Sunday, 29 May 2016

PCOS: My story

This is a blog post I have wanted to write for a while, yet it is very daunting to me. It is part of my life that has completely changed me, who I am, what I look like and sometimes I still haven't come to terms with it completely.

Today, I am going to write about my PCOS story.
*disclaimer* (I am not a doctor or medical professional of any kind, I am writing about my own experiences and advice. Medication and health should always be talked through with a professional. Like I said, I am writing my own experience.)

Firstly, what is PCOS?

Taken from an NHS website, this is how they define PCOS:

"What is polycystic ovary syndrome? (PCOS)
Polycystic ovary syndrome (PCOS) is the most common hormonal disorder in women of reproductive age. In women with PCOS, the ovaries contain more developing follicles (small fluid filled sacs) than normal. The eggs in these follicles do not mature and cannot therefore be released from the ovaries leading to the formation of cysts.'

My story:

When I was 16 years old (2009), I made the decision to go on the contraceptive pill. I spoke to my doctor and he agreed. This is where for me, everything started coming to light. I started changing, but I wasn't the one to notice. I started becoming very irrational, my weight was fluctuating, I felt a bit robotic. My Mum was the one to firstly notice and after 4/6 months we went to the doctors again. I asked to be put on a different contraceptive pill hoping it would help. My Mum tried to suggest to the doctor to let me have a blood test to examine my hormone levels. We were hoping this would enable him to prescribe me a contraceptive pill which would be best suited to my hormone levels rather than trying out multiple pills. We were basically laughed out the door by the doctor who actually said a blood test will not prove anything. After trying 4 different pills within 2/3 years, I decided not to take it anymore as it was just damaging my health. 

Around this time, I was put on antibiotics and lost nearly 2 stone very, very quickly. I also started seeing the symptoms getting worse. I had no periods at all, my weight was fluctuating all the time, my anxiety was sky high and I just felt exhausted. I kept visiting different doctors surgeries who were testing for PCOS and every time I had a scan on my ovaries to look for cysts and blood tests, I was told 'you're completely normal'. 

I felt so upset and defeated after talking to different doctors. How could all my results come back normal and I feel anything but normal? My Dad noticed when cutting my hair that I had alopecia. This is another symptom of PCOS. I just felt very alone and unable to change parts about me which I despised and lost my confidence with that too. The weight gain was destroying me; it just wouldn't shift. I also find it very hard to eat certain things due to being a highly selective eater. I have a phobia of trying new foods so it's incredibly difficult.

I decided to see one more doctor who my family advised me to see as she was very caring and wanted to actually help you. In the appointment, she looked through my medical history and discovered that actually, my scans weren't normal at all and my hormones were imbalanced. From this, I was diagnosed with PCOS and prescribed Metformin to help my insulin levels as it can help balance your hormones. I was told it came with symptoms like feeling bloating, running to the bathroom, and dizziness. I was also told it would be near impossible to be able to have children and when that time comes you will need to speak to a professional.

There was such a relief after being diagnosed, it felt like I could finally get on with my life rather than just wondering what is wrong with me. This was in August 2013.

In October 2013( I was just 20), I went to the doctors to talk about Metformin as I didn't believe it was having much difference on my life and whether I should still be taking it. The doctor decided to send me for a blood test to check my hormone reading. A few days later, I received a phone call telling me the doctor wanted to speak to me. Alarms went off in my brain - something isn't right.

I can safely say, I didn't sleep well that night. Ben came to the doctors with me too. I was told that my blood tests results came back and they showed a high pregnancy hormone and that I was pregnant. I was blown away. I had been told for years that if I had PCOS, having a baby wouldn't be possible, that bloating was normal, heck I'd even had blood tests through the entire year that hadn't picked up that I was pregnant. I was rushed for an emergency scan and was told I was 37 weeks pregnant.

I was so shocked. At this point, I was half way through university and told you could go in to labour at any point. I hadn't ever even held a baby before and now I am going to have one?!

My first reaction to all this was I was so angry at the doctors telling me the wrong things, not giving me proper information and support. That no one asked me to do simple tests. Most of my symptoms were showing signs of pregnancy and PCOS, but it was never asked of me once.

Of course, I was so happy to have a healthy little boy, but I felt robbed of a lot of things because Ben and I were not able to prepare ourselves and a home for our family. It was a shock and an experience I cannot really describe to any one but Ben because he was the only other one going through it.

Anyhow, since having Nathaniel, I have had my ovaries scanned and as I have grown older I seem to have more cysts on my ovaries and my symptoms have got slightly milder but not completely. However, I have come to not let all the symptoms consume me and fight it. 

They will tell you it will be difficult to have children, but I have two wonderful children.
They tell you it will be near impossible to lose weight, but I have lost 2 stone.
They will tell you so many things and you just have to be ready to fight.

I find the hardest part of PCOS is that a lot of people still have never heard of the syndrome, many girls are not diagnosed and many people judge others which is never right.

I feel it should be talked about more as going undiagnosed can lead you to being very unhappy and I know exactly how that feels. I know not every one will have the same symptoms as me and that's what makes PCOS a syndrome. I feel blessed every day that I am lucky enough to have two children and I do not take advantage of that at all. 

All I want to do is spread awareness and share my story.

Have you ever heard of PCOS before?
Are you experiencing any of the symptoms?
Leave comments below.

Love S x


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