Posts Tagged PCOS
I don’t understand the mechanism of action. But after my appointment on Friday, I had about 30 degrees more rotation in my neck and the pain was significantly decreased. I went again today, and I now have full rotation (no, not Exorcist level rotation, I mean standard side to side human rotation).
I’ve been told that the acupuncturist can treat my sleeping difficulties, and my menstrual problems, and my allergies, and my pain. I’d really like to believe this, because dear lord do I want those problems fixed. But I truly don’t understand the *how* of it. Unless…
Today was a tough day. Healthwise.
I’ve been on a gluten challenge for two weeks now, at the insistence of the celiac specialist I’m seeing. And… she’s not wrong. I need an intestinal biopsy for an official diagnosis, which will make insurance a hell of a lot easier to deal with. And that requires me eating enough gluten to damage my intestines. But…
There are about a billion symptoms that go along with celiac disease (okay, that’s a bit of an exaggeration), and I’ve got half a dozen of them at the moment. Most distressing was the realization that I’m not actually absorbing the vast majority of my medications. And yeah, it’s pretty obvious. And no, I’m not going into detail on this one. Rare though discretion is on my part.
Was it Heinlein who said that? For some reason, I want to attribute it to him.
Any rate. If you couldn’t tell from the title of this post (and really, it’s a dead giveaway) I’m talking about menstruation. Here’s my menstrual calendar for the last year.
June 2009 – May 2010
I am apparently deeply untrustworthy.
Guess how I started my day today? With a spontaneous endometrial biopsy. Which is awesome. Aside from the pain part.
It actually is awesome. I’ve now seen three different gynecologists, two of whom are at Stanford (and I would have gladly seen the same doc both times, but she didn’t have any appointments available). One appointment was at PAMF, and that doc was quite nice, but also quite rushed.
I like PAMF. I get, for the most part, excellent care there. But one of the things that the Stanford docs have over PAMF is simply time. Stanford is an educational institution. Which means, sure, you may get a resident instead of a practicing physician, but it also means they have more time. And they’re more up to date on the newest tests and treatments. And they ask more questions. And they’re willing to run more tests. And they like exploring strange symptoms and conditions.
My first appt. at Stanford Gyn. took an hour, and in that time they did a thorough family history, did a pelvic exam, did a urine test, and gave me a sonogram. Right then and there. They wheeled the machine in and proceeded to show me my ovaries and point out my cysts. They also appreciated that I wanted to see those things.
At PAMF, the doc prescribes the sonogram for me and then I have to schedule with Radiology. Which usually means the actual sonogram will happen in another two weeks. And the sonogram tech can’t show me my ovaries or point out where my cysts are, because only doctors are allowed to do that (which makes plenty of sense). But the doctors don’t have time, there, to do these tests themselves.
Today was a follow up to talk about my irregular menses, most likely caused by PCOS. (I find the term “irregular” ironic in this case, since I bleed quite regularly — every two weeks). The treatment I’d tried (which actually was prescribed by my endo at PAMF) hadn’t worked. It helped, a bit. Gave me a few more days between periods. But still.
The gynecologist who saw me today went over my options: birth control pills (this is always the first option, but one I don’t want to take), a hormonal IUD instead of the copper, Nuvaring, or a stronger dose of the prior treatment (progesterone pills, taken to provoke a full shed of the uterine lining). But, she said, I want to do an endometrial biopsy and we can discuss options after we get the results.
And she did it right then, right there.
This is the first time anyone has biopsied my endometrium. Considering my history of excessive/irregular bleeding, you’d think that would already have happened.
It wasn’t fun. In fact, it hurt quite a bit. Somewhat akin to the uterine sounding during IUD insertion. Except, in that case, I was already doped out on painkillers and other medications, so that probably actually hurts a lot more in reality.
But. I’m really glad my doctor did it.(Also – I get that a lot of guys get squeamish talking about female biology, and some of my guy friends will complain about me talking so publically about it. But really, deal. Female biology, and medicine, needs to be more openly addressed. Making it a taboo subject promotes ignorance, misunderstanding, and poor medical care.)
Technically, no one else in my family has ever been diagnosed with Sleep Apnea, but I’m pretty sure I’m not the first to have it.
What I’m about to say will no doubt provoke my father into an argument (one we’ve had before). But.
In 1990, one of my uncles mysteriously died. He was 38, seemingly hale and healthy. No one, at the time, could figure out the cause. All we knew was that during his sleep, he cried out and accidentally struck his wife. By the time she was fully awake and realized something was wrong, it was too late. She called for help, but the ambulance arrived far too late to do anything. The only theory the coroner had was that it was some sort of heart failure.
Sixteen years later another uncle cried out in his sleep, waking his wife. Her cry for help reached their son, who performed CPR while she called for an ambulance. This time, the ambulance arrived in time. It was cardiac arrest, in an otherwise hale and healthy man.
In the hospital, right after the attack but never again repeatable, my uncle evinced a heart arrhythmia. A prolonged QT, somewhat rare and unusual in that it strikes only during sleep. Very simply, that means that his heart took too long between beats.
My father may be right, and Sleep Apnea may have nothing to do with it. But. Sleep Apnea is known to cause cardiac arrest. Sleep Apnea is even known to cause not just heart arrhythmias, but also a prolonged QT.
