Thursday, 17 August 2017

PCOS and Me

The truth of PCOS (Polycystic Ovary Syndrome) is that it isn't the same for everyone that suffers from the illness, and there are so many side effects that you may suffer from. Some women are lucky and won't suffer from any side effects at all, or very few, others may suffer from all of them and have quite a bad time with it. 

I've found that not a lot of people speak about PCOS, even though 1 in 10 women suffer from it. 

My PCOS story began around 2009, which amazingly is now nearly a decade ago, but I didn't know at the time that this was what was happening with me. 

As a women you expect to have a period every single month like clockwork, and as much as we hate it, it's surely better than the alternative, right? My periods began to become irregular, at first they would be a few days late, then a few weeks, then a few months, and at first it was the best thing ever! That was until the reality of it all began to set in, as much as we hate periods, we're supposed to have them so I knew something must be wrong with me. 

It wasn't until 2011 that they began to become incredibly irregular to the point where I'd have one every 4 month, and when they came I'd be in agonising pain. It was then I knew enough was enough and my mum arranged for us to visit the doctors to find out what was going on with my body. I was sent for plenty of blood tests and then even an ultrasound where they looked at my ovaries, and told me that nothing was out of the ordinary. I was told that I was at a funny age and my periods would go back to normal eventually, and that was that. 

Unfortunately in 2015 my beautiful grandmother passed away due to a type of ovarian/womb cancer, and that's the hardest experience I've ever lived through. You might be asking what relevance this has to anything, but imagine everything going on with you physically and then having less than a month to come to terms with your grandmother having cancer before she passes away. Imagine being someone who isn't emotionally strong, every time something majorly bad happens in life it fucks with my mental health, and that's what it did. The stress was unbearable and the effect it had on my life and my mental health is so immense. Then before I even had time to come to terms with this I thought back to all of my problems, some of which my gran had. I went to the doctors and demanded a smear because cancer so clearly runs in my family, and I have so many problems that I freaked. They never gave me a smear, even though my grandmother passed away from these problems, even though I have SO many problems, they would not do it. 

I went 4 years with my periods coming every 4 months, and it was so normal to me that I almost forgot that they were suppose to be happening every month. It was in around July 2015 when I first started my current job that things began to change, the periods got heavier, so heavy that I had to rush to the toilet at least every hour out of fear. 

2016 came around, throughout the last 5 years my periods had came every 4 months like clockwork, then that changed. 4 months went by, 6 months, 8 months...nothing. This is when I had finally had enough and went back to my doctors with determination to find out what was going on, what was so wrong with me. I was in so much pain, I felt like I was going to be sick ALL of the time, I didn't feel like myself.

I was first referred to the Gynecological ward in around August 2016, and I was so nervous about what was going to come from this, but so happy I was trying again to find out what was going on. I went to St. Helens hospital with my fiance by my side and told them everything I had gone through over the last 7 years. I was sent for plenty more blood tests, as well as a transvaginal ultrasound, which I was terrified about. For anyone who's unsure about what this is, it's an internal ultrasound, and it was incredible uncomfortable. I received my next appointment to receive my results on the 7th September, and it was then I was finally told that I had PCOS. I was also told that I had what they presumed a benign cyst on one of my ovaries that they needed to keep an eye on. I was then sent for more blood tests and put on the contraceptive pill to hopefully regulate my periods, not that this helped in the past.

Although I knew I had PCOS and I knew that I had a cyst, I didn't actually know anything about it, but there wasn't time to think because it was time for my first abroad holiday, I was off to beautiful Rome. I made sure to begin my pill (Yasmin Contraceptive Pill)  at the best time to ensure I didn't come on during my holiday, presuming I would have one that its. 
At the beginning of October we returned from Rome and a few days later my period came, thank the heavens! But I shouldn't have thanked anyone too soon, after all I had gone 10 months without a period, why did I think this would just be a standard period? It was agonising, and it was the worst period I have ever experienced to this day. I was filling up sanitary towels within half an hour. The October period actually continued throughout November too and turned out to last a solid 2 months. Both myself and my fiance began to become increasingly concerned at the amount of blood loss. Multiple visits to my doctors at this time helped us to understand that although I hadn't had a period for 10 months, my body was still producing the lining that our body disposes every month, that's why there was just so much blood. 

It was sometime in November I received an appointment for another internal ultrasound to find out whether the cyst had disappeared, shrank or even grew. It had grew. The machine technician told me it had now grown from the size of a golf ball to around the size of a tennis ball. Unfortunately she was just the machine technician and wasn't actually able to tell me anything further about it, I'd honestly rather she hadn't told me anything. The panic then set in, what does this mean? Why isn't it going? Then I received an appointment to meet my Gynecologist on the 7th December and it was then I was told what I already knew about it growing and still being there, but that's not what I wanted to know, I needed to know what happens from here. That's when I was told that they would need to perform a laparoscopy (key hole surgery) to remove the cyst, and terror set in from that moment. I was again sent for more blood tests and then sent on my way to await my surgery date.

It wasn't until April 2017 that I finally received a date for my preop which would be on the 8th May, and then my operation would take place on the 16th May. From then until my operation I spent many the occasion in the doctors because of various side effects including borderline acne, back pain, stomach pain, pain everywhere really, and the constant need to be sick. 

