Book of Eucalypt

The earliest entry I can find here at Book of Eucalypt about my experiences with PMDD (Premenstrual Dysphoric Disorder) is from 2014, however I’m sure there are ones before that untagged.

TRIGGER WARNING – oh my goodness, there’s a lot. Feel free to stop at any point, I don’t hold back or sugar coat anything within this post.

My earliest memory of it being agreed that my mental health concern is related to my hormones is from when I was 19, in 2003. It was made mention from my mother to the psychiatrist I was seeing at the time, and roughly between suicide attempt #2 and #3. My memory of what transpired was the psychiatrist giving my mother a business card for the town’s Mental Health Unit, saying, “I think Rowan may need some time here.” As a family, we declined the suggestion and I found a different psychiatrist.

What is PMDD?

PMDD is a curse placed on those of us who own ovaries. It is our body reacting in a negative way to the change in hormonal release and/or levels. I used to say it was like “an allergic reaction to the release of progesterone in my body” and my body compensated by making me suicidal for two weeks each month. It can be better likened to us being Dr Jekyll and becoming Mr Hyde.

Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder with symptoms arising during the premenstrual, or luteal phase of the menstrual cycle and subsiding within a few days of menstruation. It affects an estimated 5.5% of women and AFAB individuals of reproductive age. While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance. PMDD is a severe negative reaction in the brain to the natural rise and fall of estrogen and progesterone. – IAMPMD.ORG

I need to reinforce that it is not just PMS. It is not us feeling more than a bit sad in the lead up to menstruating. The effect is has on the brain then entwines around our personality, around our behaviour both in the luteal phase and without. It’s not something I realised until now where I can confidentaly say I no longer have PMDD. Why? I’m getting to that.

My PMDD – Early Years

I believe my PMDD began with puberty. I had my first period when I was 11, on 17 March 1996 (easy day to remember) and I know within self that that is when changes began for me. That is when my thoughts began to grow darker. My exploits with various forms of self injury, a few suicide attempts, major decline in confidence all followed as I traversed through my teens in ways I didn’t see it effecting my friends. There wasn’t any other outside influence or environmental reasoning behind why my head became dark – sure, I was undiagnosed AuDHD but I had a supportive home environment, I didn’t experience any form of abuse other than self-abuse (mentally, physically, emotionally, only ever from my self TO myself). Everyone has a bully in their school years, so that was normal. Any segregation I felt was, in retrospect, self imposed. So I knew early on that my mental health issues were not from an environmental impact – it had to be the chemical wiring in my brain.

Thoughts of suicide became daily. I have one memory of writing practice notes within R.E. class (Religious Education). One year my friends cheered when I finally painted something happy and upbeat because a lot of my work was so depressing. One year my “self portrait” was a charcoal drawing of my cletched fist and wrist. Exaggerated blood flowed down from an attempted wound, and dark poetry was written as the background. From memory, I was 15 or 16. I would keep a tally of my self inflicted wounds on my arms and legs, justifying it because it helped “flick the switch” in my brain as tending to them gave me something else to focus on. They were never deep enough for advanced medical attention – that was never the point for me. Retrospectively, the act was a dopamine chase. It was an obsession, and while I felt like I was screaming out for help and having it fall on deaf ears, it was all I had.

I made a promise in those days that, “I will never attempt suicide from the blade because I respected the blade too much.”

I continued to self injure well into my mid-late 20s to various degrees. When life got too overwhelming and I needed a release, there it was. Why? Because I couldn’t drink while I work. I couldn’t get myself drunk (as I began to a little too regularly as a way of mental control once I became of age) when I needed to be alert at work, or behind the wheel of the car.

My moods got worse when I was 21-22 attempting a Psychology degree. I was dating a boy from Melbourne, and for the first time ever I missed my period. I fell pregnant. It wasn’t a viable pregancy and I lost it shortly after I fell. It was like I blinked – and life got dramatically darker.

Evidence on this so far is anecdotal, only because it would be very hard to study this scientifically in a reliable way. At IAPMD we hear from many people whose symptoms started or worsened after pregnancy/having a child/children, however it is also known that PMDD tends to worsen with age and stress, which are both associated with having children. – IAPMD

My PMDD – Before knowing PMDD

I saw the therapists, the psychologists, the psychiatrists. I tried various medications after being diagnosed with depression, treated for possible Type II Bipolar, meds for the voices in my head.

