Thursday, September 17, 2009

"The Long Duree" - My PCOS, Then, Now, and the Bigger Picture

"Hi. My name is J, and I'm stubborn."

Stubborn to the point of detriment at times.

Okay... often.

There is perhaps no greater example of this than the way I've treated my PCOS.

I haven't discussed this much in this format, so I'd like to include the following disclaimer right off the bat.

Disclaimer: The following blog is snippet of an intensely personal, long journey, and worthy of a comment or two. I strongly encourage all followers of this blog to read the article linked several times in this blog. I was only lacking TWO symptoms listed here.

I haven't really discussed it much on this board, and I don't intend this to inspire pity in anyone. PCOS is highly misunderstood. Even many physicians believe it isn't a problem unless you're trying to get pregnant. But I would bet just about any woman who's had to face this would probably disagree.

As anyone with feet knows minimizing something like a hot spot, can result into a bigger problem later on - for example, ignoring a hot spot may lead to a blister. Ignoring that, may lead to an infection.

So I'll try to sum up my story, and what I've learned for this unique challenge in my daily life.


I was diagnosed in 1998, a few months after graduating from high school. I had been one of those "early bloomers" that had struggled with serious weight and depression issues for most of my younger years. They all seemed to get more under control as I aged, but in truth, I think I just got better at coping with and hiding them. When a problem did pop up (such as abnormal hair thinning, growth of hair in unwanted areas, or an obvious bout with serious depression, insomnia, or serious cyclical cramping), it was dismissed as "a phase".

But at 18, the "phases" hadn't really stablized like one would have expected. In fact, they seemed to be getting gradually worse, but still, we did think anything was really "wrong" with me physically.

Towards the end of this year, I was slated to get my wisdom teeth pulled. I first saw an oral/maxill/facial surgeon, but he wouldn't operate on me. He suspected my thyroid was off and sent me to my Family Practioner to get that checked out. I sat with the Family Practioner and we talked but I inisited nothing was wrong - figuring that I could hide the symptoms from her as I did from everyone else.

In fact, that first visit, I succeeded, and she ordered some lab work to check my thyroid.

Test results came back proving that was normal but my testosterone was high. WHAT?! I went back to discuss the results with the MD. This time, I think my mom (being suspsious that I wasn't being entirely open with the MD about what was going on with me) suspected that I was pulling the wool over the doctor's eyes, and she came in the room with me. Being my mom, she knew just the right questions to ask and buttons to push and BOOM! There is was. I was sitting on the doctor's table in tears. Once that dam broke, I was barely able to hold back sobs as we talked about all the things that were going on - things that made me feel like a flawed woman.

She sent me to an OBGYN for a closer look.

After still more tests - there it was - plain as day on the ultrasound screen. Ovarian cysts all over both of 'em, and a growth the size of my fist where it definately shouldn't be...

We took a conservative approach and I was started on medication.

Not just any medication - "the pill". Turns out the hormones in them actually can help balance out the symptoms of PCOS, though there is no cure available in the United States for this at this point. (Yes, even removing the offending body parts does not negate the symptoms once they have taken hold. It's a mysterious systemic illness.)

Thankfully, it helped. And I'm actually impressed with my level of maturity/responsibility at that age. I still "waited" until I got married, several years later, despite unwanted pregnancy not being a threat.

Fast forward to 2005 -
By this point, I'd been married for about 4 years and was hoping to start a family via adoption. I stopped taking the pills leaving the more natural way as an option for my then-husband and I. Well, an adoption fell through, the natural way didn't work, and the marriage quickly started collpasing.

Fast Forward to 2006 -
Figuring I didn't need the pill anymore since I was doing so well, I stopped consistant treatment.


PCOS is one of those things that can sometimes disappear, but in me - well, it hadn't. It's the sneakiest thing because it creeps up on ya. Symptoms start appearing slowly over time and gradual changes are easy to explain away and ignore - like that little hot spot a runner might get. "It's just a hot spot. It's nothing." But further down the road, given more time, you're dealing with a full blown blister.

The next 3 years, I began struggling once again with some "hot spots"- mainly indecision, insomnia, weight problems, etc... are seeing where this is heading?

I'm realizing I should never have stopped taking the medication. So today I'm working on getting back on track with that therapy. I realize I was stupidly stubborn because I decided I didn't want to take "medicine" every day. However, I seem to have no trouble taking supplements daily. The difference? Taking medicine means admitting I have a condition that I can't control on my own and I need help.

Silly thing to be stubborn about, huh?

The Big Picture:
IF you've done your homework and read the article linked to above, you see how PCOS is one of those things that effects almost every part of my life in some way. However, let's take a bigger step back.

While I have no gratitude towards this unique challenge, I see how it's made me grow as a person. It's made me face so many of my fears w/o giving me an option not to. It's forced me to find creative solutions to difficult problems, and to not base my self-esteem on things like what kind of condition my skin or hair may be in. It's forced me to focus on "health" over "beauty" and encouraged me not to judge others by the "beauty" yardstick either.

So the bigger picture is -
This may be a strongly defining factor about me, but it's not going to stop my growth or forward motion. It's just one tree in the forest of my life. And, as I face going on medication that will most likely make me ill for about 3 months while my body adjusts again, I find myself assured that somehow I'll be just fine.


  1. You're absolutely right, and while PCOS is something you have, it does not define who you are. Good for you for being stubborn enough to put aside your stubborness and take care of you.

  2. I'm sorry to hear about your struggles with PCOS. It takes a lot of courage to write about the ups and downs of your medical issues - and thank you so much for sharing. Please continue to take good care of yourself. For me, I am reading your post at a good (?) time. I am facing some female-related medical problems, although they don't know yet what is wrong with me. It is agony waiting to find the answers. And I have resisted taking necessary tests for a long time, mainly out of fear. I am quite stubborn too, like you, but I have realized that health has got to be put first at whatever cost.

  3. Although you confided this to me quite some time ago, we don't discuss it much at all. So I was pleased to read this, not pleased by what it's doing to you, but pleased that your talking about it. It can be very therapeutic. You're definitely pursuing the right avenue of wellness.

    We love you and miss you too!! Come visit us brat! ;-)