PCOS Is Not My Friend: The Cycle

It's been a few months since I wrote about how I was faring since my PCOS diagnosis. It's sort of interesting, because I'm writing about my experience with it from a non-TTC point of a view; most of the research I've found online so far have been through women who are struggling with the infertility aspect of it. Since I'm not up to that stage yet, I'm focusing on it from a health perspective - particularly on some of the symptoms that I've been experiencing since the diagnosis, as well as some that I had potentially experienced before it as well.

If you're not keen on reading about lady-cycles, periods and all that jazz, I recommend skipping today's blog post.

The biggest symptom for me, and the one which led me to the doctors knowing that something definitely wasn't right, were my periods - or lack thereof. When I was younger, I never had a regular cycle, it would come and go whenever it liked, and I would experience really heavy bouts of bleeding and cramps that would leave me bedridden at least once every month or two. It was for that reason that I was put on the birth control pill at a fairly young age {I think I was 14?} and had been on it ever since.

Being on the pill was something I grew up with, and I never really had any problems with it, but back in 2008, my supply was running low and I decided to stop using it. I'd been on it for such a long time that it was only to be expected that getting a 'natural rhythm' back to my cycle would not be the easiest thing in the world, so I was patient. I waited. And I waited. And waited some more.

My first period after stopping the pill was long and painful - a good few weeks worth. It was awful. After that, the same mess started again: months of waiting for one to arrive, followed by weeks of feeling like death. That continued, until I was back home & went for the blood tests and pelvic ultrasound which found the cause.

It's kind of ironic, isn't it? When I was younger, I didn't mind missing a period - who wants to deal with that anyway? And now, I'm praying for a more regular cycle and find myself getting disappointed when the 'normal' timeframe comes and goes, yet again. And then, when the time comes for us to start actively trying, I'll be once again crossing my fingers that my period WON'T arrive, to show us that we've managed to fall pregnant. It's a vicious cycle.

I was diagnosed in April. I've been on Metformin tablets and I've been working on weight loss - two things combined that are supposed to play a major part in having a more regular cycle and monthly ovulation. At its worst, my cycle was around 90 days long. For most women it's between 24-35 days. I've been tracking myself since last year, and my current average cycle length has dropped down to 73 days. It's still well, well over what it should be. Since April, I've had my period twice. I'm currently waiting on one, and am on day 48 as we speak. If you go by the average, my next period isn't due until October.

I feel so disappointed in myself as a woman. I always used to know something wasn't quite right, but when they stuck a label on me and released me into the wild to do my own research, the severity of it really hit home. I never used to know enough about ovulation to care about what it is or when I experienced it - and now, I'm twenty-six and petrified that things still aren't working. I use a program on my iPhone that helps me track my cycles and at the current average, it's forecasting that in 2011, I'll have 4-5 periods.

I read somewhere that a healthy fertile woman only has something like a 25% chance of everything working at the right time and a pregnancy resulting in each ovulation cycle. At this rate, I'll have less than half of those opportunities; which is a scary thought. I know you might think I'm being ridiculous being this worried now, when we are not even trying for a baby right now, but I can't help it. I'm a worrier, that's how I roll.

I'll be blogging more about this over the coming weeks (possibly even months/years!) but I always like to hear feedback and advice from fellow bloggers, if you have it. Hopefully I'll have more positive things to say as the journey progresses, as it's only really been five months since I was officially 'diagnosed' with the syndrome. I hope the statistics become more promising as the months continue. And at this point, I'll continue tracking everything until I'm back home in Sydney in December for my follow up appointment - and we decide what happens next.

Coming soon in the PCOS chronicles, the other joys I've experienced so far. Are you ready for this?

17 Comments • Labels:  


Fiona said...

I'm ready and I'm curious.

Before I went on the pill, from period one I had regular cycles. 26 days. Which sucked, cos it meant I fit an extra period a year in!

They were heavy and awful.

The pill is my saviour. Don't want to think of going off it.

I don't have PCOS. At least I don't think so. But I have a screwy body, so like to read baout how others deal with their screwy bodies.

Becky said...

Thank you so much for sharing this with us. I've seen more and more women diagnosed with PCOS, and I just read an article in Glamour about how PCOS and endometriosis are the two most undiagnosed things among women.

I've read a lot about PCOS and I'm sure it's hard for you to talk about it - but I'm so glad you are! You're making women aware of this and maybe that will help someone else realize a diagnosis as well. Know that you can be frustrated here, or happy, or sad. This is your blog and we read it because we love you and how real you are.

Operation Pink Herring said...

