Strapped To A Rollercoaster You Never Chose To Ride: Living With PMDD

As part of PMDD Awareness Month, we interviewed four different women with the condition to better understand their lived experience. We wanted to share these conversations and really open up this space for anyone who is struggling with PMDD, or for those wanting to learn more about supporting someone in their lives who is.  

Can you describe what it’s like to live with Premenstrual Dysphoric Disorder (PMDD)?

"Living with PMDD can feel crippling. It’s like being strapped into a rollercoaster you never chose to ride. The emotions can be so overwhelming that they make you question your own sanity and sense of reality. At times, it’s incredibly isolating, battling with your own mind, unsure whether what you’re feeling is real and justified, or simply the result of shifting hormones. When I’m in the depths of it, I have to constantly remind myself this isn’t me, I’m not losing my mind my hormones are distorting how I think and feel. Even with that awareness, it’s exhausting. I feel completely out of sync with myself, like my clarity has vanished. Thoughts become foggy, emotions feel sharper and heavier. I can feel angry at everything at the world, at myself and intrusive thoughts that I would normally brush aside suddenly feel louder and more convincing.

I become deeply self-critical, questioning my worth in a way that feels frighteningly real in the moment.  It’s draining to constantly second guess your own mind to feel like a version of yourself you don’t recognise. There’s a loneliness in that . And on top of it all there’s the guilt having to apologise for behaviours and reactions that you don’t fully understand or relate to yourself."

Have you received a diagnosis? If yes, how was this process? If not, is there something holding you back or making this difficult?

"I received a diagnosis back in my final year of university. PMDD was not something I had much exposure to back then. For as long as I can remember I’ve really struggled mentally around the 10 days before my period. I’d never really made the clear link before my final year. I just knew that half of the month I would feel this way and then my period would come and the black cloud would lift and I would feel more like myself and have regained clarity. As I was struggling mentally in final year I was also tracking my periods more regularly. I noticed a clear pattern that these intense feelings were always the two weeks before my period.

I would say I was one of the luckier ones when it comes to diagnosis and my lovely female doctor at university was the person who said I think what your suffering from is PMDD. Hearing those words and reading about it I actually was quite emotional. For so long I’ve felt like I was a bit broken or overly emotional and not able to regulate myself properly around my periods. I had a lot of shame for my angry outbursts and uncontrollable crying which often made me weak. To hear that it wasn’t actually something I could control took a lot of that pressure away from me. It also made me quite sad for my younger self who held a lot of self blame because of this."

What have you found helpful in dealing with PMDD? This could be tools, techniques, therapies or other.

•⁠  "⁠I tried sertraline (SSRI) for it - which was effective to a degree it definitely helped get me out of the initial pits. I didn’t personally find it super effective as a long term solution. For some reason it interrupted my periods and caused them to become very infrequent this made it hard to have any real timeline as to when I could expect symptoms. 

•⁠  ⁠Tracking my periods so I know when I am in the luteal phase and when I can expect symptoms to arise has been a big help. It definitely helps to have something to refer to when I feel myself spiralling. 

•⁠  ⁠Rest and alone time - knowing when I’m expected to feel lower and providing a space for myself where I can lean into that and feel safer. My feelings are also exaggerated by lack of sleep 

•⁠  ⁠Light exercise and moving my body - even getting outside for half an hour when I am feeling particularly negative and low helps 

•⁠  ⁠Trying to eat whole nourishing foods - I haven’t got this perfect but I know that 

•⁠  ⁠Sleeep!!! I need at least 8 hours of sleep a night and in those weeks before my period sometimes even more."

How can people around you support you?

"I think the best thing people can do is show an understanding and compassion especially during the luteal phase. Having friends that you  can say to that  I’m not feeling so good right now and low energy hanging out situations. My boyfriend is also aware of my period cycle so he is able to help me when I am feeling PMDD symptoms and remind me that I am in the high risk phase.  I have a number of close friends who also struggle with PMDD and we really lean on each other. I think being able to share the experience with someone else who truly understands really does make you feel that you are not alone.  I think others also just offering support and also not expecting too much from me. During this phase I often struggle to attend social events and lack energy."

How does PMDD affect your relationships and/or work?

"Having a partner with PMDD is undoubtedly difficult. My boyfriend is luckily very supportive but it still is hard for him sometimes to really understand my emotional outbursts or low moods. It has at times been difficult to be able to communicate properly when my reactions are because of my PMDD. My boyfriend is very compassionate towards it and is always very receptive to me when I discuss my behaviour after it. We have quite a good rhythm now where I can explain when I am struggling and he knows to give me some space and also help me rationalise my thoughts. I try not to let it have a huge impact on my job but it takes a lot to do that this often means when I get home from work I am utterly drained and lacking all energy. It can take me a long time to regain that energy."

What is the most difficult part of dealing with PMDD?

"Feeling very dysregulated for half of each month and constantly battling with a version of myself who I don’t really elated to. It’s exhausting to feel so derailed."

How does PMDD shape your relationship with your menstrual cycle?

"I think it makes it harder because I anticipate or dread when my symptoms are going to start. Even with an awareness and tracking I get nervous for when I am going to start getting symptoms. But conversely also having greater awareness of my cycle also allows me to extend compassion to myself to know that this is where I need to extend more kindness to myself."

If you would like to learn more about PMDD, check out our blog post Understanding PMDD, where we dive into causes, symptoms and how to navigate treatment and support. You can also check out our other PMDD interview series here.

At Lena, we believe nobody should navigate this condition alone. We are sharing resources, support and conversations so that we can all understand each other better and support and nourish the women in our lives.

Written and edited by Dr Rachel Denham, a trained medic and Women's Health Practitioner, who has worked across the charity and humanitarian sector and now specialises in women's health. Rachel is the creator of Bloody Nora, a women's health and wellbeing zine that fuses storytelling, art and science.