I found a Reiki Master who helped me treat my ails through “meditation, not medication”. I became a Reiki II channel, I embarked on holistic methods of care – and please understand this was quite a thing back in the early naughties. I found Paganism – I went to Witchcraft Intensive weekends, and self initiated myself to Witchcraft, later Druidry, later again Dedications to Herne the Hunter.

I knew each month that I would want to attempt suicide, and each month I would talk myself out of it. One month it was so bad that my mother flew back into the country (she was living overseas at this stage) to help me move back home and seek help. An intervention was organised, for lack of better words. I moved back to the family home with my brother and his now wife. My father and I would go out on his days off exploring and taking photos of nature, eating lunch at our favourite food courts.

Oh… that coincided with the pregnancy blink. That makes sense now.

Once I stayed at my grandparents house because I knew if I went home to where I was living at the time, I would’ve attempted.

For a while in my late 20s I was adamant that I was experiencing cyclical Dark Night of the Soul journeys, forgetting each month that that was my train of thought. I was so excited because, for a time, I honestly thought that was what was going on. It was a crisis of self, and each cycle I had to go through the Darkness to be reborn.

I was later diagnosed with PMDD (premenstrual dysphoric disorder) which I am telling the world about because it only occurs in 3-8% of women world wide. This explains why I can go so well at something for a few weeks before giving up – once my hormones change to PMDD mode, it’s a nightmare trying to stick to anything, and I want to revert back to the comfort of my old normal. It takes all my energy not to fight with my husband, not to want to kill myself, and to tell the inner-self that my brain is lying. Depending on the ovary it’s 5-14 days of my mind telling me “you’re worthless, you’re pathetic, you’re fat, you’ll never achieve your goals, why don’t you just die already.” Sometimes my mind is incredibly visual, and it’s like youtube in your mind showing myself ways of killing myself. Every month. I liken PMDD to hormonal bipolar, only more controllable (for me, I don’t have it nearly as bad as some women in my support groups). I’m back to normal within a few days of bleeding. – Blog Post, 21 January 2015

I saw the GPs asking for help – often being told that it was in my head, why hasn’t a psychiatrist given you more of a diagnosis, we can’t measure hormone fluctutions. I had one FEMALE GP in Sydney tell me that PMS doesn’t exist, because she has never experienced it herself, therefor it doesn’t exist. (I’m pretty sure I’ve never experienced an erection because I don’t own a penis, but I know they exist.)

And the burning questions kept piling up and no one, not the countless mental health professionals I had seen over the years could answer.

Why am I suicidal daily? Why is the idea of suicide constantly there?
Why do I want to leave my partner each and every month?
Why do I feel the need to self injure, self destroy?
Why am I losing my temper at the most inane things?
Why does it feel as though my mind is constantly screaming at me?
Why does all of this go away once I menstruate?

My PMDD – Discovering the Term

At 28 I discovered Premenstural Dysphoric Disorder. I went on a rabbit warren Google journey of Type II Bipolar, returning to that possible diagnosis because it was cyclical and it matched to a degree. But PMDD… it matched to the core of my being. PMDD was accepted into the DSM-5 in 2013, so naturally I couldn’t find a diagnosis prior. I found a list of 11 symptoms that were key, and I might have cried with both happiness and frustration.

• Anger or irritability? TICK. TICK. TICK.
• Feeling on edge, overwhelmed or tense. TICK. TICK. TICK.
• Anxiety and panic attacks. TICK. TICK. TICK.
• Depression and suicidal thoughts. TICK. TICK. TICK. Never ending.
• Difficulty concentrating. TICK. TICK. TICK.
• Fatigue and low energy. TICK.
• Food cravings, binge eating or changes in appetite. TICK. TICK. TICK.
• Headaches. TI… Funnily enough – no.
• Insomnia. TI… Yes, in my early 20s. Then I started a job that required a 5am start.
• Mood swings. TICK. TICK. TICKETY TICK.

I found a name to what I had. It wasn’t just in my head – it was, but it was something diagnosed, it was something I could use to explain to people. It was a term that could be googled for a proper summary.

Great! I have a name, I worked on getting a diagnosis. Now what? What do I do?

