PCOh No… ((Part 1 of a series by CraftasaurusRex))

craftasaurusrex August 7, 2013 0

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This one’s for the LadyGeeks…

Guys, you can read it too, but I’m going to use scary medical terms like “Ovary” and “Hysterectomy,” so feel free to leave the room if that makes you uncomfortable.  If there are any kids that don’t necessarily need to be reading detailed lady-medical info, they should probably head out too.  Go ahead, I’ll wait.

…are they gone?  Ok.  Ladies, I want to talk to you something super important.  Something that affects 1 in 10 women.  Something that might be having an impact on you right now without you even knowing it!  But first, I’m going to give you some personal background on my story.


Growing up, I was never a skinny child.  I never really became “obese” until I was an adult, but I always struggled with weight.  As a nerd, I tended to lean towards more intellectual extracurricular activities, like Orchestra (started playing viola when I was 8), reading (taught myself how to read when I was 4, and used to get in trouble for hiding books in my desk and reading in class), and art (wanted SO badly to be a comic artist).  Sports were never my thing.  I had always attributed my weight to the fact that my favorite hobbies tended to involve sitting mostly still for hours on end.

Then Puberty hit.  (Guys, if there are any of you still around, this shizz is about to get real.)  I developed a lot of hair all over my body (not in the “normal” places if you catch my drift…I have Sasquatch arms), and began my ongoing, nearly 15 year struggle with acne.

My mom always told me that as I got older, my hormones would balance out, and I would be a normal, zit-free woman.  Fast forward to today.

I am an (almost) 29 year old woman who still struggles with horrible acne.  Specifically, cystic acne.  On my back, face, you name it.  The difference between cystic acne and regular acne, is that cystic acne is deeper, gets super inflamed, leaves horrible scars, and no acne treatments I’ve ever tried work on it.  It is awful.  I try to think back, and I know that when I was a teen, it wasn’t this bad.  When I was 19, I got a tattoo on my back.  Something I wouldn’t even dream of doing now, so I know it wasn’t an issue then.  Now, as an adult, I really only wear t-shirts.  Partially because I’m comfortable in them, but also because they hide my scars.  It is depressing.  Paired with the fact that my weight has ballooned completely disproportionately to my healthy lifestyle, it is really easy to get down on myself.

I feel gross.  I am fortunate enough to have a girlfriend whom I have been with 3 1/2 years, and is so supportive, and thinks I am beautiful inside and out.  It helps, but I still struggle with image.  I always felt on some level that I am zitty and fat because I am just a gross person, even though I know logically that isn’t the case.

A few years ago, I developed a huge cystic zit on my jawline the day before Christmas.  I was devastated.  Little did I know at the time, but that zit was to become my saving grace.  On Christmas, my whole family gets together.  There are about 15 of us when we are all in town, and seeing everyone with that thing on my face put me in quite a funk.  An aunt of mine who happens to be a nurse looked at it and prescribed me an antibiotic for it.  It helped, but then later on I happened to casually make a joke to her about my “Man Whiskers.”  I have these 4 persistent hairs (2 on my chin, one on each cheek) that always come in, and are thick and black and bristly like a mustache.  Apparently, that set off some alarm in her medical mind, and she told me to go in and get checked for PCOS, or Poly Cystic Ovary Syndrome.


Just in case you are like me and have never heard of PCOS, here is the “for dummies” version of what I know now.

PCOS is one of those diseases that they diagnose by ruling other things out.  They don’t know a whole lot about it, but are starting to think that it is a genetic disease.   The boring clinical description reads like this: “Polycystic ovaries develop when the ovaries are stimulated to produce excessive amounts of male hormones (androgens), particularly testosterone, by either one or a combination of the following (almost certainly combined with genetic susceptibility.”  Basically, it has something to do with how our bodies process insulin.

Symptoms of PCOS include (Here come more of those words, guys…) Irregular Periods (I’m on my second one this year and it’s August…you do the math), Infertility, High levels of masculinizing hormones resulting in acne (specifically cystic acne on the back and jaw-line) and hirustism (growing man-hairs…my testosterone levels are apparently 10x the low-end of the “normal” scale for women…causing us to decide that I have more “balls” than some men we know hahaha), and metabolic syndrome which is a blanket term that includes obesity, and insulin resistance.  Additional possible symptoms include insomnia, skin tags, thinning hair, depression and anxiety.

