Health · Life

My PCOS Story

I’m just going to say up front that this post involves discussion of women’s health, including and especially menstrual cycles. If you’re uncomfortable with this topic, please feel free to skip this post.

I know, if you’re a relative of mine, you’re wondering what the heck I’m doing talking about my period on the internet for. I get it. If my experience was a normal one, I wouldn’t. But I’m dealing with something kinda sucky, and to make matters worse, I don’t know anyone who has dealt with this exact thing. While I don’t think there should be a stigma around women’s bodies anyway, I think not talking about things like this only makes it more isolating. So I hope in some small way to help someone either now or in the future. I prefer to think of this as brave, and less crazy, but it’s okay if it’s both.

About seven years ago, my periods started to get a little bit wonky. I was never super good at tracking them, but they started showing up a bit later than they should, maybe not lasting as long as seemed normal, stuff like that. I didn’t stress too much about it, because hey, not getting your period is like a get out of jail free card.

Then it all bit me in the butt starting in August 2013. For context, I was dealing heavily with anxiety and depression at the time, and part of the manifestation of my anxiety is a fear of doctors. I hadn’t been to see one in seven or so years by that point, and who knows how much longer I’d have gone if my body hadn’t thrown me this curve ball.
I started bleeding, and then I didn’t stop. It would seem like it was on the verge of going away, but then come back with a vengeance, bringing with it substantial clots. After about a month of dealing with this, I accepted that it wasn’t going to stop on it’s own, and I needed to suck it up and call a gynecologist. But due to my anxiety, it was a very difficult process. I found a specific doctor whose online reviews said that she was kind and non-judgmental – and I needed that. So I called up to make an appointment the day after labor day. The first opening they had was two days before Thanksgiving. I was horrified, but took it.
I figured there was no way I could bleed all that time.

I bled all that time. By the time thanksgiving rolled around, I was an emotional and physical wreck. Should I have called every gynecologist in the state until I found one who could get me in sooner? YES. But this is why I throw in the context of my anxiety. I was paralyzed by fear of what was going on, fear from the fact that I didn’t know anyone who’d had this happen to them, and fear of being harshly judged by a doctor.

To be fair, when I did finally get in to see the doctor, she was very nice. I just wish I hadn’t had to wait that long to see her.

They ran bloodwork on me, did a physical, and did an ultrasound. They told me that I had pcos, and that I was unlikely to be able to have kids without medical intervention. As far as the bleeding went, they proposed putting me on birth control, with the caveat that I shouldn’t come off of it unless I wanted to try and get pregnant, because my hormones would be fine for a while, but then would get out of whack again and I’d be in the same boat.

There’s a thing when you’re on medicine for depression and anxiety where, after a while, you’re convinced that you’re fine, that you don’t need the medicine, and that maybe you never did need the medicine at all. You’re feeling great, so you don’t take it. I experienced something similar with the birth control. It put my house in order, so to speak. Only, if you look into how the birth control pill works, it’s not really fixing anything. It’s putting a bandaid on the problem, at best. You’re not fixing your hormones so much as turning them off and relying on synthetic hormones and having a pill bleed every month to make you feel like your body is normal. I became uncomfortable with that knowledge.
I was also uncomfortable with the fact that I never got tangible data from my doctor. She told me that I had pcos, but she never told me exactly why. (IE: You have cysts plus your estrogen is sky high and your progesterone is low, etc) I began to wonder if I really had pcos, or if something else had triggered the bleeding, and as long as I was on the pill, I had no way of knowing – you can’t test your hormone levels when they’re being replaced by synthetic versions.

So I talked it over with my current gynecologist. She was fine with my plan, and didn’t see any reason for me to worry about the bleeding problem happening again. I was still a bit nervous about coming off of the pill however, and wanted to take my time with it.