My PMDD – What worked and what didn’t

Medication didn’t help. They did to a degree – they helped for the underlying depression of trying so hard to be female, and straight, and all the things I now know that I am not, but once that leuteal phase came back I was hiding myself in the bedroom so I would stay away from sharp objects. I have since lost count of the SSRIs I have taken to the point my body no longer tolerates them.

SSNIs didn’t help. Over the counter PMS medications like Premular didn’t help. I tried telling myself they did – but screaming at Sydney traffic to and from work in my 30s tell a different story.

Holistic therapies didn’t help me. I wanted them to, so badly. Meditation, not medication came back into my life and the placebo effect wore off quite quickly. Herbal supplements didn’t help. Changing my diet didn’t help.

I had weight loss surgery on my 35th birthday. Dramatically losing weight didn’t help.

At 28 I asked about a hysterectomy. Having done my research, PMDD is about the hormones released. Ovaries produce hormones. Perfect – lets remove them! Let me be free. I want kids, but I also don’t want them to experience trauma because their mum has PMDD which is yet to be under control. I’m happy to not have children if it means I can be free from this psychologicial trauma my body is putting on itself.

Sorry, no, you might change your mind.

With each new GP, I asked again. With each gynacologist, I asked again.

Sorry, no, you might change your mind.

What if your husband wants children?

It saddens me that the medical community still has this mentality that womb-owners must want children. Don’t get me wrong – I did, and have, at various points of my life. I have been convinced that children are still coming for me, that I will be a parent to something human, only to realise later that it isn’t the future that I am feeling. Remember that blink of pregnancy I mentioned earlier at 21-22?

I can’t speak for everyone else – once I saw my PMDD getting worse after coming out of a few closests (environmental – we lived in a house with hidden Black Mould) I decided I did not want to impose my trauma on children of my own. That still wasn’t good enough reasoning.

My PMDD – Things got worse with age

Fast forward through the trauma of medications that don’t work, pretending I’m straight, accepting I’m non-binary, leaving my ex-husband, finding a new partner, accepting I’m a lesbian, other medical trauma and life…

PMDD did get worse with age – but it also got worse after we lived in a house for three years with hidden black mould. Living in the Black Mould house impacted everyone under that roof differently, however with me it primarily focused on weight gain, development of allergies and anaphylaxis, and a lead up to Suicide Attempt #4.

It happened in quick succession – first our house was broken into, the car I had for six whole months was stolen, driven 6 hours away and set on fire. Two weeks later I developed overnight anaphylaxis to Naproxan (ie. Naprogesic, the only mediction strong enough to help with the crippling period pain that would radiate from my lower back down to my toes). I was fine one day, and hospitalised the next. By my next cycle, I knew something was wrong when I was convincing myself that it was time to join my Gods and Ancestors on the other side of the Veil.

I admitted myself into our local Mental Health Facility. It was a sensory nightmare. I was woken to unknown staff lingering over me asking me if I was still suicidal. I lasted there one night.

I was kidding myself, but I had to – I convinced myself that I could manage the two weeks of hell to enjoy the two weeks of non-PMDD. Anaphylaxis took that away. My period pain continued to worsen, and nothing helped.

I was down to one good week.

My PMDD – how Anaphylaxis became a blessing

Approaching my 40s, now a lesbian with a partner of a womb of their own (if we ever did choose to have children), I set out asking for help again. And I honestly didn’t think the help would come from a Doctor in our overly-conservative town in regional NSW.

My partner and I went in to see a new GP – female, my age group, and honestly my last hope.

I cried in her office. I explained my medical journey – the period pain, the PMDD, the suicidal thoughts that would not leave me alone. The constantness of it all. The medications that stopped working. The holistic therapies that were no longer a band aid application. The only gynocologist in our area was of no help. The Mental Health stay that made me lose even more faith.

I am going to help you, but you will not find help here in town. We need to look elsewhere.

I cried in the car. I was heard. A GP – a FEMALE GP – heard me. I wasn’t overlooked, I wasn’t dismissed.

With my next visit she said she had found a specialist in Sydney that was worth a try, and gave me a referral. Two months later I received a phone call that my referal had been Triaged, and I had an appointment at the Women’s Health & Research Institute of Australia. I cried with relief in the cafeteria of St Vincents Hospital while my partner was undergoing her own medical procedure to help with her own diagnosis.

The appointment was a success – and I left feeling overwhelmed and excited and my goodness, I had to phone my Mum to tell her the good news.

