PCOS – Life Beyond The Diagnosis

This time last year I was diagnosed with PCOS, or Polycystic Ovary Syndrome for anyone not up to date with their women’s health jargon. For those of you who don’t know what it is, lucky you. It pretty much is what the name suggests – cysts on your ovaries. For those of you who do know what it is, you will know that cysts on your ovaries are only part of what PCOS actually is.

I am writing this post for anyone out there who is curious about PCOS but also anyone out there who was just had a diagnosis and feels like it’s the end of the world. I know that’s how I felt when I found out, anyway. All I knew of PCOS was that it affected fertility and I was heartbroken. I remember holding it all in as I walked out of the hospital, then sitting in Jack’s car and crying like my life was over. But that isn’t the case.

We don’t talk enough about periods or reproductive health or our bodies so when things like this are diagnosed, you’re left feeling scared, alone and like things will never be the same again. Hopefully this post can help change that a little and reassure anyone with PCOS that it will be okay.

A brief history of my diagnosis

My periods were never really regular. They were heavy and painful but never like clockwork like some of my other friends. My friends seemed to know to the hour when they would start and could always prepare, whereas I was usually within a week or two of a usual cycle.

When I was sixteen, I had two episodes of ovarian cysts. The first one had me waking up in the middle of the night in agony. I was in the most agonising pain, sweating and terrified. I woke my parents up and told them I thought I was dying. It turns out I had a cyst that had burst. I was told that the pain of a burst cyst is similar to labour pain so anyone who has gone through childbirth and endured that pain for hours on end I salute you.

To help regulate my periods, I then went on the contraceptive pill. I was on the pill problem free for about eight years until out of the blue I had horrific headaches. I went to the doctor and came off the pill completely to give my body a break.

I had two periods after coming off the pill and then… nothing. Nothing for about six or seven months.

I went to the doctor again who prescribed me a hormone tablet to induce a period and then was sent for an ultrasound. I remember reading that I had to have an internal ultrasound and crying. The procedure sounded painful, invasive and embarrassing, but when it came to it it was nowhere near as bad as I thought. The woman who performed the ultrasound was so lovely, chatting to me, keeping me distracted and explaining what she saw. It was nowhere near as bad as I thought it was going to be and the ultrasound appointments I have had have always been the most informative.

From the ultrasound and a blood test, I was diagnosed with PCOS.

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What treats PCOS?

There is no cure for PCOS. Some people are on the contraceptive pill, others are not. Once I was diagnosed, I tried three different contraceptive pills – one which made me gain one stone in a month, which was fun – but in the end I decided to come off of everything. I felt like my body had been using pills and hormones for too long and I wanted a break, so personally I am on no form of medication at the moment for my PCOS.

There are lots of things that people say can help PCOS, like regular exercise and a Mediterranean diet. Some people with PCOS gain weight easily and struggle to lose it. For me, I have found it hard to lose the extra weight that I gained because of the pill I was put on, but I am not unhappy with how I look at the moment so I am continuing to stick to my vegetarian diet and taking long walks as my form of exercise.

What does PCOS look like?

PCOS isn’t the same for everyone so I can only explain what it has been like for me.

My periods are irregularly regular – awkward as I like to call them. When I do get a period, I tend to find the first two days are the most painful. Nothing that a hot water bottle and ibuprofen can’t fix, but still not fun.

Most women with PCOS have unwanted or excess body hair, which I do – I feel extra lucky that I am dark haired so these unwanted hairs really do show up! The place you want hair to be – on your head – is a place you actually loose hair if you have PCOS. My hair at the sides of my head isn’t as thick as I would like it to be and poor Jack’s clothes often look like a cat has malted on them, but what can you do?

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Some people with PCOS experience really bad hormonal effects, but mine don’t seem to be too bad. I tend to find that the day before my period my mood is really low and weepy and generally I get a splitting headache – and I mean splitting. It feels like my face has been cut in half with an axe. I am probably the least fun person to be around at that point in time, but I usually try to sleep it off.

I found out recently that you can have insulin resistant PCOS which can lead to problems such as diabetes. My most recent blood tests came back normal so this is not the case for me, but it is something I am happy I am aware of because it means I know to keep an eye on my diet.

What is your PCOS like now?

Eventually, I got into a rough rhythm with my periods with my cycle starting between every 28 to 38 days for about eight months. Recently, I skipped a period and had to have more tests here in Australia. I saw on the ultrasound that I have 26 cysts on my left ovary and 28 on my right – anything over 25 cysts counts as PCOS. Everything is now ‘working’ again, but I still worry about skipping periods as I know that this is very probable.

What does the future hold? 

As part of my ‘why haven’t I had a period?’ run of tests, I had an ultrasound and met the most wonderful medical professional who talked through my PCOS and any future plans to have children. Whilst PCOS does effect fertility, she told me that having a period was usually a good sign and that for some people with PCOS it can be as simple as using at home ovulation test kits and planning their ‘routine’ around that.

Failing that, you can have hormone treatment to promote ovulation or IVF. She explained to me that PCOS isn’t a never, it’s not the end of the world and it is something that many people have whilst still being able to have a family. I wish I had been told that at the time of my diagnosis and it is something I wish more people knew about PCOS.

For me right now, the future is mostly just keeping track of my periods, monitoring any health changes and keeping on taking care of myself as I am. I know that if and when Jack and I decide to start a family I will have to look more closely at my options, but for now being off of pills and letting my body be natural feels what is best for me.

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So there you have it – my PCOS ‘journey’! I am not an expert on PCOS and there are still things I should probably know about it, but for now I am happy to know what I know and live my life accordingly.

If you recognise yourself in anything I have written or have any symptoms like missed periods, all I can say is go to the doctor – it’s never as bad as you think, even the internal ultrasound!

If you have PCOS And want to share your story or want to know anything else from me, don’t be afraid to leave a comment or get in touch with me.

2 thoughts on “PCOS – Life Beyond The Diagnosis

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  1. I too have PCOS. And it is a struggle. I just try my best. Eat healthy, do yoga and monitor my body. I feel like the weight is the most annoying part. I am not obese, but for my liking I am overweight. Just try to stay positive. Thanks for sharing your story.

    1. I have heard the exercise like yoga and Pilates is what is best for PCOS rather than things like running, do you find that to be true?

      I find the weight I have gained hard to accept just because I was always one size then suddenly because of a pill I was put on I wasn’t, but you’re right to say try to stay positive. It is all we can do

      Thanks for sharing yours too – I know PCOS isn’t something people really talk about openly so I really appreciate this comment 😊 💕

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