A week later, I went to Michigan, and came back with a blood clot in my leg. I don’t know if you know much about blood clots and birth control, but those things generally shouldn’t go together. Birth control puts you at a higher risk of having blood clots, and once you’ve had a clot, you’re substantially more likely for a repeat. I had lucked out with a minor clot, but not really knowing why it happened, the best course of action seemed to be to ditch the pill immediately.

Initially, I was pretty pleased. My period came back right on schedule (some people don’t get theirs back for six months after coming off the pill, and I fully expected to be in that boat. I admit, I was a little disappointed), and it even seemed like I was ovulating on my own. The reason I say that, is because right around the appropriate time, I’d get some pain in my ovary region, and it would bother me off and on until my period hit. It was weird, but it as seemed like an indicator of my body working properly, I wasn’t too worried – I was just going to bring it up at my next gyn appointment in the spring.

This winter, I stopped getting that pain, and then noticed that it wasn’t as clear cut whether I was ovulating. I feel the need to stress that, even if you aren’t planning on getting pregnant, having a properly functioning reproductive system is a good thing, as it is an indicator of your overall health. (I recommend The Fifth Vital Sign as a resource on this.)

Then my period disappeared altogether, right as the pandemic picked up steam. I thought, hey, maybe it’s pandemic stress. Just because I wasn’t feeling particularly pandemic-stressed didn’t mean that my body wasn’t.

When my period finally showed up, something in my gut said this isn’t right. It didn’t follow the pattern that my periods generally do when they’re in good shape. I gritted my teeth and hoped the bleeding would go away.

It hasn’t. As I write this, the bleed switch is stuck on again, and trust me, I’m disappointed. I had hoped that I’d never have to go through this again, but here we are. I had my normal gynecologist appointment scheduled for the end of June, but I decided to go ahead and call to see if I could get in earlier. Much to my (and the receptionist’s) surprise, they had a cancellation for Monday. After my experience of waiting three and a half months, I was shocked.

I realize this would be a much better if I could wrap it up with a neat bow instead of leaving you all hanging where I’m at, with all problems and no answers. But given how the human memory tends to re-write itself, I feel like being honest in the thick of it is more beneficial. I don’t want to come back in a couple months and say it wasn’t that bad, because I want to tell you, this stinks.

When it’s “not so bad”, it’s merely a minor inconvenience. But the last several days in a row (and boy do I hope I don’t have to find out how long this is going to be true) have been pretty gnarly. If you google “when to call a doctor about heavy periods”, I’m pretty full on that checklist. It’s unpleasant, and kinda life interrupting to be running back and forth to the bathroom. Not to mention the fact that I’m pretty sure I’m heading towards anemia again if not there already. I just don’t feel well.

What frustrates me about all of this is that I can’t find much in the way of consolation on the internet. I don’t know anyone who has gone through this personally, and google seems to have a general shrug emoji on the subject. I don’t know what to expect going into the doctor, because we can’t (or shouldn’t) just slap the birth control pill on it and call it a day. I’m not saying I wouldn’t go that route, but I see it as a last resort. I don’t know what my options are, but I’m hoping there’s at least one that walks the line of modern science and taking care of myself.
I also really want to know, in as much detail as they’ll tell me what on earth is going on. This isn’t a car or a house, where I’m fairly content to hear a generalization and pay you to fix it. It’s my body, and I have a vested interest in knowing the details.

As someone who really likes silver linings, I’m hoping that at the end of all this, I have a functioning body, a boatload of answers, and can help others find answers and advocate for themselves in the future.

Until then, take care of yourselves, and I’ll do my best to do so, too.

One thought on “My PCOS Story

  1. That’s so frustrating and scary! Definitely haven’t had that experience, but I’m in the process of getting tested for PCOS and some other things myself because of wonky periods.

    Have you seen an endocrinologist? My gynecologist actually recommended it to me because she thought I might have Hashimoto’s due to my thyroid levels, but the endocrinologist is now looking at a wider scope of things including PCOS given the period issues. It’s so stressful not to know what’s going on with it all.

    If you ever want to vent, I am totally here!

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