To think his behaviour at the zoo was OTT?

Not sure what point you’re making. OP was asking if she was being reasonable / unreasonable for still being annoyed at her partner over his behaviour at the zoo.

Because I know a lot of people with endometriosis, and I have compassion for them dealing with a debilitating disease.

Yeah I mean it does vary but my recent flare involved a hospital admission for pain management and a wheelchair from reception as I couldn't stand up straight

I'm waiting for excision surgery and removal of large endometriomas plus adenomyosis

I find it frustrating that people think that a flare means a solution would be to "sit quietly in a cafe". That really trivialises chronic illness. I have a condition that means I am always struggling. If it has got so bad I am going to risk ruining someone's plans that means it has gone way past "having a nice sit down in a cafe" and all the way to "crawl into bed and weep".

Most people with chronic illness get very good at masking being well for as much time as possible so as not to inconvenience or annoy others.

My DH would just quietly sit in a cafe until I'm done I guess. Sorry about the Endo though. My DS has often meant we've just had to abandon plans and go home or to A&E as he has something wrong but no one knows what yet. It does feel irritating and expensive. Once we were seeing a Show and DS became unwell before it started. DH managed to rush home with DS but obviously missed it. You do feel frustrated but love usually wins. It doesn't mean your DH frustration is any less valid though.

@Hoppinggreen

I get why you felt triggered by the "sit down in a quiet place" comment.

I think as women we are so used to being dismissed / ignored / written off as hysterical when we present to GPs with endo symptoms, that it becomes such a sensitive topic for us. We get so unbelievably fed up of being told to sit down til it passes / take a paracetamol/ drink water / get a hot water bottle etc etc. Because it's utterly fucking debilitating pain at its worst - a bad flare up genuinely renders me temporarily disabled, unable to stand, walk or communicate properly as all I can do it grit my teeth and cry out in agony. I'm aware of some women who've needed wheelchairs for this condition at its worst.

I get that the OP may not have been at this stage during the zoo visit, but if her condition is anything like mine, it can escalate and intensify very quickly and without much warning to that point of needing to be on all fours breathing through debilitating pain. It's so anxiety provoking as you know you'd look ridiculous in that situation in public, but what can you do? It's hell on earth, I wish they'd find a cure, or at least some form of treatment that helps.

You are probably right, apologies
I do get a bit triggered by people suggesting a "sit down" or a nice walk or similar (often GP's) when I know how awful endo can be for a lot of us.
As DD once said "as soon as I stop vomming and crying I will try and get up off the bathroom floor and practice mindfulness" 🙄

Yes, "in a lot of cases" but not in this case, which we were asked about and which people were responding to, and "can be" but wasn't in this case.

Hence "in a lot of cases" and "can be"

Hoppinggreen

The OP wasn't bleeding, shitting, vomiting and passing out from pain.
It's quite likely that her boyfriend would have noticed that.
She was obviously feeling significantly unwell and her boyfriend didn't understand how bad she felt. Once he did, he was "nice and comforting".
The OP sounds a sensible person who wouldn't be wondering if her boyfriend was being unreasonable by not noticing if she was bleeding, shitting and passing out - she'd obviously know that someone who didn't spot those symptoms was totally unreasonable.
And she'd have noticed he couldn't understand these things before - she's obviously not stupid!
The worst case scenario isn't always what happens. Maybe sometimes "sitting quietly" will help. It wouldn't have, in this situation, by the sound of it.
But I'm sure the OP isn't always expecting to collapse and shit herself at any moment and it would be awful for someone given a new diagnosis of endo to think so.
She obviously knows how to manage various degrees of her diagnosis and he needs educating in doing so too, if the relationship is to last.

Oh for god's sake. I have autism, my husband has autism, our children have autism. We are all still capable of taking care of someone when they are ill.
Unless his autism is so profound he can't hold down a job etc then I think it is incredibly defeatist to suggest that people with autism are incapable of putting someone else's needs first.
If he really cannot manage to be caring when op has a horrible flare then I think op should move on from the relationship because quite frankly this kind of behaviour is abusive

if men had it I am sure there would be a lot more attention and resources devoted to it

100%!!

Have you had endo?
You can be bleeding, shitting, vomiting and passing out from pain.
In a lot of cases "sitting quietly" won't cut it
I remember reading a dystopian/utopian novel once where most men die so women were in charge of everything and one of tha main medical advances was curing endo, if men had it I am sure there would be a lot more attention and resources devoted to it

Totally agree. It feels like unless it's cancer you are just meant to suffer in silence.
Endo can be devastating and profoundly disabling

In your place I would have found somewhere quiet to sit while he went round the rest of the zoo.

You know what he is like. You are still with him. Your life is going to be miserable if you don’t learn to cope with situations like this. However much you want him to change it isn’t going to happen.

She's the same as any other endo account. Raising awareness

It's just funny how accounts that raise awareness about living with cancer, living with chronic illnesses, living with a stoma etc don't get this about filming themselves and told they should be more organised with pain relief, just a "period pain" account

And it takes average 7 years to be diagnosed.. funny that women are trying to raise awareness(!)
Especially when I have had to explain in a disciplinary meeting over my sickness that no it doesn't just happen on my period and no I don't get any warning or ability to predict it

Yes, I know it's her phone.

It's no wonder doctors minimise pain if you think that's acted

Yes, I do think that's (badly) acted, but I'm not her doctor so it doesn't really matter what I think. Her doctor would hopefully know her and know if filming herself during a flare-up and putting it on the internet was usual behavior for her.

Maybe it would be more sensible for her to spend her time making sure she had cocodamol both up and downstairs rather than filming strips of naproxen and paracetamol that she has in her kitchen cupboards.

It isn't though. Nearly every woman has in her life experienced excruciating pain through virtue or her biological make up. It's called empathy. I don't need to see someone filming themselves in pain for likes to go someway to understanding what severe gynaecological pain feels like, I've experienced it, it's horrible.

Unless an emergency you should have gone back home to rest alone.

Yanbu, 4 hours of walking around and I would be done too.

@LaMarschallin the camera is her phone? On the stairs above her, propped on a stair
It's no wonder doctors minimise pain if you think that's acted
I say ow ow or fuck repeatedly because funnily when I'm in that much pain I don't know what I'm saying
And I've videoed myself before because doctors just haven't believed it so I've propped up my phone during a flare to show what's happening and try and describe the pain and say what medication I've taken

It all comes down to a lack of understanding from you both about each other's conditions.
You need a frank conversation re your endometriosis and what that means to you and how it affects you and also his autism and how it affects him too.
You just need to communicate and take it from there.

I'll just leave these screenshots here. Plenty of other resources online should people wish to educate themselves on the struggles of women with this awful condition and how it is not in the same league as "just period pain".

It's horrifying isn't it, you would think that on a website primarily for women there would be much better understanding