PMDD and Me - Josie shares her story to help others
Have you heard of pre-menstrual dysphoric disorder (PMDD)?
It's a very severe form of pre-menstrual syndrome (PMS) and one woman who struggled for years is now on a mission to raise awareness and prevent other lives being blighted as hers was.
Josie Burden endured years of misdiagnoses and inappropriate treatments, became suicidal and paranoid and missed out on family life after her daughter was born. Finally diagnosed with PMDD in 2020, she was able to access hormonal treatment and surgery which has restored her mental health.
Josie shared her experiences with health and care colleagues working to implement a new model for supporting people with serious mental health issues in Devon. Her story highlights how essential the focus of the Community Mental Health Framework (CMHF) is to ensure people receive the correct support, treatment and diagnosis, by removing barriers between services and organisations.
Josie said: Unknowingly, I suffered with severe PMS from the age of nine when I started my periods. Every hormonal event from then on triggered a decline in my mental health and severity in symptoms.
The birth of her daughter in 2018 led to postnatal depression, anxiety and the start of psychosis, exacerbated by then-undiagnosed premature ovarian insufficiency (POI) and PMDD.
The more unwell I became the more withdrawn I became. I barely saw anyone other than my immediate family, and I found that excruciating. I left my job and never returned. I self-harmed frequently, became extremely suicidal and dissociated from the real world. I truly believed a relative was trying to steal my daughter. I thought people were watching me when I left the house and I had severe intrusive thoughts about myself and others. This intense paranoia became so strong that I didn't leave the house on my own for nearly three years.
Over the years Josie was misdiagnosed with cyclomythia and emotionally unstable personality disorder, made to feel like 'an inconvenience', and told it 'was all in her head'.
In May 2019, she was able to access high intensity online Cognitive Behaviour Therapy (CBT) through Plymouth Options, which led to 14 months of psychotherapy.
I was only able to use the skills I had learned for a few weeks and then I would become irrational, severely hopeless, consumed with rage, self-harm and completely detached from the world and everyone close to me. I felt like two different people, something I have felt for a large portion of my life, only this was magnified.
PMDD is not a hormone imbalance. Instead it is a severe negative reaction in the brain to the natural rise and fall of estrogen and progesterone. It causes a range of emotional and physical symptoms every month, during the week or two before a period. Some of the symptoms include insomnia, severe anxiety, severe paranoia and self-harm. It affects one in 20 women and AFAB individuals, and takes an average of 12 years to get a correct PMDD diagnosis.
In 2020, I was finally diagnosed with PMDD by a private gynaecologist and menopause specialist and my NHS gynaecologist agreed to a chemical and surgical menopause as treatment.
Hormone injections and intensive psychotherapy (GNRHa) followed, and after five extremely debilitating and distressing months, Josie was accepted for surgery to have her ovaries removed. This, along with continuing hormone treatment and therapy, paved the way for a return to health and a life which Josie could not have imagined for herself.
She married last summer and is an ardent campaigner to raise awareness of PMDD, presenting her story to health professionals across Devon. She is also keen to raise the profile of menstrual wellbeing in schools.
And she's at university: I left school at 16 at since then never had a job for more than 18 months because of my PMDD. Now I'm in my second year at Marjon doing a degree in psychotherapy. I'm absolutely loving it and Marjon have been amazing with all the extra support they give me.
She studied online to get enough credits to apply for university and sees a future using her lived experience alongside her training to support women professionally.
I spent two years of my life desperately contemplating what would do more harm to my daughter, having me as a mother or her knowing I took my own life? Thankfully, I had my mum who took extended absences from work as a mental health nurse to care for me and my daughter. I truly believe without her, I would have taken my own life or worse, harmed someone else.
I hope by sharing my story I can inspire others and show them with the correct support, treatment and diagnosis, you can improve your mental and physical wellbeing.
I also hope that health professionals take away that although my history is complex that does not make me complex. I am just a person who had a severe and terrifying mood disorder that was exacerbated by post-natal anxiety and premature menopause. I was not believed and I was continuously made to feel that I was the 'problem'.
Josie looks back over her years of struggle and sees the years of therapy, the grief felt over a life missed out on, the precious time with her daughter lost to illness, and the sadness at the loss of her fertility.
But she added: I also see the resilience I have gained and the inner strength it has taken to accept and go ahead with surgery that left me infertile. And the huge amount of inner work to become the positive and empowered woman that I am now. I am extremely lucky to still be here today to tell my story.
Ian Veale, Directorate Manager, Adult Community Mental Health Services at Livewell Southwest, added: Josie's story underlines what we are doing in CMHF. It shows why we can't just have strict pathways and services, we need to have curiosity about what is happening, really listen and guard against funnelling people into a quick diagnosis and treatment.
If you've been affected by anything in this story and would like support, please visit the following websites: