Thank goodness! And by thank goodness, I mean thank goodness for finally getting a diagnosis; I’ve been suffering for over nine months with severe symptoms that no-one could pinpoint the cause of. It only took six blood tests, four flare ups, three trips to A&E, two invasive cameras, and one month off work to end up here. But still, this is where we are; I have Polycystic Ovary Syndrome .
Just a trigger warning; there will be talk of blood, invasive procedures, and hospitalisation.
So, what is PCOS?
To put it simply, it’s a condition that affects how your ovaries work. It’s main characteristics are irregular periods, excess hormones, and polycystic ovaries (where your ovaries become enlarged and have excess follicles). All of this can cause a multitude of issues, from weight gain to excess hair growth, fertility issues to increased chance of other illnesses and diseases. Thanks to the fact it’s mainly hormone based, and your body runs off hormones, there’s no short list of issues that PCOS might cause.
Despite around 1 in 10 people with ovaries having PCOS, making it a relatively common condition, everyone’s PCOS is different! Some people go through life not knowing they have it, whereas it can completely dictate other people’s lives. To be diagnosed with PCOS, you need to have at least two of the three main characteristics; I’ve been diagnosed with irregular periods and excess hormones.
So, how was I diagnosed?
Well, for about four years, I’ve had irregular periods. Thanks to being on birth control, I didn’t really notice how irregular they were. I just thought the random spotting, long periods of nothing, sudden bleeding, and then months of bleeding were just all a part of being on birth control! (I still laugh when I think of all the things people with ovaries go through when they are given birth control, and yet they had to stop the men’s birth control trial because it messed with their moods. And by ‘laugh’, I mean ‘scream into the void. Anyway, that’s a different blog post for a different time…)
I really started to take notice when my cramps and stomach swelling got really out of hand. Coupled with the fact that around the time I had my period, there was also blood coming out from where there wasn’t supposed to be blood, I went to the doctors. Unfortunately, like so many people who go to get checked out about periods, I was completely dismissed – I received the response ’just deal with it’ no less than three times.
Then, came December of last year. After a week of a swelling stomach and losing an abnormal amount of blood, and not from the usual period place I may add, I was sent to A&E. Finally, I was starting to get taken seriously. There were numerous blood tests, tears on the phone to my mum, and an awful lot of poking around. But, they couldn’t find anything wrong; no cuts, no hemorrhaging, nothing out of the ordinary apart from the swelling. They deduced it was something to do with my intestines. The doctors chucked conditions like Crohn’s Disease, Colitis, Diverticulitis, and even the Big C. So, they booked me in for a sigmoidoscopy (aka a camera up me bum!)
Christmas came and went, and everything seemed normal. Then, the day before New Year’s Eve, I woke up in immense pain. I couldn’t eat, I could barely stand, my brain and limbs felt like they were wading through a swamp. Eight hours of sitting at A&E later, I was sent home with nothing but ‘wait for the sigmoidoscopy’. I should have spent my opening to 2020 away with my friends, but instead spent it wrapped up in a blanket, hot water bottle in tow, and an awful lot of bread. A week or two later, I was back to work, feeling as right as rain.
Then came, what my fiancee and I call, ‘The Big Boy’. One morning at the end of January, I woke up in agony. For a whole month, I was housebound. I could barely eat, struggled to sleep, normal bodily functions were all but forgotten. The left side of my stomach would sometimes double in size within an hour. One evening, I got up slowly from the sofa, only to find myself lying on the floor of the next room, looking into my fiancee’s face. I’d fainted. I was popped in an ambulance and on to my third A&E trip, only to be was sent back home twelve hours later with Buscopan and Codeine to keep me going and told, yet again, to wait for the sigmoidoscopy.
Three months after my first trip to A&E, I finally had my sigmoidoscopy. It was meant to be three weeks after my trip to A&E. What happened? My paperwork got lost. It took me hours of calling and battling people on the phone, telling them to look at my record, to prove I needed one. So, at the beginning of March, I walked into the hospital hoping for some clue as to what was wrong with me, only to walk out dejected and sobbing. It was a horrible experience. I was set up for sedation, a cannula was even put in my hand, only to have my doctor tell me they will not be sedating me. I’ll spare you the details and the medical jargon; I was essentially told that I was overreacting, there was nothing wrong with my body. I had no follow up information, nothing from the hospital or the doctors. I felt let down, hopeless, and even ashamed of myself.