“After adjustment for age and body mass index, the odds ratios were diminished but still remained significant: Sleep clinic OSA patients had a 2.6-fold greater risk of long QT syndrome than controls, while OSA patients from the general population were at 2.3-fold increased risk.” – Jancin, Clinical Psychiatry News.
Then let us look at the other comorbid conditions:
Each condition listed on that graph has enough supporting evidence to be included in the general sleep literature (although “pacemaker” is really more a treatment than it is a condition). But that graph, while lovely and useful (snagged from ResMed) is not absolutely comprehensive. It can’t be, because 1) it only addresses men, and 2) there are new developments that haven’t yet been accepted into the cannon. We also have evidence of links to Ischemic Stroke, GERD, PCOS, and Metabolic Syndrome.
Let’s be clear here. Correlation does not necessitate causation. Just because two conditions often show up together does not mean that one causes the other. Many of those correlations are still under study, although some (like the one with PCOS) have enough substantiation to be widely accepted.
Then there are the other standard signs (not conclusive on their own, but alarming when taken in conjunction) like snoring, trouble sleeping, frequent wakings, and fatigue (though don’t ever tell a doctor you have fatigue, they seem to think that translates directly to “depression” or “hypochondria”). To my mind, the presence of any of those serious conditions is good enough reason for someone to get a sleep study. Combine them with each other or any of the other signs… yeah. Get thee to a sleep doc.
Back to my family. All on my mother’s side of the family we have: sudden death during sleep, cardiac arrest, heart arrhythmia (specifically prolonged QT), GERD, ischemic strokes, frequent wakings, trouble sleeping, snoring, fatigue, and –if we’re counting me– PCOS and… wait for it… wait for it… SLEEP APNEA.
Sounds like a party, no?
I may be emotional about this issue (all right, I’m definitely emotional about it). But that doesn’t change the fact that within that one branch of the family we have 10 of the conditions known to be linked to sleep apnea — in addition to Sleep Apnea itself. My mom alone has six of those conditions. Six.
There is no way I am the only one.
Edited to add: Oh, ya. And one of my maternal cousins has a Sleep Apnea diagnosis, too. There are at least two of us in my generation.
My endocrinologist wants me to lose 50 pounds. Yep, 50.
This presents me with a challenge to figure out how to use my OCD to facilitate weight loss, without letting it get out of control.
Before anyone tells me that I don’t need to lose any weight and I look fine (and thank you if you were going to say that) it’s not about the way I look. It’s about hormones. Insulin, to be specific.
I have PCOS, which means that I’m more at risk than average for diabetes or other insulin related problems. Weight is a big factor there. (I’ll go into more about this in a future post because I have, of course, obsessively researched it).
I do have to say, I think I’d be unhealthy (and damned unattractive) if I lost that much. I also think I wouldn’t have breasts if I lost that much. This would make me sad, as I rather like having breasts.
The first challenge is figuring out how much I want to lose, instead of obsessing on 50. My endo pulled that number from a BMI chart. My current BMI is 28.2, which puts me solidly in the overweight category, nearing obese. However, I don’t buy into BMI.
In truth, although I weigh 20 pounds more, now, than I did when I got out of college 10 years ago, I’m smaller and stronger than I was then. The same clothing is looser on me now. Which means my muscle density has increased. Which is a Good Thing (TM). However, my BMI is higher.
Personally, I’m thinking 15 pounds, although that leaves my BMI in the overweight category, at 25.8. I’m picking that as my initial goal and ignoring that little obsessive voice that keeps saying, “He said 50. He did say 50, you know. How about 50?”
The next challenge is using my OCD just enough to be helpful but not so much that I’m miserable. As we already know, I’m good at tracking things. So, I’m tracking my intake. I know that if I follow that primrose path too far, I could end up in serious eating disorder territory. I have, luckily, never been in that territory, so for now I’m going to say my obsessive tracking will probably be fine. Thanks to my lovely iPhone, I’m using LoseIt to track my food intake. More later, no doubt, on that.
I’m using my FitBit to track my exercise (this is where my Christmas money went – thanks Mom & Dad!). More on this in another post, too.
I’m also walking more. Last weekend, J and I walked to a party 3 miles away instead of driving. There and back again gave us 6 miles, and two hours of conversation.
The most challenging thing, however, is not looking at the scale. Strange, to say I want to lose weight but then say I don’t want to look at the scale, no?
Thing is, for me, looking at the scale is self-sabotage. If I see that I’ve lost a pound or two, then I feel like I can relax, which means I end up gaining. If I see I’ve gained, or that I’m staying the same, I get discouraged and don’t want to continue. If, on the other hand, I don’t look, I keep eating and exercising according to plan. And the plan is a good one.
But every morning, I feel the absolute need to weigh myself. It’s not optional. I need to. I will stand there, frozen and unhappy, staring at the scale and not stepping on it, knowing I shouldn’t do it, but unable not to. This tends to slow the morning down considerably. Finally, today, I closed my eyes, stepped on the thing, and asked J to look – but not to tell me any numbers. Just to tell me if I was doing all right.
So far, so good.