I’m 39 years young and in a matter of weeks, I’ll be having my uterus, tubes, and ovaries removed. Not because of some aggressive life-threatening cancer and not due to any unbearable physical pain. In fact, my womb is in perfect working order, having housed my two healthy children, and servicing me with around 250 relatively regular, painless ‘normal’ periods. My ovaries are also in fine form, having produced just the right amount of hormones to regulate my body temperature, protect my heart health and keep my bones nice and strong. So why would I choose to have such a radical, irreversible and potentially risky surgery?
I live with a condition called Premenstrual Dysphoric Disorder (PMDD), a hormone-based mood disorder affecting around 1 in 20 women of reproductive age, the symptoms of which are severe enough to cause a person to want to end their life rather than continue to experience them.
Sadly 15% of all PMDD sufferers will eventually take their life or attempt to do so. The symptoms which typically only occur between ovulation and menses are largely psychological in nature, including severe depression, anxiety and irritability, extreme mood swings, difficulty concentrating, fatigue, insomnia, and a feeling of being overwhelmed and out of control. PMDD is severe enough to affect your ability to work, study and maintain interpersonal relationships.
The condition became an official diagnosis in the DSM-V in 2013 and scientists are only just starting to uncover the possible underlying cause of the condition. In early 2017 researchers at the NIMH made an important finding pointing to a dysregulated response at a cellular level to hormones estrogen and progesterone, in women who presented with PMDD. While this is a significant breakthrough that will hopefully lead to further research, funding, and treatments, it has not come soon enough for my uterus, tubes and ovaries.
I have reached my threshold of resilience. I can no longer bear the severe mental anguish that plagues me for two weeks out of every four. I am not strong enough to keep adding new therapies to my treatment regime only to continue being emotionally floored on a monthly basis. Continuous birth control, antidepressants, herbal treatments, dietary restrictions, exercise regimes, talk therapy, relaxation, naturopathy, vitamin supplementation, stress minimisation, ovarian suppression, GnRH treatment, hormone replacement therapy…… enough.
There is no ‘cure’ for PMDD. My hormone sensitivity will carry on post-surgery however, without the vicious cycle of rising and falling hormone levels that fluctuate throughout the menstrual cycle, my abnormal and severe reaction to them should, in theory, be largely avoided.
Some of my fellow PMDD sufferers will think I’m lucky, because I have already completed my family and don’t have to give up the ability to bear my own children as they have had to. Many will congratulate me on having my surgery approved, not because removing my reproductive organs is something to celebrate but because they know that the alternative is much worse. Others who have just discovered the reason for their cyclical turmoil, will ask themselves what hope they have if every other treatment option available to manage my PMDD has failed.
I ask myself if I have done enough, if my medical team have done enough. But how can I possibly be sure? There are currently no national treatment guidelines for the treatment of PMDD in Australia. I know because I asked. The Royal Australian and New Zealand College of Obstetrics and Gynaecology cannot direct me to one publication they have on the condition. The President of the Royal Australian and New Zealand College of Psychiatrists has cited a lack of research and the requirement of effort as the reasons why their institution doesn’t have guidelines for the treatment of PMDD. PMDD is not covered in GP training.
I will continue to advocate for PMDD awareness through the Vicious Cycle: Making PMDD Visible patient-led project and hope that in time the medical community will catch up to advances made in the field and in other countries such as the UK and Switzerland. But it will come too late for me. I have to move forward with the only way I know to cure PMDD – to remove my reproductive organs.
I will fall back from fighting for a cure for myself but will take up the charge to fight on behalf of others. We congregate in closed online Facebook support groups, telling each other to carry on when the load becomes too much to bear and reminding one another each month that ‘this too shall pass’. We find each other on Twitter and Instagram using the hashtag #pmddpeeps and share our knowledge in the hope we will minimise someone’s suffering even if only by a tiny bit.
This is how I connected with the other women involved in the Vicious Cycle Project. Most of them are based in the UK, where there are treatment guidelines and organisations such as the National Institute for Premenstrual Syndromes and experts such as Dr. Nick Panay. They have opened my eyes to exactly how far behind we are here in Australia. Together we have formed an army of sufferers willing to push for change, to do what we can to give other sufferers their ‘lightbulb moment’. The information that brings a realisation that they are not alone. That they are not crazy. That this is a real condition. That this is not just PMS.
But what good is all of this if pushing from the bottom up is not met with leadership from the top down? I am hugely encouraged by the National Action Plan for Endometriosis, the recognition that something needs to be done and the provision of resources to do it. It signals a change in the current climate surrounding women’s health issues. No longer will we be seen as hysterical or convinced that it’s all in our head. We will keep pushing for resources, research, policy and support for people living with PMDD with or without our ovaries and hope that the powers that be will hear our call.
Lynda Pickett lives on the south coast of New South Wales and is a loving mother to her two young boys. She has a postgraduate degree and permanent full-time teaching position but has been on leave since having children and being diagnosed with Premenstrual Dysphoric Disorder. She volunteers with the patient-led awareness campaign ‘Vicious Cycle: Making PMDD Visible’ and aims to raise awareness of the condition and improve the standards of care for PMDD sufferers in Australia and worldwide.