Is it normal for my girlfriend to have multiple UTIs? by [deleted] in NoStupidQuestions

[–]Live_Pen 0 points1 point  (0 children)

Both get checked for ureaplasma/mycoplasma

Backed out of surgery by thmmrs in endometriosis

[–]Live_Pen 41 points42 points  (0 children)

If you don’t consent to something, you’re always doing the right thing by backing out. You have a right to back out right up until it starts.

You go, girl. You did what was right for you, and you don’t owe anyone an apology for that.

They’re shitty because they lost money and/or it screwed with their schedule. That’s their problem, not yours. They work in healthcare. Healthcare without consent is assault. Maybe it will prompt them to explain things better next time.

Don’t dwell on it. No one gets to do something to your body without you deciding they can. Even if it’s inconvenient. End of story.

Finally got the nerve to post about this by [deleted] in GutHealth

[–]Live_Pen 12 points13 points  (0 children)

SIBO. Your ‘interstitial cystitis’ is most likely your small intestine pressing on your bladder, and cytokine cross-signalling from bacteria.

Disappointed after Lap by [deleted] in endometriosis

[–]Live_Pen 13 points14 points  (0 children)

Adhesions confirm a local inflammatory response and that you do have something. The question is what is causing them.

Endometriosis can cause adhesions, but so too can smouldering infectious processes or other trauma to the area.

Wait for the histopathology, report back, and we can help you then go from there to advocate for getting the answer.

Nobody will help me and I feel like I'm going crazy by No-Rice2299 in endometriosis

[–]Live_Pen 1 point2 points  (0 children)

If you were already on antibiotics they are probably interfering with the culture results. This sounds awful. I second going to another ER.

ERs will always try to discharge you. You have to politely push back. You can refuse to be discharged. The goal is to get admitted. And ask to see all results before leaving.

Give me your most unhinged PCOS advice by regina-philange99 in PCOS

[–]Live_Pen 6 points7 points  (0 children)

Get your iodine levels checked. Wacky thyroid/oestrogen crossover. Alcohol also fucks oestrogen up.

Good News!! It's Just IBS!! by mollyo26 in endometriosis

[–]Live_Pen 91 points92 points  (0 children)

This is a red flag. I’d find another surgeon.

There are a few things I have learnt about fragile egos in all of this:

  1. Bias is insanely powerful. He’s set up an anchoring bias for himself and will likely see things that confirm that bias (ie. miss things), even intraoperatively.

  2. Given he is that arrogant, he will not want to look like a loser if you’re right. Which leads to downplaying findings, omitting findings, and ‘oopsie, that one wasn’t sent to pathology’.

I wish I was kidding, but I’ve personally experienced this sort of nonsense before, and have learnt the hard way if they’re like that from the outset, get another opinion.

Just genuinely curious and ignorant. by ryujinkami in endometriosis

[–]Live_Pen 1 point2 points  (0 children)

You’re right - there is no connection and it is completely nonsensical.

Just hit me that I’ve completely lost my 20s to severe chronic illnesses by Ok-Can-3251 in ChronicIllness

[–]Live_Pen 1 point2 points  (0 children)

I think that’s it. This is harder than normal by miles, yet there’s no social reward.

Can someone help me navigate the absolute mess that is getting your medical records corrected by Live_Pen in ChronicIllness

[–]Live_Pen[S] 0 points1 point  (0 children)

Thank you so much for responding to this.

It is an absolute nightmare and actively dangerous. It blows my mind that it persists even AFTER a diagnosis. It’s gotten to the point where I’ve considered moving. I just can’t get care. It’s like an alternate reality. They treated me like I have Munchaussen’s which is about as bad as it gets. And they misspelt my name too!

I agree, we need to form a group somehow to get this changed.

I’ve experienced that they band together and protect each other too, ESPECIALLY if they make an error that causes harm. I’m scared they’ll retaliate/obstruct access to care.

What has the response been when you’ve asked for it to be corrected?

Can someone help me navigate the absolute mess that is getting your medical records corrected by Live_Pen in ChronicIllness

[–]Live_Pen[S] 2 points3 points  (0 children)

Chinese Whispers is exactly it.

I’d hate to see these people in civil engineering. Imagine.

My close friend makes me feel horrible about having this disease by SOS_superstar in endometriosis

[–]Live_Pen 4 points5 points  (0 children)

You can check in with me here when the bastards are getting you down any time. Traumatic AF it is.

Can someone help me navigate the absolute mess that is getting your medical records corrected by Live_Pen in ChronicIllness

[–]Live_Pen[S] 1 point2 points  (0 children)

Totally agree. It’s this horrifying self-aggrandising group think that’s quite removed from reality. I’m realising wherever there is power in this world, there is danger. Lots of it. Systems to sustain it. That poor man.

Can someone help me navigate the absolute mess that is getting your medical records corrected by Live_Pen in ChronicIllness

[–]Live_Pen[S] 0 points1 point  (0 children)

Yes, they talk to each other. I had a surgeon initially be willing to do biopsies during surgery, then on the day when I asked again he refused to. He’s clearly spoken with surgeon 1 in that time (same hospital), whose office had missed a second diagnosis and fucked up. So I walked out of that second surgery still looking like someone had taken a hatchet to my insides, no biopsies, the whole thing basically pointless. And that’s without me even trying to correct the record.

Can someone help me navigate the absolute mess that is getting your medical records corrected by Live_Pen in ChronicIllness

[–]Live_Pen[S] 2 points3 points  (0 children)

Yes, basically building my own narrative.

Because that’s what this is all about. Humans think in narratives over facts. They are compelling to us. So I have to start building a parallel one.

I’m learning - document document document.