Catching you up (19)

(Selections from October, 2009)

I cried in the hospital clinic yesterday.

It's not his fault he was so rushed, uncaring, and uninterested. He's being trained to focus on lab results rather than people, and if the lab results are fine, it's somebody else's business, eh?

But I have the luxury of caring. I don't have responsibility for targets, for integrated pathways, or for commissioning patient tests and services. Therefore, I have the time to actually think about what might be wrong with me. Me. One Person. One non-dying non-emergency person whose bloodwork just happened to be, for the most part, on the right side of normal. Normal. Who really decides what normal is? And why is 220 normal and 180 not?

"Your cortisol levels are fine" ... well actually, you haven't tested them in the afternoon, the evening nor when I am stressed, so what have you really told me about the symptoms I'm reporting? All I've learned is that you are NOT LISTENING to anything I tell you and that you are basing your diagnosis on an unfounded medical assumption that if my levels in a non-stressed morning are fine (and yes, they are low but fine), they must also be fine at 3 pm, when my headaches and fatigue return full force. Thanks for invalidating my actual experience in favour of a single blood test.

"Your testosterone levels are fine but your sex hormone binding globulin is ever so slightly low" ... strange how NOW my barely normal values actually matter to him. Oh wait, you've already decided what was wrong with me based on my phenotype and the occurrence rate of the syndrome, didn't you?

Now I'm really angry.

You see, it's a bit of a sore spot to me.  Some doctor came up with an idea about polycystic ovarian syndrome and other doctors ran away with it. And now, thanks to one of the worst diagnostic criteria in the world and way, way too much press, women everywhere can be labelled PCOS just because they ovulate irregularly, are overweight, and (god forbid) aren't perfect little hairless treasures: based on a few inconclusive and conflicting blood tests, irrespective of their personal accounts, because, as we all know, if it can't be discovered by existing blood tests, it doesn't exist. It can't be true. And there are no other reasons for why.

Let me remind you, doctor, since I didn't have the energy or the inclination to do it then, that obesity is not a diagnostic criteria of PCOS. At best, it's a correlation. So, thank you in advance for not listening in your medical statistics class in school. And also thank you for not actually admitting that was the main reason you felt I had PCOS. Because your real reasons sound just so conclusive now in light of my actual results:

(1) My repeated glucose tests are NORMAL. Not even borderline. Not anywhere near that border. In fact, you might say they are my most conclusive test.

(2) My ultrasound showed completely a NORMAL and HEALTHY production of follicles ready for ovulation. Not a single indication of PCOS nor any cysts at all.

(3) My hormones for ovulation (FSH, LH) are NORMAL and my LH peaks as expected. I have every physical indication of ovulating, including changes in my basal temperature. But one mis-timed progesterone test suddenly tells you I didn't ovulate. And one test showing I didn't ovulate means I have PCOS.

I told you I had a very stressful episode which disrupted my menstrual cycle and caused my luteal temperatures to drop early. And you mumbled about how stress can put my ovarian reserves over the edge. Wait, are you trying to tell me that every athlete and high-powered female exec has PCOS? I'm sorry, I had no idea 7% of the population actually meant 70%. Because clearly living a chronically stressed life means absolutely nothing to you. And so, every women who has ever missed a period because of stress must have elevated androgen hormones just waiting gleefully for an excuse to cause polycystic ovaries.

To be honest, other than the wealth of information from these blood tests, which I could've gotten without the insulting interjections from medical professionals, this jaunt in endocrinology was nearly a complete waste of time. I was afraid it would be. I sat down in advance and said to myself "the worst case scenario is if the blood tests come back and all they can say is that I have PCOS".

Now, there's nothing actually wrong with me having PCOS, per se. It's just that: I don't have it. And I'm offended by the idea that a blanket diagnosis is the best they can do. I told him specifically that fertility is just one part of why I was there. And he promptly ignored me.

So, no wonder I started to cry.

My counsellor suggested that there might be something biological going on, as the depression and anxiety never seem to be in reaction to any of my life events. And, the anxiety is getting worse. My endocrinologists say my blood tests are fine and don't even ask about my symptoms or why I am there. No wonder people with mental health problems keep them so quiet. It's not very hard to do, when even medical professionals try to pretend they don't exist, muchless that they have anything to do with MEDICINE.

I can't really say I was surprised though. I already self-referred for CBT before I came to this appointment, because I expected the endocrinology clinic would be useless. So now my little hot potato is being passed back into my hands, and I get to decide whether I want, in the next 18+ weeks of waiting for CBT, to be referred to a reproductive endocrinologist.

I can see that conversation now:
"You are overweight. I cannot tell you what's wrong until you lose weight."
or "You aren't menstruating every 28 days? Here are some drugs."

So very productive. Thanks for that referral. You'd never know that just moments before, I had looked straight into his nervous eye and said "Listen, I could care less about my fertility right now. My priority is sorting out my depression, anxiety, headaches and fatigue first."

It was written all over his face: what does your mental health have to do with me?

Read on the NHS Choices blog.