OPINION
Content warning: contains mentions of suicide ideation
I’m just waking up. I roll over to reach for my phone, but before even having a chance to open my eyes and check the time, I’m hit with an intrusive thought.
I’ve had PMDD, or , for about five years now. From the day I ovulate until a few days into my period - roughly a fortnight - I am completely overwhelmed with the desire to simply not exist anymore. All day long, intrusive thoughts chase me around. Making coffee? I want to die. Watching TV? Kill me. Trying to work, taking a shower, catching a bus? I’m exhausted with being alive and I just want it to stop.
PMDD isn’t just intrusive thoughts and suicidal ideation, though. It’s an intense overwhelm from everyday stimuli. Hearing a lawnmower across the street will build so much tension in my body that it feels like it’s attacking me physically. Any small irritant is so heightened that I have to dig my nails into my hand to stop from screaming at a stranger in public for standing next to me, or hitting the crosswalk button after seeing me do it already. Someone brushed against me accidentally? That’s enough for a murderous rage. And then there’s the crying over absolutely nothing, the physical pain, the full-body fatigue, the complete lack of motivation to even climb out of bed to do basic daily tasks like showering.
PMDD isn’t just intrusive thoughts and suicidal ideation, though. It’s an intense overwhelm from everyday stimuli.
Then, my period comes, and all of a sudden, I’m fine. Or, as fine as a person with severe chronic pain, endometriosis, anxiety and depression can be. Suddenly I’m able to function, and I’m tasked with the monumental task of putting my life back together after having it all fall apart for two weeks, with the full knowledge that I’m in a race against time before everything falls apart all over again.
I have tried everything gynos have thrown at me to manage my PMDD. I’ve taken a gazillion different contraceptive pills and antidepressants, I’ve tried the mirena and the Kyleena, the nuva ring, acupuncture, chiro, diet changes, essential oils. Currently, I’m on my last ditch attempt to stop my periods with a hormonal nasal spray called Synarel. If this doesn’t work - and it’s been 16 weeks so I can’t say I’m feeling too hopeful at this point — I’ll be left with one option: to have my ovaries removed and to put myself into early menopause, and then to try to minimise the physical side effects of that with synthetic hormones.
The last time I saw my gynaecologist, she said that it’s very rare that she’d agree to perform an oophorectomy on someone my age if they didn’t have ovarian cancer, but that she’d make an exception for me.
But here’s the thing: we’re not actually out of options.
Last year, after being diagnosed with endometriosis after a laporoscopy, I was able to do a six month course of Zoladex, which is a pellet they inject into your stomach to induce chemical menopause. On the PBS, it was around $40 a month, with an additional $40 to pay for oestrogen pills to minimise side effects such as hot flushes. Once I’d adjusted onto it, it worked like a dream. For the first time in years, I had months free from the intense desire to jump in front of a bus, what a treat!
So why am I not on Zoladex anymore? The PBS only covers it for a six month period. After that, it costs $275 a month, and as someone on a low income due to my many chronic health conditions, I simply cannot afford it. I can’t afford to keep my organs inside my body.
You may be thinking, well, that’s awful but if there’s a cure it’s worth doing the surgery, right? Well, it’s not guaranteed to work. Aside from the whole, “So you want to store your eggs in case you want to have kids in the future?” question, there are a whole bunch of other things to weigh up.
Having fibromyalgia, there’s always a risk of my chronic pain worsening with surgery, so a major surgery like this is certainly not without risk. Then, there are all the symptoms of menopause; the heightened risk of osteoporosis, the hot flushes, the hair loss, fatigue, insomnia, loss of sex drive, anxiety, irritability, moodiness, and insomnia. These symptoms would be the ones I’d be trying to manage with synthetic hormones, but there’s also the possibility that I wouldn’t be able to get the balance right, and there’s no “Oh well guess that didn’t work!” takesies-backsies if things were to get worse rather than better.
Having fibromyalgia, there’s always a risk of my chronic pain worsening with surgery, so a major surgery like this is certainly not without risk.
The combined result of all of these possibilities makes it a very difficult decision to make. Do I want to roll the dice on such a high stakes gamble, knowing that I might be making my situation permanently worse? Is the chance of a brighter future worth risking the few good days I have each month? Am I absolutely, 100 per cent sure that I have tried everything else?
More than anything, I feel intensely frustrated and resentful knowing that there is an option that works for me, but it’s completely cost prohibitive and out of reach. I can’t comprehend the idea that I can’t afford the medication that allows me to live without suicidal ideation. Having the surgery is not a decision I feel especially confident in, but I think I owe myself a chance at a brighter future by doing it. I can only hope that by sharing my story, perhaps the restrictions around Zoladex would change in the future, so that other people dealing with severe PMDD don’t have this option taken away from them after six months.
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Stephanie Anderson is a freelance writer.
