Amy's Story

My name is Amy. I am 29 and a PMDD warrior.

My Journey began when I started my period at the age of 13. I started to become very emotional and I seemed to have no control or emotional regulation.

Throughout my teenage years and early twenties I was very erratic. I would be severely depressed and then really high and happy. I was tested for Bipolar and BPD and diagnosed with BPD.

I then went through Dialectical Behaviour therapy, Psychotherapy and many other forms of therapy but nothing seemed to change my ups and down. Until 3 years ago my mum started to notice that my ‘episodes’ were always just before my period.

I am very lucky to have an amazing best friend and therapist who also supported me and tracked my cycle with me. Then another friend showed me an article in a magazine about a girl with PMDD and I just knew that was what I had.

Over the next year I began to track myself and really noticed that I would spiral badly in my luteal (PMS) phase. I went to the doctor and they put me on Yasmin, a contraceptive pill to help my moods level out. Unfortunately, the pill started to clot my blood within a few months, so I had to come off of it. Coming off of it was very difficult and caused me to have more extreme anxiety than I had ever felt.

I had gone from no tablets to being on blood thinners, Anxiety medication, stomach liners and given an inhaler as I was struggling to breath because my blood was thickening. I then got a UTI infection and felt I was overwhelmed with all these medications. So, after a week I trusted my body and refused to take anything else. Within another week I began to feel physically better and started my mission to look at how to holistically heal my body and mind.

I have always been a firm believer that my body can come back to homeostasis but I am not naïve to think that this is an easy task. It takes a lot of time and energy.

Whilst I was doing this, my therapist referred me to a Hormone Clinic in London.

I began to read into cycle syncing, researching herbal remedies, vitamins and minerals and tracking everything within my luteal phase.

I notice my most debilitating symptoms were extreme fatigue, paranoia, anxiety and suicidal thoughts. I also noticed I struggled to feel any level of connection to anything around me as I went from day 4 to 1.

So I began to observe my thoughts, lucky for myself I had travelled a lot over the years and stayed in Buddhist temples and silent retreats so I know how to observe my thoughts and meditate already.

I started to see that the fatigue would cause brain fog, leading to feelings of shame. The shame would cause me to feel paranoid that people didn’t like me, that they thought I was lazy and useless. These feelings would lead to me having suicidal thoughts, like i should just give up, I’ll never change, life is to hard.

So I began to look up the best herbal remedies for extreme fatigue and brain fog.

I started to look at my cycle as a test each luteal phase was the practical and then other phases I would observe what had happened in depth. This was not easy, I would cry a lot, I was very scared of my ability to change and spiral but I knew I had to change it.

I tested for vitamin and mineral deficiencies and found nothing wrong. Then I found Primrose Oil and B6 tablets and began to take them in my luteal phase as well as Cod Liver Oil and Magnesium. The combination of these 3 seemed to alleviate the fatigue and anxiety about 70 %. Which was amazing and allowed me to work on the other symptoms: paranoia and suicidal thoughts.

By this point, I had finally heard back from the Hormone Clinic who unfortunately refused me because I refused to take any more medication. I will say, I am not against medication but it doesn’t seem to work well for my body. I was angry but I knew I needed to and wanted to figure this out within myself, working this out in a holistic way.

My next step was building a daily morning routine to support my mental health and self love.

I was now 28 and I was very aware this wasn’t my fault, this was a mental health condition, however, having spent my life in chaos due to my emotions. I thought processes and self belief were really low. I was ashamed of myself. I had struggled to keep jobs down for years because I was ill and wouldn’t be able to get out of bed at certain times of the month and I didn’t know how to explain myself.

My romantic relationships were really difficult too and honestly consistency had felt near to impossible but I always loved exercise, writing and meditation. So, I created a morning plan, to get up at 6am, work out, have a cold shower, do meditation, write a gratitude list and journal. Each part of this plan was strategically placed for a certain symptom.

I worked out to motivational music to get my head into self belief, I had a cold shower to help my anxiety and support my ability to endure discomfort (because my emotions can felt extremely intense and very uncomfortable). I meditated to focus my mind, I wrote a gratitude list to remind me of the simple good in the world so when I am feeling suicidal I can remember and I journaled to connect to God because I believe God can sustain me when I can’t.

I started this the day I came on my period to build momentum and I saw a profound difference!

I love nutrition too so then began to focus on food a bit more. I don’t like to stress this too much because food has been a big disorder for me. But I try to eat as good as I can and not allow myself to feel guilt for comfort food. Then, lastly, I started doing somatic therapy/tantric Yoga. Which has taken me to a new level. Each woman is different but I have a lot of trauma which is activated again and again in my luteal phase. Meaning I needed to move the trauma through my body which I have been doing and still do weekly and sometimes daily. I cry when I need to without placing a story behind it. I scream when I need to without placing a story behind it. I dance and flow the emotions through my body, because emotions are just energy in motion and I have learnt not to be afraid of them.