Monday the 8th May finally rolled around and it was time for my preop, something I was quite nervous about because it was the final step before my operation date. I spent around 2 - 3 hours in St Helens Hospital for my preop which involved quite a few tests, but mainly just waiting around. That's when it happened, I was told they could no longer perform the operation at St Helens Hospital because of my weight and because they are preparing to have to remove more than just the cyst. FLOOD GATES OPEN. I had waited SO long to get to this point, knowing it wasn't going to be happening the following week was just awful, then I had to come to terms with the idea of them possibly removing my Fallopian tube and/or ovary.

Another few weeks of waiting and the appointment came through the post, my operation was set for the 3rd July at Whiston hospital. I went to sleep the night beforehand feeling like I was going to wake up with a full blown cold. Waking up on the 3rd July I had a rush of different feelings, I was worried which I think is a feeling most people would have, but I was also scared they wouldn't perform the operation today due to me coming down with a cold. 

We got to the hospital around 9:20, 40 minutes before I was due to be there, but it's better to be earlier rather than late. We spent a good couple of hours just sat in the waiting room anticipating the moment they would finally call my name. I was called around 11:30 to have a couple of tests and speak to the anesthetist about what their job was and any worries I may have. Then I was back in the waiting room, but it wasn't long after that we were called because I finally had a bed, the best thing about my inpatient visit was the fact I had bagged myself my own room rather than being on a ward with 3-5 other ladies. Throughout the couple of hours we were sat in the room, most of the people involved in the surgery did come and introduce themselves to me which I really appreciated. I think meeting everyone involved helped to calm my nerves a little bit, and I was absolutely terrified. 

It was around 2pm one of the nurses came to collect me and we walk down to the theater, and I have to admit that it did cross my mind to just run in the other direction. We entered the room, and although I had met most of the people involved in the operation, I was still surprised by the amount of people waiting for me, the amount gathered around me when I lay on the bed in preparation of what was to come. I was given gas and air and the bit I was dreading was about to happen, the cannula was going in my hand whether I wanted it to or not. I remember them telling me they were pumping some strong pain medication through my system and then in a few moments they will be putting me to sleep. That's it, that's the last thing that I remember before I finally woke up. 

I've never been put to sleep before, and waking up from the anesthetic was one of the weirdest experiences I have lived through, it just made me feel so weird. When I eventually came around properly, the nurse who had been sat by my bedside awaiting me to wake up told me they had managed to get the cyst out through keyhole and luckily didn't need to do a full bikini line cut. Then she told me that as well as that they did unfortunately have to remove my Fallopian tube due to them not being able to repair this after the cyst was removed. 

Cut out all of the tears the pain and worries that have got me to where I am today, 6 weeks post op. Honestly? I don't feel any better about anything, I don't feel like things are going to get better for me. I'm still in a bit of pain, severe pain coming back every now and then, but my wounds are almost healed and most infections that I contracted have almost disappeared. 

I have PCOS and here's what that means for me as an individual...

It means I don't have periods, not since January at least.

It means I may struggle to have children.

It means that I won't be fertile as long as most women.

It means I need to try and have a baby earlier than I may like to before I miss out on my chance.

It means no matter how much I look after my skin, the spots just keep coming back.

It means my ovulation may be irregular or even none existent.

It means I have excess body hair in places I would rather not have it. 

It means gaining weight is too easy.

It means losing weight is hard.

It's resulted in the loss of my left Fallopian tube.

It's resulted in an increase in both my Anxiety and my Depression


  1. Thank you so much for sharing your story, so many women deal with this and not many talk about it so candidly. This sort of representation will go a long way toward showing them they are not alone. I do hope things get better or you, perhaps the right treatment is just a matter of find the right medication or doctor and it's just around the corner. I hope it is, at least.

  2. This post made me cry. I've recently been diagnosed with PCOS after having an incentdal find on an ultrasound but I carried no symptoms because I've been on the pill since I was 16 so everything was normal for me! I'm so sorry you had to have your Fallopian tube removed but I hope this now helps at least some of your pain. Sending lots of love from a fellow suffer 💜
    Liz x

  3. So sorry to hear about everything you've been through! You're such a strong person I admire you. Hopefully it's all good from now on for You!xx

  4. You're such a strong woman, I'm so proud to 'know' you, even if I don't really.

    I think it's awful that they wouldn't give you a smear when you asked? How old were you?

    Well done for posting this, it can't have been easy.

  5. Gosh you've been through such an ordeal and you're so brave for sharing this story! I cannot believe they wouldn't give you a smear test, that is out of order.

    I am so glad, after all that waiting you found out the problem and something was done. But, I am so so sorry for the aftermath of this. You're a very strong person and I truly admire you for writing this post.

    Faye Jessica |

  6. I had no idea PCOS was even a condition and I'm so sorry to hear about your experiences/what you've been through. Thank you for sharing this, and for educating others too.

    Sending love xxxxxx
    Anika xo |

  7. All your beautiful comments warm my heart, you're all amazing and I'll reply individually over the weekend xxxx

  8. Wow that's one heck of a story to have to tell! I have PCOS but not as bad as that. I haven't needed surgery because when I had a cyst that was size of grapefruit it burst before my operation date!!! I get the stupid PCOS side effects though. Spots, facial hair, pains etc. I'm only just over the borderline for PCOS but that's bad enough! Good on you for telling your story. I always think posts like this help others!! X


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