I haven't been diagnosed with anything, but if my period doesn't return to normal within a few months, I have an appointment to run several tests. I went on the pill when I was about 18 to regulate my period and had been on it for ten years. I went off in may to see what would happen, and I've been having lovely 70-90 day cycles, which is about how I remember things being in high school (although I never kept track then). It's nice to hear that I'm not alone!

Amanda said...

I can empathise with all of it-- the completely screwy cycles (I've only been off the pill for a few months, and I'm kicking myself for not remembering when I stopped- May, perhaps? Maybe if I go back through your old posts on PCOS, I'll find the comment I remember writing about going off the pill in a few weeks), I've always been all over the place- 5 months here, 2 months there, 4 months the next time.

I'm slowly working towards getting back to doing the things I can to help it, mainly the weight loss.

I'm GLAD you're writing about when you're not TTC- it's so hard to find info about it when you're not looking at trying to get pregnant.

Jess said...

I'm so so glad that you got a diagnosis! PCOS is incredibly underdiagnosed and lots of women who experience these symptoms are often just dismissed by their doctors as being overweight and needing to shape up in terms of diet and exercise. If this particular medication plus your fantastic weight loss don't do the trick, hopefully there will be other things your doctor can do to help now that they know what the problem is.

Erin said...

I think it is so awesome that you are sharing this. It's especially interesting to read from a non-TTC point of view. PCOS and endometriosis (what I have) are so, so often undiagnosed, and it's just terrible. Women so often have to suffer through years of trying to get pregnant or tons of pain before anyone gives them a diagnosis.

I don't think it's silly to be worrying about getting pregnant even though you aren't trying. It's a totally legitimate fear. The good news is...you already have a diagnosis, which means that people will take you seriously if you do end up having trouble. You've already gotten a huge first step out of the way!

Anonymous said...

It takes a strong individual to be so outward in sharing this to all of us. Thank you. Stay strong, and please please please do not feel disappointed in yourself as a woman. You are beautiful and wonderful and so much more. It is frustrating but every little thing comes with a reason trailing behind it.


Hannah Katy

Eris said...

First off this quote is unacceptable:
"I feel so disappointed in myself as a woman"

Stop that. Woman come in all shapes and sizes, all types and flavors, and being a woman in NOT NEVER EVER dictated by how your ovulation works or your uterus functions or boobies (ask any breast cancer survivor) or even whether you have children or not. I know you're venting and being honest and sharing but that is a dangerous route to take your feelings and your mind; you can acknowledge that they are there but don't dwell. You are a woman. A full woman. A person. A human peing. And PCOS does not now nor will it ever define you.

The health ramifications of this kind of condition can be overwhelming and depressing (hell, it can actually trigger depression) so I'm sorry that you, or anyone, has to deal with it. But being proactive and informed and keeping on top of it will let you feel in control. Make sure to keep seeing your doctor, or a new doctor, if you aren't seeing the results you should.

Endometriosis, a different condition same area, made my life hell and eventually ruined my fertility, so though I can't ever say that I know what you're going through I can totally empathize. It sucks, I'm sorry, but you're totally okay and going to be okay. And I know it is like a drop of water in a bucket to tell a worrier to DON'T WORRY about fertility but guess what? YOU DON'T HAVE TO. You will cross that bridge when you get there. It will be okay. Look back at all the times in your life when it has seriously, really, been okay. Focus on your health and well being and don't worry about the baby makin' stuffs until you get there :)

The more people talk about their experiences the better the world becomes, keep sharing!

Breathe Gently said...

Thanks for the comments, you guys.

Fiona - an extra one a year, lucky you! ;-)

Becky - maybe by writing about it, people will stop & think about symptoms themselves.. that's a good thing!

OPH - Right there with you on the 70-90 days. Boo! Hope everything works out for you, lady.

Amanda - I hope the weight loss will be what kicks things into place for me. Let me know if you need me to search through blogger for your comment on my end, I can probably do that!

Jess - that's so true! If one more person told me it was just due to my weight, I think I would have snapped!

Erin - I think that's partially why I want to write about it, since there are so many health problems it affects before TTC even begins. Thanks for the kind words. :)

Hannah - Beautiful comment, thank you!

Eris - you're very right; especially since I have a tendency to get worrisome and mopey. The time will come to REALLY worry - for now I'm just doing whatever I can to avoid getting to that stage, if I can. Endo is another awful problem, and I think the more people know about them, the better!

Emily Jane said...

It must have taken a lot of courage to share this with us, and for that I both admire and thank you. I'm sorry you have to go through this. Writing about it I think is going to help you, but also other women going through the same sort of thing - I'm with Erin, the more we share about this, the more supportive we can be of each other.

elise said...

Another round of applause from me - great job writing about this and getting the thoughts and actions and worries all written out instead of keeping them bottled up inside.

