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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PMDD and pregnancy

April is PMDD Awareness Month and it’s something I’ve not talked about much since becoming pregnant again. PMDD directly corresponds with your menstrual cycle so in theory you should gain relief during pregnancy. However, and this is not fact, merely my personal experience, since PMDD causes an abnormal reaction to normal hormonal changes, whilst you may receive some relief during pregnancy it’s possible you still have a sensitivity to hormone fluctuations. As has been the case for me. Some symptoms are worse than ever before, particularly migraine and feelings of hopelessness.

The first trimester is often the worst for lots of pregnant women even in the absence of PMDD, the severity in hormonal changes tend to happen early in pregnancy and level out as your body becomes accustomed. It’s also thought women who suffer perinatal/postnatal depression may be at further risk for developing PMDD, and I can concur that the dip in hormones post pregnancy deeply affected me the first time around. With PMDD age has been another factor which effects the severity in symptoms for me personally. The older I get the worse my symptoms become. Often it has been the case for me where hormonal therapy such as contraception will provide short term relief only to later stop working with no rhyme or reason. Antidepressant medication can also help manage symptoms but again, long term they often need changing and finding the right type and dosage is a lot of trial and error.

After menarche, my PMDD was prominent, but back then at the age of just eleven nobody took my severe mood fluctuations seriously. At thirteen after attempting suicide I was prescribed antidepressants. It was only later when I started diarising my depression and severe mood swings that often included rage and toxic outbursts that I made the connection between them and my periods. Growing up, soon after enrolling in infants school and before menstruation, I was diagnosed with the hormone imbalance premature adrenarche. Though there is no scientific connection between PA and PMDD I feel this was all part of the same affliction, sensitivity to hormone changes affect me in a major way.

PMDD shouldn’t impact pregnancy in the sense that it alone won’t impact your ability to conceive. However trying for a baby whilst managing PMDD can be difficult, especially if you’re taking contraceptives to manage your symptoms, and or antidepressants. Fluoxetine or Prozac as it’s also known, is one of the more favourable SSRI’s for PMDD treatment. However it’s not recommended for pregnant women and therefore you may be asked to switch to a safer antidepressant or come off of them all together. This in itself can be a life altering (and in some cases life threatening) change that could impact your mental health during pregnancy too.

If your PMDD is severe and not responsive to treatment you may have considered sterilisation, which of course can put added pressure on you if you want to conceive. You might feel like you’re running out of time or you might feel forced to make the decision not to have children at all in order to manage your condition.

Though classified as a mental illness PMDD has many physical symptoms including joint paint, migraine and profound fatigue, that can often be mistaken or overlap with other illnesses, in my case my fibromyalgia is much worse when PMDD strikes and I know many other sufferers often get diagnosed with secondary conditions as a result of living with PMDD too.

Looking after your mental health must alway be a priority including during pregnancy, but it’s scary when you’re offered conflicting information and promises of symptom relief aren’t helpful either. ‘At least you get a break from PMDD’ is one of the most useless reassurances I’ve ever heard. Surely we know by now that even those of us with the same diagnoses will experience symptoms differently and bodily changes will impact us all in different ways. Pregnancy is one of the most obvious examples of this. Some women barely know they’re pregnant at all and others (like myself) find the process insufferable.

What’s important when considering all factors is finding a healthcare practitioner that is aware of your diagnoses and if they aren’t up to speed on what it means, they need to be willing to learn. When I found out I was pregnant this time, I specifically asked to be cared for by the perinatal mental health team, this has included regular discussions with a mental health consultant that specialises in reproductive health. It’s been invaluable for me to know that I have people on my healthcare team that understand and are knowledgeable in helping me look after myself during pregnancy. My most recent appointment with the consultant included discussions around further specialist referral for PMDD post pregnancy, and also the need for me to be prescribed antidepressants again post natal. Even if I don’t feel I need them I have a prescription ready and a doctor who is helping me monitor the impact.

Pregnancy is hard on our bodies, buts it’s equally as hard on our minds, and when you are prone to mental health problems or live with a mental illness already, specifically ones prone to intensify with hormone fluctuation, the need to receive the right healthcare is critical.

https://iapmd.org/ the international association for premenstrual disorders have a directory that can help you find doctors in your area that specialise in PMDD so do check them out.