This is going to be a very personal post compared to what is normally on my blog but as September is the month to raise awareness, I thought I would write about it. It is an incurable, lifelong condition that I got diagnosed with in July after I was really ill for a few weeks. The condition I’m talking about is Polycystic Ovarian Syndrome or PCOS for short. I don’t really know how this post is going to go but here goes..
My story starts when I was experiencing stomach cramps, like the ones you get when you have trapped wind or eaten too much. Because of this, I ignored the cramps for about 5 days and just carried on with my day-to-day life but then I thought, something’s not right as everything else is the same – I was eating, drinking, going to the toilet as normal, wasn’t due on my period so there was nothing to indicate why I should be cramping and after the dreaded google of symptoms, I decided to book a doctor’s appointment. After questions and tests, the doctor said she didn’t know what was wrong with me and asked me to take an immediate pregnancy test, urine test and head to the hospital for blood tests. Thankfully the pregnancy test was negative, and my urine and bloods came back clear so there was no explanation. I deteriorated in the days after having my blood test to the point where I called 111 at work as I could barely move. The cramps were agony and felt like my insides were being ripped out, and after an emergency doctors appointment, he diagnosed a form of constipation but asked me to see a female doctor for a vaginal examination. The next day, I had these tests which included a smear test (not as bad as everyone thinks!) and was then asked to book an ultrasound.
A week passed between my appointments and on the day of the ultrasound I was a nervous wreck. As much as I had been ‘diagnosed’, I just knew that it wasn’t constipation. I went into the ultrasound room, had the cold jelly put on and waited while the sonographer did the scan. A few minutes later she said that my uterus and womb looked healthy and normal and that she was now going to scan my ovaries. This seemed to last 10 times longer and she was pressing so many buttons I started to get anxious, wondering what was wrong? She finished the scan and said that they looked ok, however I was showing signs of polycystic ovaries and she started to explain what that was and I was like ok, whats next? She said that this probably wasn’t the cause of my pain and that it was an incidental find so I had to ring the doctors and book an appointment with them to get more blood tests to fully diagnose this. I walked out of the scan and didn’t really think too much into it until I got home and googled what polycystic ovaries is and that’s when it dropped and dawned on that I could have something seriously wrong with me.
After putting off calling the doctors as I refused to accept that I had something wrong with me, they called me. I thought it would just be to book in for some more blood tests as I knew you had to have bloods and the scan to diagnose but boy was I wrong. I did not expect to be told that just from the scan – which they rarely do – that I had PCOS and this was more than likely the cause of my pain. Its cliche but the next 10 mins of the phone call was a blur. I remember him saying that it is incurable and you just have to control the symptoms to help improve your life. He said for me to continue on the pill as that would regulate my periods and stop them being heavy as well as controlling acne. All of these are symptoms of PCOS which I don’t experience because I am already on the pill. I was told I had to watch my weight and lose some weight as obesity can flare up the symptoms as well as watching out for depression and anxiety symptoms as they occur after a diagnosis. The phone call ended and the only question I remember asking is will I be in pain forever? And he said, possibly. At this point I rang my boyfriend and just cried, how was I going to be in so much pain forever and why is it incurable?
That day and night I hardly said 2 words to anyone, I was completely zoned out and had no idea how to feel, what to think or what to say. The thing that was getting me was a side effect of PCOS that the doctor didn’t say to me but I had read about – infertility. Whilst this isn’t 100% there’s a high chance people with PCOS will struggle getting pregnant and this just broke my heart. All my boyfriend and I want to do is have kids when we are older and the thought that this might not happen or might be a struggle broke both of our hearts and I felt like I’d failed him, failed my family and failed his.
Fast forward 2 months and I’m getting there. I’m still struggling with cramps all the time, they’re not as frequent but are still as painful. I’ve changed my diet and I’m trying my best to lose weight which is harder than I thought as too much exercise causes pain. In all honesty, I’ve put on about a stone since I started the pill when I was 16 and have never struggled with losing weight so not being able to lose the few pounds is hard on me mentally. I sometimes struggle with the thought of the future although I know, I’ve got to stay positive and cross that bridge when I come to it. I’m monitoring my moods, altering what I eat and trying to stay on top of my pain but I unfortunately will be in pain for the rest of my life.
What is PCOS?
Polycystic Ovary Syndrome is a condition where the follicles on the ovaries aren’t mature so an egg doesn’t release fully and the follicles are filled with fluid. There is no cure or no real cause but they believe it’s due to a hormone imbalance – an increase in testosterone is common in people suffering with PCOS. Symptoms include:
· Heavy, painful and irregular periods
· Excess hair growth
· Excess androgen
· Weight gain
There are of course, many other symptoms but these are the most common.
So that’s my story. I haven’t posted this for attention or for sympathy but to raise awareness of a common condition – 1 in 10 women have this and many of them don’t know about it. Some people find out like I did, others find out when they are trying for children but if you are experiencing any of the symptoms please, please, please go to the doctors as they can help you. I’ll leave the link to the NHS page and PCOS awareness pages below and if you have any questions or are suffering like me, I’m here to talk too.
PCOS website – http://www.pcosaa.org/
Thank you for reading.