Content warning: suicidal ideation, self-harm, violence, dissociative episodes, intrusive thoughts, trauma.
Please note: In today’s post I will be sharing my personal experience with Pre-Menstrual Dysphoric Disorder or PMDD. Part of me has been dreading sharing the details of some of my pre-treatment thoughts and behaviours, but I believe it is important to talk about the realities of how debilitating and frightening this illness can be.
I am putting this information out there in good faith that readers will recognise the issues I faced as symptoms, the same way they would with any other medical condition. While I firmly believe that it is my responsibility to monitor and treat my PMDD to limit the impact it has on myself and others, elements of this condition are outside of my control.
Treatment options are limited, come with side effects, and are not 100% effective. It can also be very difficult to be diagnosed and treated effectively for PMDD as some doctors do not yet recognise it as a separate diagnosis from Pre-Menstrual Syndrome (PMS), and even if they do, they may not understand the potential severity of its psychiatric effects.
Differing opinions are always welcome, just be respectful.
Finally, and as always, this is not medical advice. I hope to spread awareness through my personal experiences paired with explanations backed up by reputable resources, but this will never be a substitute for talking to a medical professional.
My PMDD Story
I badly wanted to be able write this article from a light hearted perspective. I wanted to be able to poke fun at myself and all the crazy things I’ve said and done. In fact, the title of this post was originally going to be: Craving Violence? You Could Have PMDD!
I wanted to be able to laugh at the fact that this sweet, softly spoken girl from a sunny, laid back town in Australia was an unlikely vessel for the violent beast that is PMDD; but in reality, there is nothing funny about what I, or the millions of other PMDD sufferers go through.
15 years ago, my life was going pretty well. I had just started high school, was doing well in my classes, making new friends, and was recognised as a kind, gentle and charitable person; the one that everyone came to for support and advice. I was by no means a perfect angel, but I think it’s important to understand my character in order to appreciate the shock value of what happened next.
I started to experience episodes of severe anxiety. Everyday tasks started to feel overwhelming, for example, sometimes getting ready for bed at night would reduce me to tears. I also experienced stretches of being completely unable to get along with anyone in my life. I started to interpret casual comments as personal attacks. What’s more, I could barely control my anger in response to these perceived slights. I would come home from school only to scream and hit my pillow or even myself in order to release the tension of holding in this ferocious rage all day.
A year later, I started seeing a psychologist for unrelated reasons. She didn’t seem to think it was unreasonable that I was having profound anxiety. It had been a rough year. I had started experiencing chronic pain, repeated hip and shoulder dislocations and illness in the family. I was also dealing with bullying and harassment both in person and online because of my good grades and gentle demeanour.
We worked on some techniques to manage depression and anxiety. It was helpful to have an objective person to talk to about the challenges I was facing, but I didn’t really feel like I was making much practical progress. What was odd, was that my mental health seemed to go through long peaks and troughs that didn’t seem to be related to the events happening in my life.
In upper high school, things took a dark turn. My anxiety and anger problems started to get much, much worse. I began acting them out by harming myself or hitting things around me. I also began to have dissociative episodes where I would become so submerged in a negative memory that I would speak out loud about what I was seeing without realising it. Frighteningly, when I regained conscious thought I would sometimes realise that I had broken something around me. It started with small things like pens and pencils and eventually progressed to bigger objects like coat hangers and glasses. Sometimes I would find teeth marks or bruises on my arms, or realise that I had pulled some of my hair out.
I started to become paranoid and weighed down by a constant sense of danger. I feared talking to people, walking outside or sometimes just getting out of bed. I also started having intrusive thoughts about causing more serious harm to myself or others. I also started to have more frightening dissociative episodes, where I would perceive that I was being spoken to by someone who wasn’t there, usually a particular person that was linked with a (true) traumatic memory.
During the period in which my symptoms were escalating, my mum had already started to talk to me about Pre-Menstrual Syndrome (PMS) and how she felt that my out of character behaviour was only lasting two weeks out of the month.
She also told me that at the age of 4 (!) I had two episodes of menstrual bleeding which were later attributed to Autonomous Functioning Cysts. She said that a few days before these episodes I had a significant change in temperament, turning from an easy going child into one that was highly irritable and quick to anger.
She said that those sudden changes in character were reminiscent of what was happening now and that it had been worse since I had started using a particular contraceptive pill for Menorrhagia.
