done in, rather than deciding I can squeeze in one more thing.
what helps me through
my bedside regulars
- Heat pad, always.
- Whichever Jellycat is currently on duty.
- Peppermint tea.
- My weighted blanket.
- Something on the telly that requires absolutely nothing from me.
- My mini pharmacy. Less cute than the Jellycats, but necessary.
a note before you go
this is personal, not medical
Everything on this page comes from my own experience. It isn’t medical advice, and another person’s experience may look completely different. If you’re worried about your health, please speak to a qualified healthcare professional.