Sandylee’s story

Sandylee is a 36-year-old registered mental health nurse based in London. Sandylee is also an NCMH Research Champion, helping to spread the word about our research. This is her story.

Hi, I’m Sandylee.

I enjoy interior decorating, gardening, reading and research, particularly within the field of mental health. One fun fact about me is that I gave birth to my son on my birthday!

Getting my diagnosis

I received my premenstrual dysphoric disorder (PMDD) diagnosis in January 2024 – after years of wondering, “What is going on with me? Do I have bipolar disorder, or borderline personality disorder?”

I came across PMDD while watching a YouTuber discussing her symptoms, and I remember thinking: “That sounds like me.” That prompted me to start noting down my own symptoms.

I noted my symptoms for around three months before seeing my GP, only to feel completely dismissed. He told me premenstrual syndrome (PMS) symptoms were normal. I left feeling defeated and on my own (again).

I continued noticing the pattern. I’d be happy and then, seemingly out of nowhere, I’d become tearful, angry, and irritable. Some days I’d have insomnia and on other days, I could barely lift my head off the pillow.

Keeping track of my PMDD symptoms

I reached out to my GP again, but this time I had more evidence. At this point, I was a mental health nurse student, so I documented my symptoms properly. I made sure I had around six months’ worth of information, including details about the shifts in my mood.

Finally, I was referred and asked to keep a diary for a further six months. Alongside PMDD, I also have endometriosis, adenomyosis, and osteopenia. It took over three years and a complaint for me to finally be seen and taken seriously.

I struggle with extreme fatigue, anxiety, panic attacks, and rage. I will go to bed tearful and wake up in a panic. Sometimes I will be completely fine and then suddenly it hits me.

“I find myself wondering where has this deep dark cloud has come from.”

I was just feeling so optimistic, and suddenly I am knocked down again.

I have also noticed that I make so many mistakes during my luteal phase. My concentration becomes incredibly poor.

I have lost friends. My romantic relationships have really suffered. Even the career I have worked so hard for has had to take a back seat.

We need research to improve treatment and support for PMDD

I have tried first-line treatments, from antidepressants to my most recent experience with chemical menopause, and so far, nothing has worked for me, and the side effects have outweighed the benefits. Due to the nature of my symptoms, counselling hasn’t helped me much so far.

However, I have done my own research into what might work for me.

“I have watched some incredibly strong women speak out about PMDD and reclaim their lives.”

I have joined focus groups and made lifestyle changes.

I used to isolate myself, but I have learned that isolation can make things worse. At the same time, being around other people can sometimes be triggering, I have worked out who my safe people are, and I lean into them.

Every month continues to be a battle. I build myself up, only to be torn right back down again. When I feel good, part of me worries that it won’t last very long. That is what the cycle really feels like.

“I do not fight the tears anymore.”

I used to get so worked up when I found myself lying in bed unable to do much. Now, I will put on one of my favorite series and order my favorite food. I know tomorrow will be worse, but I will deal with tomorrow when it comes.

I’m also preparing to begin an MSc in Psychological Therapies, with the hope of using both my professional knowledge and lived experience to support and advocate for women experiencing similar challenges in the future.

Why I took part in NCMH research

I found out that the National Centre for Mental Health is doing research on PMDD called PreDDICT.

“I would urge anyone who has experienced severe PMS or a diagnosis of PMDD in their lifetime to take part so we can provide a proper healthcare pathway to support people with PMDD.”

Thank you to Sandylee for sharing her story.

Resources

• Take part in the PreDDICT study
• Download our PMDD leaflet 
• Take note of your symptoms using our PMDD diary
• Become a Research Champion