I was going to start Chemical Menopause. The first month is going to be Hell, but each month I would get a disolvable implant of Zoladex which would stop my periods, shrink my ovaries… and if chemical menopuse works for you, then we know it’s PMDD. If it doesn’t work, then there’s a different issue.

Spoiler alert – it worked. Because it worked, I was placed on the Public Waiting List for a total hysterectomy with bilateral salpingo-oophorectomy at the Royal Women’s Hospital in Randwick (Sydney). Cervical ultrasounds confirmed adenomyosis and fibroids, and there was talk of possible endometrosis.

My PMDD – Chemical Menopause and Hell Month

Hell Month is PMDD on even more crack. It was a month full of internalised and outwardly expressed rage. It was constantly wanting to drive the car into this one particular tree on the drive home from work. It was the unyeilding desire to skin myself alive.

It was arguing with the world because the sun decided to rise.

The national shortage of Estrogen patches I had been prescribed didn’t help, so after speaking with my GP during my next injection appointment (I did not want to administer the injection myself) I began Estrogel – Estrogen in topical form. The change was instant.

If PMDD is a Level 10/10, Hell Month is a 15/10 and the HRT throw back took everything down to a Level 1-2 humm… my brain wasn’t completely quiet as I was still teetering on suicidal ideation, but my goodness it was a change.

For fourteen months I said that Chemical Menopause saved my life. Every fourth Wednesday I had my injection, and every Day 6 I experienced one day of hormonal tomfoolery (because that would have been ovulation day). I was able to get on with life.

With every injection I gained a minimum of 1kg. That was fine, it was the price I accepted to pay for the mental stability.

As injection 13, 14, 15 came along, the Zoladex started to wear off a little sooner and sooner. PMDD started to slowly return. I kept looking to that date on the calendar where everything would change.

My PMDD – My Cure

On Thursday 19th September 2024 I underwent my dream surgery – the total hysterectomy with bilateral salpingo-oophorectomy. An amazing team of surgeons performed a key-hole surgery and removed my ovaries, tubes, uterus and cervix. While I knew I had Adenomyosis and fibroids, they also found exidence of old and new Endometrosis.

Despite screaming in pain from the cathetar feeling like a burning UTI as I was wheeled into the High Care Unit, I felt different. My brain felt different. I did an internal scan in between sobs of tears and it was gone – the constant nag of suicidal ideation was gone.

In between sobs I cried out to those in the room – I AM DIFFERENT! MY BRAIN IS DIFFERENT! It was so important for all those in that room to know, to understand, the crying was fundamentally from the burning sensation of the catheter. The surgery worked.

I was cured. I AM CURED. This has been the cure I had begged countless people with medical degrees for over a decade.

There was jokes and talking that the change in my mentality, and how I felt within self was down to the medication I was in whilst recovering. Endone is good, but I don’t put it down to pain killers.

The HUMMMMMMMMM of negative self talk, of the ideation, of the nagging anger just ready to burst at any moment, at any one… is gone. I am no longer the kettle on the stove, past boiling point, waiting for the flick to switch, or for someone to turn off the gas.

I am ten days post-op and I have been keeping track and I can say with honesty, that the only time negative self talk creeps in is when I am over-tired because I have done too much when I should be recovering and resting. I have not felt the need, the desire, the tickle of a thought regarding self injury, self mutilation, or suicide. I have not had a single craving for food, instead I am losing weight.

I have not wanted to leave my partner, rather it’s been the opposite – I am free to express myself as I should have been all along, instead of being so exhausted from keeping that PMDD-self in check. I do not want to set the world alight. I don’t believe I’ve lost my temper yet, but I am human and AuDHD so I’m sure I will at something of worth.

I have not been angry at the sun for rising.

Please, keep fighting.

We are lucky in that there is more and more awareness of the condition. In my earliest found blog post about it, it was suggested that it effected between 3-5% of women. We know now that it is closer to 10% of ovary owners, and up to 90% of ovary owners who are neurodivergent.

Keep looking for new GPs/Family Doctors. Look for ovary-owners with a medical degree in the under 50 age bracket who are more inclined to listen.

Ask about Chemical Menopause.

Please keep fighting. I have lost friends to their own hands because they were unable to access the help they needed.

I am thankful that I never lost myself.