The next few months went by in a blur. COVID hit and locked down the whole of the world. But my condition didn’t stop. There were days where I was swollen, brain fogged, and in severe pain. I just lived with it, using up my painkillers from the hospital. But I noticed a pattern. Yes, I knew my periods were irregular. I was used to having spotting, and only really having periods four times a year. But I noticed my pain and swelling was on a cycle. Whenever I did have a period, I would have immense clotting alongside it. So, I trusted my gut and got in contact with my doctor, explaining that I was concerned about my periods and hormone levels. All it took was a trip to the doctors in a mask, a quick blood test, and a phone call a week later to finally give me a diagnosis. Months of pain and tears, and there it was. Poly-cystic ovary syndrome.
In case you couldn’t tell by now, I’m not one to give up on things. So I did my research, learnt about the condition, and how everything worked. Immense pain and swelling? Hormone related. Abnormal bleeding that couldn’t be found through the sigmoidoscopy? It was probably an ovarian cyst that had burst. Brain fog? Insulin resistance. Any issues that had raised its head over the past few years now had an answer.
Come July, I was booked in for an ultrasound to see if I had any follicles on my ovaries. I thought this would be the ‘gel on the belly and swipe’ kind of thing you have if you are pregnant. Nope; it was another camera where a camera shouldn’t normally go, but front-end related! This one was absolutely fine, and I came out of the hospital knowing that I am currently cyst-less; a good sign.
So, what happens now?
I would be lying if I said I was fine after getting the diagnosis. I had to take the afternoon off and I just cried. I called my family and updated them, and then just curled up in my duvet. One of my biggest fears in life has always been not being able to have children. Getting diagnosed with PCOS was a step in favour of that fear. I know now that for most people, PCOS doesn’t stop you having children, it can just sometimes make things a little more difficult (and there’s IVF and adoption, so it’s not the end of the world at all). Still, I am glad I actually let myself be sad. Normally, I push back any setbacks, and go off into the world to try and prove that I can overcome anything. But this time, I let myself feel, and cry, and just be. That’s why I think I am pretty at peace with it now.
After hours of research, I’ve learnt it’s time for a PCOS-friendly lifestyle change. Now, everyone is different, so what I’ve implemented in my life may be completely useless for someone else. The most recommended thing for PCOS is to lose weight (and let’s not get mixed up here – you can have symptoms and PCOS at any weight, it’s not brought on by being overweight). I’ve upped up my exercise routine, and set a deficit of 1500 calories per day, to help lose a bit of weight, in the hope it will calm some symptoms down. It also looks like I may have some insulin resistance thanks to the PCOS, so taking more care of my body will assist here too. I’ve also noticed that certain foods bring on pain and swelling. So, goodbye red meat, processed foods, fake sugars, and coffee.
I’m not anticipating my lifestyle changes will get rid of my PCOS, as that’s just not realistic. However, I’m hoping it will help me manage my condition a bit more. I’ve also come to terms with the fact this may mean a lot more time with doctors and in the hospital, especially if I develop cysts or have trouble conceiving in a few years. I always thought asthma, peanut allergy, and anxiety disorder would be enough for a person, but hey, I’ll take what the universe throws at me!
Why am I talking about this?
Some people would think writing a blog post on this is oversharing in the highest extreme, and I completely disagree. PCOS is commonly ignored and undiagnosed. I want to help raise the profile of this condition and teach people it’s more than just ‘women’s things’. It’s a condition, a common one at that, that needs to be talked about loudly, openly, and honestly. If I can get at least one person learning about it, then I’ve done my part.
Thank you for taking the time to read this, and I hope it’s given you some clarity on what PCOS is, if you’ve never heard about it before. If there’s anyone out there with PCOS, let yourself be known in the comments! I’d love to give you a follow and get to know more about the condition myself.