Looking back, what she was saying should have been a revelation for me, but at the time I was simply not in my right mind and was unable to recognise the importance of what she had observed. I was dealing with other serious, physical health issues by then, and was also frightened of coming off the pill because of the f*cking enormous blood clots I had been passing without it (think up to the size of a post-it note!).
I dabbled in a few of the first line treatments for PMS, such as supplements and different contraceptive pills, but it wasn’t until the end of my undergraduate degree that I finally had enough sense of self to have a frank discussion with my doctor about just how much my menstrual cycle seemed to be affecting me.
I sobbed uncontrollably as I opened up for the first time about the self-harm, intrusive thoughts and the fact that I felt like I was going crazy and didn’t seem to be able to cope with “mood swings” normally, like other women did.
Fortunately, my doctor recognised the seriousness of my situation and referred me to a Gynaecologist with experience in treating cases like mine. She was very thorough in taking my medical history and the specifics of exactly how and when these cyclical symptoms were affecting me. She asked me to withdraw from the medications I was using to (barely) keep my symptoms at bay, track my progress and return to her six months later.
It was the hardest six months of my life. It turned out that using hormonal contraceptives was doing more for me than I thought. Without them, I was plunged into a deep depression. I was teaching at a school that I loved at the time, but was frequently coming close to crying in the staff room in between my classes. I was scared to go to the train station alone at night after my concerts, because I’d have the urge to jump onto the tracks.
While in retrospect I definitely should NOT have let this go on for as long as I did, it confirmed two important things:
1. My psychological/psychiatric symptoms were only occurring between ovulation and menstruation (although my mood was often low when I got my period because of what I had been through in the preceding weeks).
2. I was only averaging about 4-6 days a MONTH without uterine or pelvic pain.
What. The. F*ck.
I couldn’t believe what my notes were telling me…was my life really this…bad? How did I let it get to this stage? How did my doctors let it get to this stage!?
I realised I had been a victim of own resilience, forcing myself to go to school or work year after year as my pain got worse had made it seem insignificant to doctors. My desire to not have others worry about me and therefore not opening up about the self-harm and suicidal thoughts had lead my psychological complaints to be written off as regular PMS.
Now don’t get me wrong, PMS sucks too. Even garden variety mood swings can be a real pain, along with the breast and back pain, bloating, nauesea…uhh! I’m absolutely not saying that PMS sufferers have nothing complain about. They too deserve better education and treatment options to minimise how much it impacts their lives…but PMDD is a different beast.
I was finally diagnosed with PMDD upon returning to the Gynaecologist and she immediately loaded me up with information. The most important of which was a warning about the associated suicide risk. She urged me not to stay unmedicated with how unwell I had been feeling and to go straight back to a doctor if I was ever prescribed medications that provoked the same depressive symptoms.
Although the exact figures are not known, it’s estimated that around 1 in 20 people who menstruate have PMDD, and that 30% of those will attempt suicide at least once. Heartbreaking.
I was also given some information on the key symptoms of PMDD and how it can be distinguished from PMS:
PMS and PMDD may both share physical symptoms such as bloating, breast tenderness, headaches, fatigue, difficulty concentrating and sleep disturbances. They both also have the potential to cause psychological symptoms such as depression, anxiety, irritability and a sense of overwhelm.
PMDD is specifically defined as when these symptoms are severe (particularly in regards to reactivity and irritability) and significantly impair a person’s ability to lead a normal social, personal or professional life. In extreme cases, PMDD also has the capacity to cause psychosis, paranoia and dissociation.
(Anecdotally, I am now also aware of several other symptoms described by those who have been diagnosed with PMDD. These include insomnia, binge eating, spontaneous crying spells and flu-like symptoms.)
Unsurprising, it is very common for PMDD sufferers to be misdiagnosed with Bipolar Disorder. This is why it is important take note of the second part of the diagnostic criteria: that symptoms must begin 1-2 weeks before menstruation and resolve within the first few days of bleeding. More information about PMDD and how to avoid a potential misdiagnosis is linked below.
Although the exact cause of PMDD is not known, there is emerging research demonstrating that it could be due to either abnormal hormone levels or an abnormal reaction in the brain to the normal hormonal changes that happen after ovulation.
Some research shows that people with pre-menstural mood disorders have abnormal serotonin neurotransmission and a lower density of serotonin transporter receptors. More information is linked below.
My gynaecologist and I decided that the best thing for me to do next would be try a high progesterone contraceptive, and I had a Nexplanon inserted into arm shortly afterwards.
At first things seemed to be going really well. The nexplanon was the first contraceptive to successfully suppress my ovulation and as a result I had very few PMDD symptoms. My periods did become quite erratic, but for me it was a more than worthwhile trade off.