Now for my "advice" if you can call it that: I don't have PCOS, nor do I have any other explained fertility issue. My cycles are 24-26 days long. And yet, although I have been pregnant once (obviously didn't end happily), I haven't ever gotten pregnant again yet, despite actively trying. Trying to get pregnant is a hard process to go through, regardless of the "reasons it isn't working", and you are correct when you say that there is somewhere around a 25% chance of everything working out perfectly each cycle. So yes, your "chances to do it quickly" go down TECHNICALLY with less cycles, but you still have that same chance every single time.

All to say, there are many, many girls who grow up thinking "I wonder if I'll be able to have babies once it's time for that". And then, until we actually are holding that baby in our arms, I don't think we ever STOP worrying about whether or not it will work. PCOS diagnosis or not, there are a lot of tricky things that have to work exactly right in order to achieve a pregnancy. And yet accidental babies are born every day. There's just absolutely no controlling it, NO way to force it to happen, and the more you try, the more miserable you'll be.

Conversely, the less you try to control it, the happier you'll be, and almost every study ever done agrees that the happier and more stress-free you are, the better your whole body and all systems work.

So, to wrap it up, try not to worry. Do all the positive, active things you are doing right now to make your body healthier, have J do the same for himself, and then let the chips fall where they may. I know it sounds like SUPER trite advice, but that is why I wrote the short novel beforehand...so that you'll know that however trite it sounds, the advice comes out of truly knowing what it's like to wait and wonder and worry.

xoxo, can't wait for the next chapter :)

Karen said...

Thanks for sharing this.
No experience with PCOS myself though I never had a regular cycle before going on the pill. I have been on the pill ever since (I was 17 or 18 when I went on it) so I honestly don't know what my cycle would be like if I went off it now. The picture is making me wonder whether I should ask my doctor about it but wouldn't I have noticed some kind of symptoms? I have been on the same pill for the past 9 years and not had any issues with it.
I really hope the Metformin works for you and that you will be able to become pregnant when it's time despite the PCOS. And I hope that you will learn not to take this diagnosis as some sort of personal failure. You as a woman are not defined by your ability to procreate. *hug*

steph anne said...

Thanks for sharing - it's not often that someone is open and willing to share something about this especially when it's PCOS.

I don't have PCOS but I always think that there's something wrong with me and PCOS has crossed my mind before. I worry that I won't be able to get pregnant easily when we're ready to try too.

Megan said...

Thank you for sharing this with us. I don't think you're crazy for thinking about all of this even though you're not trying to get pregnant. It's perfectly normal to think about this, especially since you hope to get pregnant one day.

I hope something can be figured out for you so that you don't have to go through the painful cramps!

Tina said...

Hey Aly!

I am Karen's friend and I remember you from way back on the lifehouse forum (I wasn't an active writer but I used to read a lot there).

So yeah I was diagnosed with PCOS when I was 16. I had always had issues with my periods being totally messed up and I had all the side effects like bad skin etc.
So I went on the pill which helped for about 4 cycles and then my period would come and go whenever it wanted. So then my doctor would put me on a different pill. And it would start allover again. I did this a couple of years and I don't remember how many different pills I tried.
One day I decided to just stop taking the pill. It took about a year but my cycles smoothened to an almost regular 30-40 days. It was the best decision for me.

Then last year I went on the pill again this time because of contraception. But after awhile I didn't feel like myself anymore (mood swings etc) so 2 weeks ago I stopped again and I already feel better!
I have no idea how my body will react this time...

I think hormones are what really rule our body and brain. Everything depends on the right mix of hormones. I now try to let my body figure it out by himself.

I totally understand the worrying thing, I do that myself all the time. And what truly worries me is the whole fertility issue. The doctors keep telling me that they know a lot of women with PCOS who never had any trouble getting pregnant. But I am sceptical. And I am 26 which doesn't give me that much time.
So I just wanted to share my story with you and maybe give you some hope that PCOS will not forever be a big issue for you! And never doubt your womanhood! It has NOTHING to do with PCO!

terra said...

Thanks for sharing this! I don't have any experience or advice to share but I think it's really great that you shared it. I also think it makes sense to worry about it now and do everything you can to make the pregnancy process possible now instead of waiting until you're actively trying. Fingers crossed all the hard work you're doing now will pay off later!

Chantel said...

Good on you for sharing, and that's why we are here reading along! I think it's great that you are being proactive about it. Whats the name of your iphone app? I'd like to track it as well. I've had an implanon 3 times running so haven't had normal periods since I was a young teen. I have this secret fear though that I might have trouble having children. Isn't that strange. xx

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