My PCO & PCOS Misdiagnosis

 PCO Story & The Phantom Period!

At 18 I decided to go to the Dr because i had awful irregular periods,
I was at the end of my tether with it. I had 5 years of just heavy long periods that would usually be every 3 months and last for 12 /13 days. I remember as soon as I mentioned this to my Dr he said straight away that it sounds like PCOS. I had no idea what PCOS was or what it meant, I’d never heard of it before. I thought oh gosh am I sick.Once he had explained quite vaguely and printed out a sheet explaining about PCOS I immediately thought “well that’s it, that explains why I have such awful periods.”

I was sent to the hospital for a blood test and ultrasound scan to check for PCOS and others things such as hormone levels..

I remember the first thing the Dr said was THE PILL, The contraceptive pill. At that age I thought the pill was just for contraception, I didn’t know that it could be used for heavy periods or even acne. At 18 I wasn’t overly sexually active and always used protection anyway, so I wasn’t sure about the pill, but as soon as he said it will make your period a lot lighter, and every month, of course I said yes!

Looking back, he didn’t explain what the pill was or how it worked or even what it does to your body! I think that is appalling. I certainly wish I wasn’t on the pill for so long and that I had never on it at all.

The pill essentially tricks your body into thinking it is pregnant, which is why you can have unprotected sex and 99% not get pregnant because your egg cannot get fertilised, it stops you ovulating! Which for someone with PCOS thats not what you want as ovulation can be harder in the first place. Your monthly “periods” aren’t periods, they are actually what they call “breaks”. A break of bleed or what I like to call a fake period.  So you take the pill for 21 days and 7 days of that you have your break “period” and then after your 7 day break, you continue your next pack of pills..

I just think that it should be explained better to girls, it seems so easily given out, like a pack of sweets. A quick fix. A here you go and shut up kinda thing.

My body has changed so much since I was 18. I wish my body could have just been doing what it naturally wants to instead of giving me fake periods and changing my hormones, WHICH in the end I didn’t need to!I will get into that in a sec…

I’m now struggling with my periods because of all the years taking the pill.

I was first put on Dianette for a year then put on Yasmin for another but wasn’t happy with that so I changed to a different pill which I cannot remember the name of, then finally put on leostrin for the last 4 years.

Back to my scan…I remember having to drink 2 pints of water and waiting in a room full of pregnant women feeling very awkward and needing to pee so bad. Once called in, the lady had me lay on the bed, she put jelly on me and started to move the camera around to see my ovaries. I can’t remember in full detail as it was back in 2008 but I remember her saying one ovary was larger than the other and that I had cysts on them which looked like PCOS.

I can’t remember what my blood test had shown but as my scan had shown larger ovaries and cysts, then seeing my irregular periods, the Dr added that up and said that it was PCOS for sure that I had.

So, since the age of 18 I had been on the pill and always thought I had PCOS. For the past 2 years I had been thinking of coming off the pill as I was just sick of taking it. I also wanted to start thinking of children and knew it could take years for that to happen so the sooner I’m off the pill the better. The only thing stopping me was the thought of, one, not knowing when my period would start, and two, have heavvvvvy periods again. Heavy as in turn on a tap heavy. Yep.

I got food poisoning at the beginning of Feb 2017,age 26, just days before my 27th birthdayand thought that’s it, this is my time to stop taking it. So I did. I stopped. Since then it has been almost a year! None of the pills I was on gave me side affects, in case you was wondering.

During that year of not taking the pill it took me 6 months and 19 days to have my first period. I’d never been so happy to have one! It lasted 13 days and was quite normal. It was then another 46 days and my second period started. Again quite normal and lasted 12 days. I remember this time I had bad spots on my chin a few days before it started.

I then had my third period 57 days after that. This one was normal too but a few heavier days. This lasted 13 days. 2 days after it had stopped I started to get spotting of dry blood as it was dark in colour which I found odd. It kept going on for days and every so often I would see fresh blood, like a period was starting.. This continued for a few weeks. I was worried as I had just had my period so why was I continuing to bleed after it. It then got the point of being a full on heavy period, which was just awful. The phantom period.

Overall I was bleeding for 46 days!!

During that time I had gone to the Dr and asked to have blood tests and a scan. My blood test came back saying I had Folic Anaemia, which explained why I was so tired all the time and weak. I had to take folic acid tablets for 2 months and was told not to get pregnant in case of my child having “Spina Bifida”..

My hormones came back as fine, so I personally think that for years they probably were fine but I was taking the pill to “correct” something that didn’t need correcting. My iron levels came back fine, she said I had rich blood. Everything came back fine apart from the folic acid.

My scan result is what came back to diagnose me as PCO not PCOS.

PCO meaning polycystic ovaries.

I had an external and internal ultrasound. The lady said I had “bulky” ovaries with lots of follicles suggesting PCOS. “Biochemistry advised you haven’t got PCOS but you have got ovaries that say you have”. Basically meaning that my ovaries suggest I have PCO but I dont have the syndrome. The new Dr that helped me the past couple months did keep telling me that I didn’t look like someone who has PCOS. I don’t and have never had acne, overweight or weight issues and have never had excessive hair growth i.e a beard or hairy back.. like a man would be hence the male hormone that ladies with PCOS tend to have more of. My blood test didn’t show abnormal hormone levels.

So I have PCO but not PCOS. Two very different things!

I believe I was misdiagnosed and could have avoided a lot of things and worries throughout the years.

I strongly advise anyone going through this to tell your Dr and make sure you aren’t misdiagnosed too. I also didn’t know until the past month that I have been diagnosed with PCO that it even existed!

Every time I tried to look up PCOS and peoples experience with it, they always said how overweight they were and all these things I simply couldn’t connect with, and now I know why!

Let me know your thoughts and any questions! Either tell me in the comments below or tweet me at VParry_

I know this is super long but it wanted to give as much detail as possible.

Once i start trying for children I would love to know if you want me to keep you updated on it or not.

Thank you for taking the time to read this. I hope more women can be aware of this and tell their stories too or even just advice 🙂

Paresa x



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