If you have PCOS, it means that you will get these annoying little cysts in your ovaries that do crazy things to the rest of your bodies (did you read the symptoms?).  Some women experience pain from them bursting, while others never feel a thing.

Things like diet and exercise can help with the weight, and decrease the severity of your PCOS, but it really does need to be diagnosed and treated.


I had to go to two different doctors over the course of a year to finally get tested.  I literally went in a month ago as of my writing this.  All I can say is, if you don’t have a Gynecologist, ask your friends who they go see.  Get recommendations.  I called a local womens’ clinic, and it took them 3 months to get me in.  When I finally had my appointment, the doctor was wonderful.  I can not gush enough about how great everyone I’ve dealt with at the clinic is.  She listened to my concerns and symptoms, and did my exam, all the while, getting to know me and my medical history.  She scheduled me to get blood drawn for a series of tests, and have an ultrasound the next day.

Yet another great experience with this clinic.  It is out of the local hospital, and their phlebotomist was fantastic.  I am completely terrified of needles.  This was my first time having any sort of bloodwork done, and I nearly had a panic attack waiting to be seen, but the gal who did it was so sweet and really calmed me down.  I can honestly say that getting “loved” on by my kitten hurts more than this did.  She drew 3 vials of blood in nothing flat.

Next was the Ultrasound.  I’m not going through a detailed description of this one, because if you don’t know what it is, I shouldn’t be the one to tell you.  It was an embarrassing situation made better by a consummate professional.  The tech who did my scan said that my ovaries had “a PCOS look,” but that it would all depend on what my bloodwork looks like.  In women with PCOS, the ovaries almost resemble a wagon wheel.

Source: http://www.bubtree.com.au/Fertility-Care/Polycystic-Ovary-Syndrome-%28PCOS%29.aspx

 

 

 

It took a while for my bloodwork to come in.  The hospital that runs the clinic uses an app that lets you see your chart and test results, so as things were coming back, I was able to take my results and compare them to what is typical in women with PCOS.  Mine seemed to fall in line with what you would normally see, so I braced myself for a diagnosis.

The office called me yesterday.  The nurse told me that my testosterone and testosterone-like levels are high. Not so high that they suspect a tumor, but high enough that paired with my  Ultrasound results, they are diagnosing me with PCOS.

Even with bracing myself all this time for a diagnosis, it was so hard to hear.  So many things ran through my mind.  I am going in later this month for a follow-up appointment to discuss treatment and get my cholesterol tested, because that is a risk I now run being a woman with PCOS.  Along with Diabetes, and all sorts of things I’m trying not to think about.

While my logical mind realizes that they will most likely be able to treat me with either birth control, or a diabetes medication, or all sorts of things I don’t know about, my panicked mind (the one that thinks there is a monster in your closet when you are a child) keeps running through all the horror stories I’ve heard about women I know/know of who have PCOS, and had either full, or partial hysterectomies.  My partner and I don’t want kids.  She has MS, and that alone is a lot for us to deal with, so kids aren’t even within the realm of possibility.  Even if they were, I lived with a pregnant friend exactly long enough to know that I never want to give birth.  It just isn’t for me.  Two words: “Mucus Plug.” *shudder* No thanks!  But that aside, I hate knowing that there is a chance my body already made that decision for me.

Two things have helped me get over the crazy depression I felt yesterday after I got off the phone.

1) talking to friends and planning out this article

2)research!  If something scares me, I research the crap out of it, and PCOS terrifies me.  Reading the posts by the gals over at www.soulcysters.net really helped me realize it isn’t the end of the world.

 

If you take one thing away from this post, i hope it is this:  1 in 10 women have PCOS.  If you are Lesbian or Bisexual, your chances of having it double.  If you think that you may have PCOS, find a good doctor, and don’t let them ignore you until you have been tested to your satisfaction.  Be safe, and know that you aren’t alone.

I’ll post updates as I start to seek out treatment.  This is something that should be talked about openly.  The number of women around me that have been affected by PCOS really shocked me.  I hope that this helps someone realize that there is something they can do about their weight.  Or complexion.  Or infertility.  It’s not your fault.

xox

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