From Darkness Comes Light: Diagnosis Dilemma Part I

Before I get into the fourth and final topic of this little blog spasm, I want to start by saying a humongous thank you from the bottom of my heart for everyone who has pledged towards my Kickstarter campaign. I’m raising money to make my debut album, and we’re on the home stretch now towards reaching my goal. 

There’s less than a week to go and we’ve got less than £1K till we make it. There are rewards to suit every pocket, so if you feel you can throw a few quid my way, please do. If finances are a bit tight right now – don’t worry, I understand!

If you could give the campaign a share to your friends with a little note to say why it’s important to you that this project gets funded, I’d be ever so grateful and it helps a great deal.

Click here to visit my album Kickstarter campaign page

Always questioning, never satisfied

This is the post I feel most anxious to write and share with you all. I’m about to tell you about some of the newest discoveries and I don’t as yet have all the answers to make sense of it. (As someone who likes to have all the answers, I always feel hesitant to talk about things I don’t fully understand!). I’ve decided to split the post into two parts, as it was becoming a ridiculously long blog! So look out for part II tomorrow.

I’m talking about the dilemma of seeking a diagnosis – the ones I’ve had and the ones I’m investigating. 

Why do I always feel there’s something wrong with me?

Why does it feel I still have so many unanswered questions?

Why do I spend so much of my time seeking out the truths and facts of my conditions? 

Why is life STILL so hard sometimes?

I’ll be honest, past-Mel can’t believe this post is about to happen, but present Mel knows it’s a huge part of the mental health jigsaw puzzle. For me it all falls under the #KeepTheConversationGoing umbrella; ripping open subjects heavily shrouded in mystery and stigma. 

So, in the spirit of being open and honest with each other… allow me to talk about my menstrual health…

Content warning: description of suicidal ideation

Poly Cystic Ovary Syndrome

(Or PCOS for short).

Now, I know that there’s a large proportion of my readership who have never suffered with menstrual health problems (*nods to the gents*) – but I guarantee you’ll know people who do, they might just have never talked about it with you. 

I had always had ‘normal’ periods. Regular bleeding, predictable timing, manageable pain, no mental fall out. This ‘being a woman thing’ was easy. But somewhere in my mid-twenties that started to change.

Two weeks out of every month I’d be fine – functioning sanely, able to carry out daily tasks, look after myself well and work efficiently. The other two weeks would be spent with crippling anxiety, unbreakable negative thought cycles, and an inability to communicate effectively – a complete functional shutdown and feeling of insanity. 

I started to experience extreme changes in mood around the time of ovulation. It was like a switch had been flipped in my brain. One day I’d be fine, the next I’d become obsessed with thoughts like friends no longer liking me, and the need to cut important people out of my life. I’d get overwhelmed by feelings of fraud and a failure – I’m not good enough at what I do. I should quit and get a proper job. I didn’t want to be seen by anyone – I’d cancel lessons at short notice, preferring to hide from the world. If I did have to see people, I could act out of character or just be very quiet.

I experienced suicidal ideation where for hours at a time my thoughts centred around the feeling of stabbing myself in the heart, the process I would take to do it, the noise I would make, the pain I would feel. The release I would gain. I’d tell close family that it would all be better if I wasn’t here. I couldn’t go on. 

This experience would continue for days on end for up to two weeks at a time.

When I finally started my period, the mental anguish would lift in time for the excruciating pain to begin. Joy of joys. The white hot pain would spread throughout my lower abdomen, pelvic floor, lower back and legs. I was often left feeling nauseous, weak and light-headed. Painkillers wouldn’t touch it. Hot water bottles became my saviour but would scald my belly. 

These symptoms would often consume me for 3-4 days at a time. I was often unable to work, taking refuge in a sofa-based blanket fort, Netflix to hand.

(Note to self: send Netflix a muffin basket or something – they’ve really been there for you over the years!)

It’s the sort of pain that imprisons your body and your mind. It’s inescapable, emanating from your very core and wrapping tighter and tighter around every part of you like a strangle weed. Coupled with the tormenting mental health side effects – my ‘women’s issues’ became a debilitating battle I fought month after month. For years.  

Being a woman isn’t straightforward

I’m going to take a moment to just pat myself on the back, because despite everything I somehow managed to build a successful brand and reputation and supported myself through this income.

However, I worry that I lost students during these years through not being able to verbalise the struggles I faced. I wasn’t able to talk about the reasons for my regular hibernations because I didn’t fully understand why they happened or feel able to talk about it. 

If any of you happen to be reading this, I hope it explains why you went weeks at a time without hearing from me. I hope you know how sorry I am for the way things went, and that there was nothing meant by the radio silence. I was ill and unable to tell you that.

And an extra special thank you to all those who stood by me, despite the shoddy customer service! 

Enough is enough

In 2018, after having quite enough of living a half life, I made the decision to see my GP about my situation. I was diagnosed there and then with PMS (which is apparently a real medical condition and not just a satirical, misogynistic joke) and sent for tests. Let me tell you, getting an internal ultrasound is quite the experience! 

I was diagnosed with PCOS – which seems to mean my ovaries don’t function normally *holds up hands, shrugs shoulders*. 

It seems not much is really known about why it happens or how to treat it. I was handed an NHS print out which basically told me to ‘lose weight, eat better and exercise’ (slow clap for that classic piece of NHS advice…) and was offered some anti-depressants, which I accepted but stopped taking. I didn’t feel that was the right course of action for me, despite having previously taken NSAIDs for anxiety and depression. 

This was different – why wasn’t I offered any other sort of help? Pills are easy, I suppose…

One thing you’ll find, if you ever get a diagnosis for a menstrual health disorder, is that there’s not much solid evidence or advice out there. If my experience is anything to go by: it’s a blanket coverage, shoulder shrugging ball pit of nothingness. 

The best help and advice I’ve gotten is from talking to other women. It’s amazing when you start talking just how much of a struggle others go through – and you’d never know!

Now one thing I do know about PCOS is that it affects your ability to maintain a healthy bodyweight. Something I’ve struggled with for years. You’d think advising someone with a binge eating disorder to lose weight would be futile.

It was. I found it rather dismissive advice, even though of course I knew dropping some pounds would help. 

I began to see that my path to wellness had to be driven by myself. 

I read up about the Mirena coil and spoke to many women about its effectiveness in reducing pain and PMS symptoms. I had always been wary about using hormonal contraceptives – favouring a more natural approach – but I wanted to get on and live my life and felt I wasn’t able to do that without hormonal intervention. 

Armed with knowledge, last winter I booked to see my doctor and was taken aback to be asked “what do you expect to get out of this appointment?” I guess with only 10 minute appointments, and in the modern age of self diagnosis, it is often quicker to cut straight to the chase. 

I had the coil fitted in February this year. Whilst it is still settling down, I have noticed the monthly pain almost completely disappear or in the rare months I get any, it can be sorted with plain old paracetamol. My hot water bottle has been retired. I no longer experience the mood swing switch at ovulation and my mind is on a much more even keel. 

My period no longer rules my life and that is incredibly freeing.  

Whilst I am grateful for the help and advice I have received from my friends and confidants, I question why it was so difficult to get a medical explanation in the first place.

Why wasn’t I offered a coil when I was first diagnosed with PMS and PCOS?

Why are women just expected to struggle and suffer?

You shouldn’t struggle and you don’t have to suffer. Help is out there.

Don’t give up. It can be better.

Diagnosis Dilemma continues in Part II coming tomorrow…