05 June 2012

Ovaries, Whiskers, and Fat Cells! Oh, My! (Part 1)

I mentioned in a previous post that I have been diagnosed with Polycystic Ovarian Syndrome (PCOS), otherwise known as polycystic ovary disease, functional ovarian hyperandrogenism, ovarian hyperthecosis, sclerocystic ovary syndrome, and Stein-Leventhal syndrome. Thanks, Wikipedia.

(Personal note, I find the plush organs and cells 
and things to be extremely humorous.)

I was diagnosed in 2006, and it was both a relief and a trauma for me. It was a relief because I FINALLY had some explanation for all the stuff that was weird about me. It was a trauma because "now" I was diseased. Gasp. Wail. Oh, the woe! Sob. Sniffle... Yeah. That. Truth be told, nothing had changed. I wasn't suddenly afflicted. I had been for a long, long time. I just didn't know it. It was still tough to wrap my brain around the diagnosis though. But, NOW I could do something about it.

As for the relief, here are some of the symptoms that, while seemingly unrelated, were suddenly explained by this diagnosis:

  • Irregular menstrual cycles
  • Horrendous cramps, PMS, etc (worse than any of my friends, and I'm not a lightweight when it comes to pain..)
  • Oh, yeah, speaking of weight, though not light... Weight gain. And difficulty losing it. 
  • Migraines (sure, my mom gets them, so maybe they're hereditary, but who knew my ovaries could have anything to do with them?)
  • Hirsutism. Or whiskers. Yeah, those pesky things that even 4 years of electrology didn't even slightly help, and one of the primary reasons I got made fun of in high school.  I remember the comments and sneers, even to this day, and long for a retort. Still haven't thought of one, almost 20 years later. Still stings-- being ridiculed for something I really couldn't figure out how to control. To this day, I spend about an hour a day plucking facial hair. Ya. Hoo. It turns out, it's a good thing I'm not a lightweight in the pain department. Some people can't handle plucking. Or electrology. 
  • Cystic Acne. Another thing that doesn't make you popular, and another thing that it turns out I couldn't have controlled, no matter how hard I tried. At 32, I still have it (though admittedly to a much lesser degree than what plagued me in high school, junior high, and, oh, yes, ELEMENTARY school)... Because I still deal with it, I find it extremely humorous when someone compliments me on my skin. I do have amazing skin care, supplements, and make-up products now, though, which makes a HUGE difference in what people see. That, and I'm a hermit. If they don't see me, they don't see my whiskers and zits. 
Random Senior Picture, just for the fun of it. 
Some of the other things PCOS causes, but I have yet to develop (and therefore have yet to be made fun of for having):

  • Heart disease
  • Stroke (which already runs in the family)
  • Depression
  • Cancer
  • Insulin Resistance, leading in many cases to Diabetes
  • High blood pressure
  • High cholesterol
  • Infertility
Back to me. Because that's how this post is going to roll.. There are varying studies that show a link between early development/puberty and PCOS, but nothing that shows causality, at least that I've come across-- whether one causes the other, or vice versa. It just seems that those of us who developed freakishly early (something even adults made rude comments to me about, when I was in elementary school... no question where the KIDS get it, if grownups are jerks... It's called acne. Deal with it. Yes, I know I'm in 2nd grade. Yes, I do need to be wearing a bra. Jerk. Glad I didn't respond that way, then. I was more confused by the comments and questions than anything, then. Now it makes me mad that people could be that insensitive to a little kid.) also often get the added bonus of having psycho ovaries. Woohoo! (Yes, I know that was a really long parenthetical rant, and you probably had to go back to the beginning of the sentence to figure it out. I'm sorry.)

Let me explain to you how I got the diagnosis in the first place. I was living in Arlington, VA, and read a magazine article that was talking about reproductive health. It had an inset box that showed symptoms and potential causes of the symptoms. I looked at one of the sections and said, "Wait a minute. I think that's me." It had never occurred to me that these things might have a link, much less a cause, unified or otherwise. It was just normal for me. I didn't know it wasn't normal for everyone. I didn't know that other people didn't fight with all of this stuff, well, except the period misery, perhaps. I knew there were other girls who didn't have that trouble, but I figured it was just a continuum of misery, of sorts, and that I just landed at a different place on the continuum. Apparently, it had never occurred to my doctor to look for a cause. 

So I researched. Everything I could get my hands on about PCOS went with me, back to Leawood, KS to the doctor group I had been seeing for 12-15 years or so. I laid it all out for the doctor, with everything that matched my medical history and symptomology highlighted, and asked her to see if this was a valid diagnosis. She basically shrugged and said she could order an ultrasound to find out. Turns out it was. Turns out, they had the equipment in the office, and it also turns out that I could've had this diagnosis for a long time, as well as a treatment plan. 

The doctor gave the diagnosis, and I explained to her that my research showed that normal treatment for PCOS was a combination of metformin (generic of Glucophage-- a diabetes medication, off-label use) and low-dose birth control pills. Another shrug, and the prescription pad came out. 

I've never, in the 6 years since my diagnosis, had a doctor sit down with me and educate me about this disease, or its treatment. For the most part, it seems I've known more about it than the doctors. Sad, eh? I say seems, because the doctors act like they don't know the answers when they ask me questions about PCOS and I tell them about the studies on PCOS women, treatment, etc., as well as my own experiences. Perhaps they do know, but it takes less time and effort to talk about it when they see I've done my homework. Of course, I've taken the time to educate myself, so there's that. 

This post is getting extremely long, so I believe I will make this a series. Part 2 (about treatment/cure), coming soon. Part 3 will probably be about living with PCOS and what it means for ongoing health/life issues.

Much Love,

No comments: