PMDD Lightbulb Moments

This month is premenstrual disorder awareness month and I have teamed up with The International Association Of Premenstrual Disorders as a PMD Awareness Champion. Over the course of the month I’ll be sharing my personal experience of living with PMDD, as well as catching up with other PMDD warriors. This year’s theme is Connect The Dots and I talked to several women I’ve connected with via Instagram to find out how they connected the dots, between their hormones and their mental health.

I asked these brave women three questions which were: 

1. When was your ‘light bulb’ moment?
2. How did you connect the dots?
3. Do you feel as though you’ve found a manageable treatment and if so, would you mind sharing what that is?

I’ve included my own answers below too.

Me, Steph:

I can’t tell you exactly when I knew it was PMDD because hormonal changes have affected me my whole life.

If I look back now I can see how the most traumatic experiences in my life were either in relation to my menstrual cycle or my reaction to such experiences was exacerbated by my hormones and their fluctuating.

For me, I was quite aware of the fact that hormones played a big role in my life and on both my physical health and mood, from a young age. In childhood I had a hormone condition called Premature Adrenarche. PA is diagnosed when your adrenal glands over produce sex hormones. Adrenarche can happen in both male and females, but obviously for females and AFAB individuals, puberty means periods. A lot of my dot connecting came down to PMD’s running in my family, thus having knowledge of them from other sufferers. Since menarche my moods have been severe during luteal, so bad that I was diagnosed with clinical depression at 13 years old and prescribed antidepressants. I also attempted suicide. It wasn’t until some almost ten years later, and I got my first iPhone, that I started cycle tracking using an app. Along with my mum’s knowledge of my symptoms and their severity, we pieced it all together and it became apparent that my symptoms were very obviously cyclical.

Over the years I have had many successes followed by, ultimate failures with treatment. Many treatment options have worked for a limited amount of time, until 𝐏𝐌𝐃𝐃 comes back with a vengeance. For example I’ve tried countless antidepressants and birth control and they have all helped for a period, until they don’t anymore. I can also say it’s definitely worsened in severity and duration since having children. Symptoms have also increased, such as allergies. I’m now allergic to the hair dye I’ve been using for a decade and silver. Migraine is relentless and an attack lasts for days. Treatment wise, I have biweekly B12 injections, try to manage my sugar intake, take SSRI’s month round and use progesterone only contraception – The latter has limited success in the treatment of PMDD, but combined with other methods works ok for me at the moment. What I have found really useful is, since the birth of my son 9 months ago, I have been having intense Dialectal Behavioural Therapy. DBT involves learning distress tolerance skills, and how to dial down the intensity of emotions. Skills include using holistic treatments too such as cold therapy. I really feel DBT has been invaluable in treating symptoms of PMDD particularly.

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Lori:

After giving birth I began mapping how I was feeling along side some cbt for PTSD due to a traumatic birth experience and I started to realise every cycle I was physically and emotionally not well

Research, research, research

CBD oils have been amazing, I live with chronic pain which worsens around my cycle and impacts sleep so these help me get into a deeper sleep, SSRI’s all month too. And lastly, the fitbit app tracking my cycle to rationalise why I’m feeling the way I’m feeling (I can pretty much tell exactly when I’m about to ovulate or bleed based on my emotional state)

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Amy:

For me, it was when I stumbled across the PMDD Information page on the Mind website.

After years of various tests and being told by the doctor that I’m ‘fine’ this was huge. I ticked every single box for PMDD symptoms and I just knew that this was what I was going through each month.

I went back to the doctor armed with this new knowledge plus a symptom diary that i’d been keeping for the previous 6 months and they agreed that the diagnosis was PMDD.

Yes. But it’s just sticking to it that’s the problem! My go to treatments are regular B12 injections, keeping on top of my SSRI intake, Ice hats, pain medication, plus loads of water and trying to cut down on sugar and fatty foods (even though this can seem like the most impossible task in the universe, during hell week!)

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Jaimie:

My lightbulb moment came when the doctors kept telling me I was ‘just’ depressed and giving me SSRI’s and the pill and wouldn’t listen that I only felt this way some of the time rather than fully. Hormonal contraceptives do not agree with me and I knew there was more to it than that but trusted them that they know what they’re doing.

