Ahhh hellish hormones – help me!

As you will likely know all too well, PCOS = hormonal imbalances, but how does this affect you in your day to day life?

hormones

Obviously everyone is unique and will subsequently have different symptoms, feelings and experiences when it comes to hormones, so today I’m going to get personal and share my perspective – maybe you can relate, maybe not but then it’s an insight into a different perspective which can be useful too!

The primary issue with the PCOS hormone imbalance is the increase in testosterone which is often the culprit for some of the less desirable symptoms too (such as hirsutism, acne, mood swings)…

Throughout my experience with PCOS since being diagnosed at the age of 16 I’ve struggled with 3 core symptoms (in addition to the mystery of the missing menstrual cycle) those are weight gain, acne and insane mood swings – I’m well aware that I’m very lucky with my PCOS, it’s not as severe as some ladies and I don’t have to battle with some of the symptoms such as hirsutism (I just have much thicker/darker hair on my legs/arms etc.) hair loss or female pattern baldness… but without diminishing my experience it has been tough nonetheless.

Over the past year I have been struggling particularly with enhanced swings in mood – so much so it began to scare me as the feeling of not being in control or having a hold on my thoughts or emotions was becoming far too commonplace. At several points throughout the past year I thought I may have to go back to the doctor for antidepressants*.

*Disclaimer: I was diagnosed with PTSD and depression at 24 at university following neurosurgery and recovery following a brain tumour – it was a lot to take in.

So I powered on through but was barely keeping my head above the water, I felt like a walking time-bomb ready to snap, break or flip at any moment – not a recipe for an enjoyable time.

I did what I could to try and combat these feelings – I got back into meditation, crystal therapy, aromatherapy, I left a job with nothing lined up to leave a toxic work environment where I was being treated poorly, read or listened to the audiobooks (what feels like the whole self-discovery/personal development department of amazon) and tried to do more exercise to boost my mood. Unfortunately these had a limited effect and the effects were short-lived. I knew I needed to do something more…

So 7 months later I finally gave up and went to the doctor (having moved I have a new GP so who knows how this was going to go…) I was so relieved as she actually knew what I was talking about when I said about PCOS and my moods asking her for help. This is the first time a doctor has listened and taken my thoughts seriously rather than palming me off and telling me to “loose weight it will help”. She scheduled an ultrasound and blood tests to see what the status was since it’s been over 10 years since I was diagnosed… great – progress!

At the ultrasound it started to go downhill – the ultrasound technician was very dismissive of my PCOS as according to her I was on the borderline with just enough cysts to qualify (following changes to the definition and symptoms over the past few years)… I went and had my blood tests and waited a little while before booking my next appointment with the GP to discuss it all.

I saw her again and she explained that I was “an odd case” – well that’s always lovely to hear isn’t it? She went on to explain that my tests overall were inconclusive?!?! Although she agreed that I am at the lower end of PCOS so she’s not concerned so can’t/won’t do anything further. However if I want to get pregnant in the next year she’ll happily help me and refer me to the local PCOS specialist – but not otherwise… so I’m single and am not looking to have children just yet, I’m aware of the problems I may face but will go to the doctor as soon as I’m looking to conceive. It just drives me absolutely nuts that they refuse to do anything for people that do not want to get pregnant yet have the same disorder and symptoms – infuriating!

Instead she went on to give me an extended lecture about losing weight and diets to “help myself” – again like it was new information to me. It’s not as if I haven’t been trying to this for years – even though I’ve lost weight (not loads but enough to make my periods appear more than once a year) I’m still struggling with my mood swings which I know is related to the hormone imbalance.

Yet they won’t do anything to help me. If I were to go back to the doctors with low mood following my previous depression diagnosis I can guarantee that they would “help me” and happily prescribe me with more anti-depressants or something… but that’s hardly going to help me as a long term solution here…

I was so pleased to find out that my new doctor was fairly well versed with PCOS and had referred people to a local specialist before and thought I may finally get some help, especially when she arranged for multiple tests to get the latest information. But it was so disheartening to be effectively told that my PCOS wasn’t good enough to warrant help and because I wasn’t trying to have a baby I didn’t deserve assistance, but if I want to get pregnant there is plenty they can and will do to help me conceive…

So I’m back to square one and this just reiterates my issue with the perception of PCOS within the UK medical community and why I started this site – yes fertility is a big thing for ladies with PCOS (it’s a harsh aspect of the disorder that puts some people through hell as they try to create a greatly desired family of their own) but people need to understand that not all ladies with PCOS are trying to get pregnant (maybe they aren’t at that place in their lives or maybe they don’t want children of their own – whatever the reasons) so there needs to be support and understanding for these ladies who will still spend much of their life struggling with weight, excess hair, abundant acne and the myriad of other symptoms… we also deserve a voice.

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