The more I did this and connected to my body the more powerful my feminine energy became. I started to notice that in my luteal phase, I would see visions and dreams and get very strong wisdom and intuition that would lead me to support other women.

I began to read into the divine feminine and it became clear that the menstrual cycle is not a burden but a superpower unutilised. Then 6 months ago I officially got diagnosed with PMDD and got offered tablets again. I refused and told the doctor about all I had learnt, unfortunately it wasn’t taken well and this was when I decided I wanted to do this for work. Now I support women like myself to find their intuitive toolbox and power.

I do still feel very emotional a lot in my luteal phase, I still do feel fatigued, anxiety, paranoid and sometimes suicidal BUT I have learnt, for the most part how to listen to my body through the flow of my cycle and now I see these feelings and thoughts as signals rather then problems. I accept my diagnoses and have learnt to work with it rather than fight against it. And I am no longer ashamed of it.

Amy run's the @femininerhythm she is a Wellness coach, Tantric Yoga teacher and Moon Ceremony facilitator. Amy has suffered with PMDD since age 13 and her mission is to support and empower women with her testimony and professional experience.

My PMDD Story

When I was 11 years old, I started my period. My life hasn’t really been the same since.

Throughout my teenage years and into my early 20s, I struggled immensely with low mood and irritability for 2 weeks out of every month. For years I thought there was something fundamentally wrong with me. am a caring, empathetic person, but for two weeks out of a month, I didn’t feel any connection to that part of me. It made it hard to know who I really was, because no matter what I did, nothing seemed to change. Ultimately I’d always end up feeling that intense low again. For two weeks out of every month, I was in so much emotional pain that on many occasions I thought about harming myself just to make the feelings stop.

When I was in my teens, my cyclic moods were attributed to me being a stroppy teenage girl with raging hormones. I always assumed it would get better as I got older. As I did get older however, my cyclic mood swings and irritability persisted. This began to impact my work as well as my romantic relationships and often left partners struggling to cope with my sudden, and apparently unprovoked changes in mood. My coping mechanism during this time had always been to isolate myself, which led to my first diagnosis of agoraphobia and social anxiety. In my early 20’s, I sought further help and was referred to mental health services. Based on the fact I experienced mood swings and had experienced historic trauma, I promptly received a psychiatric diagnosis of EUPD. I accepted this diagnosis for a number of years, despite the fact that 2 out of 4 weeks of the month, I felt stable emotionally and did not experience any mental health symptoms outside my general anxiety. Looking back, I feel incredibly frustrated as I distinctly remember telling every healthcare professional that my mood swings were NOT a persistent challenge and were cyclic in nature. The diagnosis of EUPD created a road block for many years; any help I attempted to access meant a referral to psychiatric services, and based entirely around my EUPD diagnosis, which proved unhelpful.

I have always been interested in hormones, and studied biological sciences as an undergraduate. In my mid twenties, I pursued my dream of becoming a mental health nurse. This began to form my interest in women's health; particularly how hormones, and sensitivity to hormones, can impact on women’s mental health. It was around this time that I learnt about PMDD. To test my theory that my cyclic mood swings may correlate with my menstrual cycle, I began to chart both my moods and my periods. I have continued to do this for the past 4 years. Interestingly, I became pregnant during this period, and during my pregnancy, my cyclic moods were entirely absent. To me at least, this provided unequivocal evidence that my mood swings were affected by the luteal phase of my menstrual cycle. I began to read more and more about PMDD, and had my lightbulb moment at 28. For years, I hadn’t even acknowledge that any of this could be related to my menstrual cycle. Looking back, it seems so obvious. I took this information first to a male GP who I had to explain the disorder to. I then took it to a female GP, expressing that I felt I was actually struggling with PMDD. She was the first person to acknowledge that I know my own body, and agreed based on my symptoms and documented mood logs, that I have PMDD.

I continue to log my moods, as it allows me to predict when my luteal phase will be. This has been my biggest saving grace, as due to the severity of my own PMDD, I have unfortunately had to learn to adapt my life around it. I am unable to take combined contraceptives, but I am aware that a number of studies note the value of these in PMDD treatment. As a healthcare professional myself, I have huge concerns that women are being referred to services that are not suitable. Healthcare professionals need to be better educated on women's health issues, including PMDD.

About the Author: My name is Jo, I am a mental health nurse based in the North West of England. I am passionate about using my position as a nurse to inform others about women’s health issues, including PMDD. I am also an advocate for autistic and neurodivergent women.