It took a long time but I noticed that I felt immediately relieved and lighter as soon as my period started so good old google came to the rescue and I started reading about PMDD

I felt like for the first time what I had been going through was valid and real when no one seemed to believe me or understand.

I just don’t know how bad each cycle is going to be, however I did find an SSRI useful for a while, they’re not for everyone and I no longer take them. I’ve found that taking things easier/slowing down and planning things for the parts of my cycle where I know I’ll be more positive and less likely to cancel helps because I don’t then feel like I’m letting people down or being unreliable which is a big thing for me – getting outside whenever you can works wonders too even if you don’t feel like it or it’s raining being in nature does more good than people realise

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Maisie:

My light bulb moment was when I was with my ex partner and he called me a psychopath. I was so upset and angry that I punched a hole in the wall. I scared myself with how angry I got. I was so angry that he called me that, but it made me think about what I had done to warrant that, and I thought “shit, I’m not a psychopath, but I’m not myself either, somewhere in between maybe”. It was going round and round in my head, and for a few days every month leading up to my period, I was so deeply upset, I didn’t want to be here, and it was like a cycle that I couldn’t get out of. Why am I like this? This isn’t me. But in the moment, I couldn’t see it.

It wasn’t until I was out the other side of those few days that I could reflect on my behaviour and feelings and realise properly that it ISNT me! I spoke to my GP, who put it down to “bad periods”.

I told them this wasn’t just bad periods, bad periods don’t make you suicidal, aggressive, or run away. Bad periods are tummy cramps and a heavy flow.

I pushed for more help, tests, anything. I was advised to have therapy for my dark thoughts, and they prescribed me SSRI’s. After I gave birth, they changed me to ca different SRRI. But the main help for me is telling my close people “it’s coming” or “it’s happening”. I find myself apologising in advance. “I’m not going to be myself for the next few days and I’m sorry”. Which makes me even more frustrated. No one that I have met so far, has ever heard of PMDD. Except a few queens on Insta! I try to explain it to people by saying “it’s like the volume is turned up full blast on everything. My emotions, the hurt, the anger.” You could say something to me on a normal day and I’d brush it off. But say the same thing to me on those few days and my world comes crashing down. The best treatment I’ve found more than telling people, or medication, or therapy, is reminding myself that it’s all in my head. Sometimes that can be hard, and it doesn’t take the thoughts or sadness or anger away, but it makes them more bearable, knowing that I am ill, not crazy. My ex partner didn’t help, but now he’s gone it’s so much clearer to see. I’m poorly. I have been diagnosed with PMDD, it’s not just in my head but at the same time that’s all it is. Finding others who are going through the same thing and trying to raise awareness for PMDD to others as well as medical professionals helps too. I felt like I was going mad, because I was told I was, and felt like I was. But it was all in my head and that’s where it stays. Like you say (sic) Cunty Carol just comes to visit a few days a week, and where I used to be terrified of her unpredictability, now I can at least say “fuck off Carol, I know why you’re here and I’m okay with it, close the door on your way out”

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Confessions of a chronically ill mum #10

Can’t believe it’s been ten weeks since I started these musings. It’s amazing for me to look back and see the peaks and troughs, highs and lows. I’m very aware that I started writing #ConfessionsOfAChronicallyIllMum quite soon into starting intense Dialectal Behavioural Therapy

For me, I can really see how therapy has helped me come to terms with a lot, and also manage life with chronic pain, physical illness, flare ups of all conditions, as well as PMDD. I would be lying if I said that my hormones are no longer upturning my life every few weeks, because the shift into luteal is still very prominent, despite being on birth control that claims to reduce the frequency/stop ovulation, I am definitely still ovulating. The good news though, is that knowledge and coping skills really are power when dealing with any kind of life trauma, even if that trauma occurs repeatedly.

But and it’s a big but…. No matter how many tools are in your arsenal for the bad days, no matter if you have lots of support or none, there will be days that completely derail you. I know, because I’ve had several myself this week. A visit to the hospital to talk through the treatment options and risk factors for my cardio vascular health, the penultimate therapy session for said DBT group, meaning discharge from the perinatal service is imminent, and being a few days post ovulation, these factors sent me into a spiral. I was wracked with anxiety, up all night, ruminating, latching onto intrusive thoughts, and getting angry and paranoid. I know one hundred percent that I am due on. I know this is premenstrual, and on its own it’s bad enough. Having these additional life factors occur during the luteal phase has highlighted to me, that my coping skills are not absolute.

