I was reading a sad article about a women who has passed after going to bed with severe period pain. They don’t know why yet, but she did suffer from Endometriosis.
If she was a member here and family read any messages, condolences to you, it’s a harsh disease to cope with.
So sad
I have not seen the article
I also read this yesterday it’s extremely heartbreaking 💔 and soo saddening. Thoughts go out to her family & friends it’s also worrying to know it’s linked to endo? And could it possibly be something else they did not pick up on? On underlying illness?
It is very sad.
It’s important to remember that pain can mean all sorts of things going on, could turn out to be her appendix, but that could’ve been affected by Endo. We know Endo intrudes and damages organs. Lisa Marie Presley died of bowel obstruction due to adhesions earlier this year, could be similar to her passing.
We get dismissed as drs assume it’s ‘Endo’ and we in turn believe it half the time. If pain gets worse or is different take note of what your body is telling you.
I hope there’s some follow up on this story as it could send many people into a panic. I’m not sure I agree with the journalism here as the cause of death is still unknown.
I hope there is to.
Please don’t take this the wrong way, but I disagree, I think it’s about time people realised how much damage Endo can do if not treated. We all have our own opinions. The only actual treatment is surgery. We suffer a very debilitating disease and it’s not benign, it spreads. The more stories like this become known the better medical help we’ll get.
Don’t mind you disagreeing at all. If there’s more news would you please share it with us all please.
Will do 🙂 just hope they do carry on with it.
Thanks for the news! It might be related to diaphragmatic endometriosis which could have triggered a heart arrest. I got pain last month at the heart that was worse than child labour pain and a few months ago, a pneumothorax, each time triggered by periods. I know that if I don't get a surgery, I might be next due to the lungs being affected by endometriosis.
You’ve a lot to deal with, when is your surgery? 🤞 it’s soon and they can ease your suffering.
Waiting to hear back from the team of surgeons. 👍
I read this too… soo sad and really worrying as well
It is really sad, her family must be heartbroken.
once we know the results it’ll be helpful.
This is really sad, is there any more info into what happened to this poor lady?,
Its a really awful illness and no where near enough is done for people suffering with this illness, i genuinely believe Drs should be held accountable for the dismissal of symptoms and what down falls patients have to go through because of it.
Theres women taking their own lives because they're not being heard, i personally was made to physically starve and refused nutrition for 8 weeks, and ive heard so many women being treat badly via gastro teams because they refuse to acknowledge this illness, and instead chalk their symptoms up to functional bowel disorders!
Changes 100% need to happen 😌
I can’t find anything yet, I’m hoping there will be.
Definitely held accountable, I’m still waiting to hear back from GMC for a complaint. That’s been going on for over two years but really struggling to get a final answer.
It’s awful how it makes us feel. I told gastro it’s not a menstrual disease, but when I mentioned Endo he only wanted to refer back to Gynae on that, I have no bits left but have bowel issues. What’s a Gynae going to do!
Sorry you’ve had such a rough time with gastro as well. It’s crazy isn’t it, did you complain? I was on the verge and they gave me an appointment within a few days 😂
Its awful isnt it, literally this is the same kind of patterns playing out, get told its gastro, gastro refuse to acknowledge endo, gynae say its a gastro sit h😅
Am sure if more Drs where held accountable they wouldnt be making these judgments n blatent ignorant mistakes.
I think you should deffo still lodge a complaint if you feel its valid too because what happens when the situation arises again,
I'm 1000% suing them, its not acceptable or even humane to make another human starve themselves lol, i was seen by gynae once who made me believe i was gunna get me op in as little as 3 months, when i phoned up i was put on a 52 week waiting list 😲😅,
I had to go private lol.
I think i came accross an old post of yours where you where still getting pain when eating? Am sure the post was 4 yrs ago I was wondering how long after your op you where able to eat properly again? I'm 7 days post n still ot a lot of pain when eating, n honestly am terrified that i'll never eat solid food again 🫣🫣
Hi
Good luck with your complaint 🤞 if you go to GMC it takes forever!
It’s always passing the buck in the NHS, most of the time it’s me suggesting things 😂
Sorry you had to go private, it’s shocking what we have to go through, a year was ridiculous.
I still can’t eat properly without getting pain. I normally have a pastry for breakfast as it literally dissolves in your mouth and tea, lots of chewing to break the food down helps, meat I’m trying to avoid more. I don’t tend to eat during the day, never have an appetite, taste buds override sometimes 😂
Don’t look on me as an example though, I’m sure you’ll get eating again. I ignored the bad periods all my life until body couldn’t cope so mine is likely very long term from Endo.
How is pain generally with recovery?
Oh wow a dont think i could cope with never eating properly again 😫...
My previous surgery i didnt know was ablation so i never fully was free from symptoms🙄 that was bloody private too lol,
Am not sure if it helps dependinv on where ur pain is, but i also developed exocrine pancreatic insufficiency, no know cause so its been put down as autoimmune . But i developed this after 2 years on prostap injection.
It actually causes pain with eating, usually upper left and around belly button for me. If thats where your pain is of course...
It turns out this time is was from bowel adhesions, i'll be gutted if they just form back again,
Someone mentioned a womens health physiotherapist can help with pain after surgery or from adhesions so im gunna look into that aswell.
I'll try anything 😅😅
Not sure if you've tried that either or summit for ya to look at maybe ☺️
I’m sure you’ll be better off, it’s very early days since surgery. Don’t get despondent too soon 🙂
I do get pain upper pain left and right (had gallbladder out last year with liver adhesions) but bloods come back normal, they always have though 😂
The pain round belly button is better since they took the appendix out back in May, I can sit for a few hours now.
Hopefully now they’ve got rid of bowel adhesions things will settle, it’s a lot for your body to take in at the moment. Don’t be too hard on yourself and plenty of rest 🙂
I’ve found acupuncture they give better than exercises, don’t try physio for at least three months after op though.
I’ll try anything 🤣 I’ve persuaded gastro to do the camera you swallow, he’s had to refer to another hospital though. Hope the referral doesn’t go to the gastro I’ve argued with before 🤣🤣🙄 could be interesting!
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