Surviving PMDD

If you’re reading this you probably already know what PMDD stands for and I’m just 1 of 1 in 20 women and AFAB individuals that live with a Premenstrual Disorder. As a child I was diagnosed with Premature Adrenarche, an overproduction of androgens (sex hormones)

I first started my period aged 10 but I hit crisis with mood symptoms around

age 13. There is no credible evidence suggesting PMD’s and Premature Adrenarche are linked, but a sensitivity to hormonal fluctuations has been present my entire life. 

The symptoms of PMDD for me then, were similar to as they are now, today,

extreme mood fluctuations including: rage, tearfulness, suicidal ideation, panic

attacks, fatigue, migraine, insomnia, intrusive thoughts, and more.

The trouble with being a thirteen year old girl living with these symptoms in the early noughties was, everyone thought I was just ‘acting out’ or an ‘angry teenager.’ There was some acting out, there was also a suicide attempt (one of a few.) Looking back now I can see how prevalent a role PMDD played in my not wanting to be here, though at the time I was prescribed antidepressants and birth control and sent on my way.

It wasn’t until around ten years later that I approached my doctor again, armed with cycles worth of symptoms and research relating to PMDD. There was little information on PMDD back then and I remember my GP looking blankly at me, as if I’d plucked a random and seemingly fictitious diagnosis from thin air. She said my symptoms were the result of PMS and I’m sad to report, though appropriate diagnosis is improving, depending on who I see, it still gets referred to as such.

I’m now 34 and a mum of two. I have been tracking my menstrual cycle for over 15 years. I’ve tried every contraceptive available, bar sterilisation and many, many, SSRI’s both month round, and only during the luteal phase. PMDD, unfortunately worsened after each pregnancy and most dramatically since the birth of my second child. I’m eighteen months postpartum now and have been struggling to find yet another treatment capable of holding me firm.

I also have a fibromyalgia diagnosis, and in recent years particularly, symptoms of the condition have been much less manageable during the luteal phase. Allergic reactions, chronic pain and flu likeness increase around ovulation, which is also when intrusive thoughts and panic attacks start to cripple me.

I’m sensitive to what feels like everything, for two weeks a month, sometimes longer, and it’s no fun. 

I know that sounds like a lot, and none of it very reassuring if you’re here reading this for tips on PMDD management, but it’s also important to note, whilst I am not that much further in my quest to being PMDD free, I definitely have learnt a few tips and tricks to help me manage during the luteal phase. 

Over the last twenty years I’ve tried many SSRI’s. I’ve seen therapists and counsellors on and off too, but I always seemed embark on treatment after a traumatic life event, as opposed to particularly for PMDD. The trouble, if I think about it, is that PMDD has been the cause of many of these traumatic life events. And hell would break loose if I drank alcohol during the luteal phase. I’ve been arrested, I’ve fallen out with friends, family members, employers, and I’ve taken unnecessary risks and found myself in situations I wouldn’t wish on my enemies. Instead of relating these life lapses to PMDD though, I always just thought I was a bit of a fuck up. Unable to bear rejection, constantly seeking validation but never actually getting it, have all been patterns of behaviour for me. It’s true I’ve always tracked my symptoms, but I did it as a way to predict my next cycle as opposed to a tool that could help me heal. Until recently, I’ve always been a person who gave the bare minimum in therapy while expecting maximum results. Then as soon as I would start to feel better again (usually during follicular) I would shut down and quit. 

Sadly, it took me a full on psychiatric breakdown after my son was born and a whole year of therapy to realise it’s not just my personality. PMDD is not who I am. It’s something I endure. 

During that year I completed a 3 month course of Dialectical Behaviour Therapy (DBT) of which I am now a huge advocate. DBT is great for PMDD because it focuses on distress tolerance and offers skills that are perfect for use when in crisis. I’ve also recently been seen by a gynaecologist who is familiar with treating those with PMDD. As a result of this I now use HRT in combination with SSRI’s as a treatment. I’ve been doing so for seven months and for the last two cycles have seen positive results. The reality is PMDD is a complex disorder. It takes prisoners. It destroys self esteem, and hinders so much of our lives. No two people with the condition will experience the exact same symptoms. Your sanity may be questioned both by yourself and the people you love. But there is hope, a combination of treatment and the right support network is keys. Along with raising awareness of and providing insight to premenstrual disorders, because PMDD awareness is suicide prevention.

Written by Steph Cullen

Steph Cullen is a writer, fundraising co-ordinator for IAPMD and PMDD survivor. Steph has bravely shared her experience of PMDD with us, she is dedicated to raising awareness about PMDD.