Kaiser is still teething, he’s been teething since the day he was born, I swear! And he still never sleeps at night. I thought Ciara was a needy baby, and she was, in lots of ways, but this kid is next level. He’s also (dunno if I’m allowed to say this) a typical boy! He’s into absolutely everything. Spending all day oscillating around the furniture, then throws himself off of it 4 or 5 times for good measure. You cannot take your eyes off him for a second and it’s hard. I’m exhausted. I’m also always keyed up and on edge trying to keep him safe.

Despite knowing these things are par for the course of being a woman with a Premenstrual disorder and many chronic health problems, and despite knowing this with Kaiser is all part of #mumlife it’s still not remotely easy! Because for me, it’s not just #mumlife it’s #Sickmumlife. Every hour of every day is spent chasing this kid around and I don’t have the energy for it. I also suffer dearly for the privilege of being parent to two beautiful kids. I have to pay for my time with them, in energy depletion and excruciating pain. I am robbed of time with them because of PMDD and the crippling anxiety it brings with it. I lose weekends with them to migraine and fatigue, and I struggle to provide for them because I can’t turn up often enough to do my job! Also… getting any government help for people who need it is like pulling fucking teeth.

Don’t get me wrong, I’m not saying for a second that I have it worse than most, I know that’s not true. I’d also never say that I am unlucky, because that’s also not true. I just want to sometimes be able to say it’s hard and for someone not to try and offer me green tea suppositories, or a commentary on why their life is harder.

I’d like for people to stop dropping in those two little words at least. Eg: At least one of them’s at school. At least you’re not really disabled. I am! For fuck’s sake, I am!!

Having to prove or feeling like I have to prove the status of my health & illnesses is draining. When at the hospital Thursday, as I hobbled in to the consulting room the nurse asked me what I’d done to myself?! I was so fed up by her question that I literally just said ‘I’m disabled’ because it wasn’t enough that I was wearing a sunflower lanyard stating that I have hidden disabilities, whilst walking like John Wayne after four days of bareback. She still felt it appropriate to ask the question. It made me uncomfortable and I didn’t feel up to offering an explanation. This proved to me that we’re still a long, long way off from wholly accepting that if you don’t look a type of way, you must not feel as you profess to either.

Confession this week is this: Despite doing a lot of work on myself and learning to let go of lots that isn’t within the realms of my control, I still sometimes feel bitter. Radical acceptance has helped me a lot, but there are days, like those mentioned above that I’m still so angry at how my health seeps into every single aspect of my life. I confess that I am terrified about returning to work because I don’t know if I am going to be reliable enough to hold down a job, even a part time one. I confess that even though I’m getting better at understanding my limitations I am still sometimes furious about them. 

Ciara had a birthday party yesterday and it took every ounce of energy I possessed to turn up. To greet the other children and their parents and act like I wanted to be there. She had the best day, and I felt a lot of guilt around how I felt towards the party. But, it worked out in the end and we made it! Sometimes it’s having no choice that actually pulls you from the darkness. Sometimes, choice or not, that isn’t attainable. I’m glad I made it happen yesterday.

29 Weeks of growing you

Every time I change position now I am reminded that I cannot move. Every time I am left alone with your sister I am frightened, because I don’t feel like I can care for her properly anymore. It’s scary, it’s upsetting and I wonder how I will ever care for you. The loss of power in my limbs makes me feel vulnerable. Insecure. I feel like if there was an accident or a fire how would I escape?

When we found out I might need a cesarian I cried more tears. I got frustrated with your dad and anyone else who shrugs off this very real concern of mine with a ‘everyone has them’ attitude. I am not everyone. A cesarian is just one thing on a list as long as my arm to worry about. When I was pregnant with your sister I begged for a section, I didn’t think my pelvis would withstand a vaginal birth, but it did, and I recovered, after a horrendous infection that was so gross the hospital room I was in, stank of blood. Still this goes no way to reassuring me this time, because I am so much sicker now. So much weaker. So little fight is left in my swollen body.

Then I remember that all of my concerns are irrelevant in comparison to keeping you safe and I know I will do whatever it takes. I know I will suffer the trauma on my body like I have for the past 29 weeks and I know I’ll do it, not without complaint, but with conviction.