Unfortunately, after about a year, my periods became very heavy and near constant, resulting in my new doctor recommending I have it removed. I was extremely dissapointed and scared. Not only had I just moved to a different country but I was also dealing with a slew of worsening musculoskeletal issues and was becoming completely overwhelmed by my new life.
Fortunately, the new doctor had a good understanding of the potential severity of menstrual health problems. She recommended the vaginal ring, as it released much lower dose hormones in a localised way, directly up towards the uterus. (The phrase “beam me up Scotty!” always springs to mind…but maybe that’s just me.)
This would be combined with a low dose SNRI (serotonin and norepinephrine reuptake inhibitor). This was a massive win for me as it not only improved my psychological symptoms in an unprecedented way, but also had the unexpected side effect of greatly reducing my Fibromyalgia pain.
Not long after I started this new regime I was diagnosed with Hypermobile Spectrum Disorder (previously known as Joint Hypermobility Syndrome) and discovered that taking progesterone is one of the best worst things you can do the increase joint laxity! Although age and genetics were also likely to blame, my gradual uptick in muscular skeletal problems over the past two years was almost certainly in part due to my use of the Nexplanon.
To make matters worse, the positive effects of the vaginal ring started to wear off after about 9 months, bringing us to the present day. While my symptoms are nowhere near as bad as they once were, I have had to keep gradually increasing my SNRI in order to keep the panic attacks and urge to self-harm at bay. I have also been passing more and more blood clots and experiencing more and more pain in between periods.
Frankly, I feel stuck. High oestrogen pills make me feel depressed, high progesterone pills make all my joints fall out of their sockets, and “intermediate” dose pills and non-hormonal methods don’t do enough for my pelvic and uterine pain. I can’t tolerate NSAIDS and don’t even get me started on all the side effects I have to deal with every time I up my dose of SNRIs…
Unfortunately, there is no happy ending to this story. I often find myself feeling hopeless over my lack of options and distraught over how health issues that primarily affect women continue to be downplayed and sidelined.
Sadly, I know I am not alone and that several serious health issues related to the menstrual cycle still carry stigma and are poorly understood by both the medical and general community.
For now, all I can do is get up everyday and make the choice to keep fighting. Surgery does exist as a last resort, but it is rarely approved for women my age and comes with its own drawbacks. There are still some other options I haven’t tried and I have an appointment with a new specialist this month to discuss these further. Although its frustrating and exhausting to spend month after month of my life putting new things into my body, enduring the side effects, waiting to see if they work and more importantly how long they will work for, I won’t stop trying.
I will never again roll over and accept a life filled with physical and emotional pain, or be a victim of our (sometimes) vastly inadequate medical system. I know that I, and everyone else who was cursed with ovaries, deserves better.
Please note: There is a lot of information online about PMDD and not all of it is good. Many sites that discuss PMDD are not updated as research evolves or may show clear bias towards certain “natural” treatments that will not work for everyone. PMDD requires a personalised approach.
Personal accounts can be very helpful for self-validation and even for finding lesser known treatment options. I still encourage you to look at many different perspectives on this illness, just with a healthy level of skepticism.
While this list of resources is far from complete, these are articles that I feel give a realistic and up to date account of the realities of having PMDD and provide helpful, relatively unbiased information on diagnosis and treatment.
MGH Center for Women’s Mental Health provides a clear explanation of the distinction between PMS and PMDD. It also explains the need to rule out other psychiatric illnesses which have similar features. It has an excellent summary of potential treatment options and current research into the potential causes of PMDD.
BMC Women’s Health presents an in-depth qualitative study into women’s experiences going through the diagnostic process for PMDD. It outlines the challenging nature of receiving a diagnosis and finding effective, personalised treatments. It also includes some potentially distressing accounts of the symptoms that some women experienced before diagnosis and the grief they carried after realising how much of their life had been lost to PMDD.
The Independent has an article that uses the personal story of ‘Sarah’ to highlight some of the more extreme symptoms of PMDD such as psychosis. It also outlines how a lack of education within the medical community has lead to many women receiving improper care or feeling stigmatised.
Mind provides advice on how to be effectively evaluated for PMDD and how to minimise the risk of being misdiagnosed. However, they fail to list some of the symptoms that occur in more extreme cases such as psychosis and paranoia.
The International Assocation for Pre-Menstrual Disorders has information on some of the specific issues faced by transgender individuals with PMDD and how the rest of us can be better allies.