Friday, April 23, 2010

Colossal Waste of Time

Basically no one knows what the fuck PCOS is (not the first time*) and I'm managing to hold onto my remaining red blood cells by some miracle I do not understand.

Pool. of. blood. this morning, people. Pool. As in swim. I have exceeded the definition I was given by my OB for 'problem' post partum bleeding by both quantity and time. And I haven't had a baby recently!

So because the red blood cells and other important oxygen related cell thingies were stable, the whole thing was a non-issue.

Which is as it should be, I guess, but here I am still bleeding. So nothing much changed for me. I didn't even get the progesterone shot the PCP told me about.

I did receive a lecture about why low carbing is bad for me, which I neatly turned around and educated ER staff on why someone like me should eat like that. And I explained PCOS. Multiple times.

Emergency Rooms needs to do better with PCOS. Maybe it's not considered emergent, but I would prefer medical professionals actually understand PCOS before deciding if it's an emergency or not. I would avoid awkward conversations where some well meaning health care professional tries to tell me I'll feel horrid on progesterone.

Ummm. No. PCOS is an overabundance of unopposed estrogen and not enough progesterone to act as a counterbalance. Also, I, personally have a luteal phase defect meaning I don't have enough progesterone to sustain a pregnancy on my own.

So yeah, could ERs get their shit together on PCOS? Please?

Also, kindly avoid conversational gems like this one...

"Come back if it gets worse though," they said after telling me heavy bleeding was no biggie.

"I came in because it got worse. I've already done worse. I'm not coming back," I said. "What's the point if the worst bleeding of my life is not considered relevant and all my hormone levels are 'normal'?" (By the way this is the oxymoron that is PCOS.)

I should've just stayed home, powered through it, smeared myself with progesterone cream, and waited for the hubby to get off work and go pick up the progesterone pills. It would've saved everyone, including my family, a lot of time and trouble. But I did that Tuesday and got a 'go to the ER lecture.' I got another ER lecture from the PCP via phone today.

The real irony? The ER wants me to go back to the PCP as well as an endocrinologist and an OB/GYN.

Which, boys and girls, exactly what have I been doing? Going to the PCP. Looking for an endo. Scheduling an appointment with OB/GYN.

And how much help have I had? Anyone? Not much.

I can't fucking win over here. PCOS is a homeless diagnosis. No coordinated care whatsoever.

I did have one epiphany. The narcoleptic I'm-going-to-pass-out-wow-is-it-hard-to-keep-my-eyes-open feeling could be that the prednisone taper is not being well received by the adrenals.

It's possible I have two separate things going 'kablooey' at the same time; PCOS and Cushing's. Neither of which will be addressed in the ER, or so I've learned today.

Meanwhile, since there's absolutely nothing wrong with me, I'm going grocery shopping whether I feel like I can safely drive or not.

Think I'm nuts? Here's another patient with adrenal problems who could not get good care. What is so frigging hard about this? What is the point of endocrinology if they never do anything?


*Ever have a pelvic infection as a result of an IUI and find yourself trying to explain to an ER what IUI or PCOS mean because they've never heard of either term before? I have. I don't think I made much sense though--it was after they administered narcotics via IV.

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