I have been vague in my conversations with people because I am irritated at their optimism when I feel stuck in one place, with tunnel vision. Their kindness is both needed and hard to process at the same time. Nobody can say the right thing. I am snappy. I am blinkered and blinded by my own problems. I’m being unreasonable, I’m not making sense, I’m emotional. It’s not intentional, but I can’t control it. I feel angry. Angry that this is happening to me and my plans for an amazing second pregnancy that I would cherish have been snatched from me. I am also eternally grateful. Grateful that despite all of this you are still with me. Still showing up, still kicking and your heart still beating. Still waving for scan pics and defying the odds.

I don’t know what I will do if this all works out ok. I feel like I’m in survival mode and if I do survive, and I hope I will. Maybe then I’ll breathe a sigh of relief. Maybe then I’ll tell people thank you, I’ll share their optimism and have more faith. So many months of uncertainty have left me in fight mode. But fight mode isn’t a health place to be.

I’ve been avoiding people, then desperately seeking comfort in company. The weekend we had friends over and it was so lush even though I absolutely hated the idea of people seeing me as I am now, unable to move, fat (I know I’m pregnant but I’m still fat) your sister played all afternoon, laughed and reminded me, that I have to be strong. For her, as well as you. I have to fake it till I make it, somedays are easier than others but everyday I have to show up.

This morning another friend came and brought lots of baby clothes for you, we’ve ordered some new furniture and your grandad has promised to do some work for us before you arrive. We’re going to start nesting soon, so far your dad has done all of the housework (still a shit hole) but he is so busy and I feel so useless and lazy. I feel so stripped of my personality somedays that I don’t even know who I am, other than a sick person who also happens to be pregnant.

Now I’m at the end of this blog, I feel lighter, I feel as though I’ve offloaded and maybe tomorrow will start with the similar optimism of today, and maybe it’ll be better, maybe I’ll laugh a bit more.

Your sister is holding me up at the moment, she doesn’t know it, but her excitement and joy at your pending arrival is a tonic. Her asks for cuddles and little whispers into my bump are sacred. She loves you already, we all do. So let’s do this, don’t quit on us now – we’ve got this.

To the husband who’s wife has PMDD

To the husband whose wife has PMDD.

I know it’s not your fault. I know you didn’t mean to bring home the wrong milk. I know you didn’t climb inside my fallopian tubes and set my ovaries on fire.

I know you’ve had a long day at work and the last thing you want to do is come home to me, your wife, in tears again.

This time because I’ve ran out of chocolate or because the TV show I wanted to watch didn’t record.

It’s true I’ve cried over the wrong sandwich filling before.

I’m making it sound funnier than it is.

It isn’t funny. Not at all.

There’s nothing funny about my hormones making me want to kill myself at least once every month.

There’s nothing funny about me threatening to leave you every time I’m ovulating because I can’t cope with the depression the change in hormones bring. There’s nothing funny about the pain I feel when my uterus is about to start shedding and the agony that follows it’s onslaught.

It’s not easy for you, to live with this unpredictability. It’s not easy for me either, I don’t recognise myself some weeks. I can’t sleep yet sleep is all I want to do.

I know it must be completely mind boggling for you, when one minute I am Psycho Sasha (the name I’ve given to the me that PMDD releases) and one minute I am just me, your wife, again.

One minute I want to rip your clothes off, or cuddle up close and the next, I quite literally want to punch your face in. Your touch makes me recoil.

I know it’s not your fault when I beg you to turn the Rugby down on the tv because the noise is giving me sensory overload.

I know it’s not your fault that the bubble bath you ran me has to be emptied because the bubbles you added are causing my skin to come out in hives.

You didn’t know, because it didn’t do that last month.

I know it must be hard to keep up, I know it must feel like you can’t do anything right. But please know this, you are doing something right. You are sticking with me. You are amazing to put up with me.

You are a hero for supporting me.

If it’s possible to ask anymore of you, I ask you this… please read about my conditions, please familiarise yourself to better understand the signs. Please educate yourself. That is how you can help me, and in turn I will try everything available to me to help me control it.

It’s not easy, and because of my other conditions some medications are counter productive.

Because of how I feel mentally, counselling can be triggering, but together we can ride this storm better.

Thank you.