This blog is a space for disabled mums to come when they need a reminder they’re not alone, for those with mental health issues to read and know that another person gets it.
The sensory disruption caused a visceral reaction in me and the tears fell. I tried to hide them from my daughter, my eldest, the one who sees all – but I knew she’d noticed.
TW⚠️ PMDD.
Cycle: day 17📆
Chemical Menopause: day 23💉
Mood: Hopeless. Ashamed. Overwhelmed.🥺🔄😭
I knew I was ‘on the turn’ I woke up from a nap last evening anxious and with a montage of intrusive thoughts running through my head.
I tried to shrug it off. I was exhausted from being awake the night before with stabbing pains in my right ovary. I did an ovulation test, mostly just to prove to myself, I know my body as well as I think I do. I am still ovulating. Logic told me, if I knew it was coming perhaps I could get on top of it?
No. This morning (18.03.23) might have gone differently if I’d had Shaun home, but he had to work and I was alone with both kids.
I told myself we needed to get outside. I called my mum to see if she wanted to come. She was busy but I told her not to worry about me. I was going to be fine.
I wasn’t fine.
I got both kids dressed ready to go out. On our way out of the door I realised I didn’t have my car keys, only to then notice the car wasn’t in the driveway. I’d forgotten that Shaun had it because his is in the garage.
No bother, we’d walk to the park. I got the kid’s coats and shoes on, put K in the buggy then opened the front door to a thundery downpour.
Tears pricked my eyes and I could tell C was upset we weren’t going to the park after all. I got K back out of the buggy, he started screaming. The sensory disruption caused a visceral reaction in me and the tears fell. I tried to hide them from my daughter, my eldest, the one who sees all – but I knew she’d noticed. I wanted to explain why I was crying, but doing so just made me cry more.
I don’t want to be this person, desperate to hold it together, but I am her. I’ve spent a lifetime acting impulsively. Acting on my emotions is normal for me. Just because I’m aware of it now, doesn’t make emotional regulation easier.
I needed help. I called Shaun to come home, but in doing that I felt an overwhelming sense of shame. Why can’t I cope? I was fine yesterday. Why am I such a useless mother? They deserve better than this. Why can’t I stop feeling like a crazy person? I should be able to control this by now.
Thus the shame cycle continues.
“Being told we can do anything we put our minds to, when in fact we feel utterly incapable when in crisis, perpetuates stigma”
I know it’s going to take time, not just to shut down my ovaries, but to learn new ways to channel the feelings I’m so used to acting on. Self awareness is crucial, but it isn’t a cure all solution. It doesn’t automatically give you a surefire way to break decades of habitual behaviours.
Asking for help, admitting that you don’t feel capable or able to function, parent, be rational, isn’t easy. In fact it can be an excruciatingly painful process and one of the reasons many people don’t reach out. Saying ‘I can’t’ is something we’ve been told for generations is just an excuse.
I remember as a kid hearing words like: ‘There’s no such thing as can’t’
‘You could if you wanted to’
Being told we can do anything we put our minds to, when in fact we feel utterly incapable when in crisis, perpetuates stigma. We’ve heard about toxic positivity right? I won’t dwell here, but I’m sure you get where I’m coming from when I say, I want to and I’m trying but somedays I really can’t…. Giving myself permission to admit this and trying to free myself from a cycle of shame is not instantaneous.
My solution, I’m realising, is an evolving journey of small changes, with setbacks, determination, and a whole lot of hope.
I believe in hope, because I know without it I probably wouldn’t be here.
I’m going to be presumptuous and assume that the majority of you that follow me know, I have PMDD.
Premenstrual Dysphoric Disorderis a severe negative reaction in the brain to the natural rise and fall of estrogen and progesterone. It’s suspected this reaction arises from a cellular disorder in the brain. Symptoms can worsen over time and or around reproductive events such as menarche (the first menstrual cycle), pregnancy, birth, miscarriage, and perimenopause. Three weeks ago I chose to turn off my ovaries. A subcutaneous implant of GNRH Analogue was placed under the skin of my abdomen to shut down ovarian function. This process is called Chemical Menopause or medically induced menopause. It should (if it works) put my body into a reversible menopausal state. If this works well and symptoms subside I’ll hopefully be added to the waiting list to have my ovaries removed. This isn’t a first line treatment, nor is it an easy one to endure but for the sake of my health specifically my mental health I felt I had no choice but to utilise this option.
So why the fundraising and what’s this about Teal Tuesdays?
April is PMD awareness month. A whole month dedicated to raising awareness for those of us living with a premenstrual disorder. And this year IAPMD the charity that facilitate awareness month are making Teal Tuesdays their big fundraiser.
How do I get involved? That’s the easy part. Below is a simple step by step guide to taking part.
Why do you need donations? Donations help IAPMD continue to provide vital spaces and educational resources for patients, healthcare providers, and researchers. A donation of just US $25 can fund a 1:1 peer support session for those in need. Funds raised also help IAPMD to further research Premenstrual Disorders and support their mission to create a world where those with a PMD can not only survive – but thrive!
Can I host an event or do my own sponsored thing? Yes absolutely. IAPMD have curated a list of ideas to make it easy and fun to participate.
Image used with permission
Why Teal? The official ribbon colours for PMDD are teal into black and like many charities have a colour that represents them, IAPMD wanted theirs to be a signature colour for those who fundraise for them. Plus, it’s a great colour and IAPMD can’t wait to see what you do with it!
Can I buy something to wear? Yes! Bristol based designer and fellow PMDD patient, my mate, Amy Steel of One Tuff Muvva has donated some super fun designs that you can purchase on T-shirts and a variety of other items. Find them here.
Note from me: PMDD is a debilitating chronic illness that is widely misrepresented and dismissed. It takes a person on average 12 years to get an accurate diagnosis and many women are misdiagnosed with Bipolar Disorder. This charity has not only helped me understand my condition better with their comprehensive resources, their groups have answered many of my questions. Though international IAPMD have a small team and each one of them work tirelessly to make Premenstrual Disorders visible. Their mission is to create a world where those with a PMD can not only survive; but thrive. If you are someone who was assigned female at birth, a woman, wife, mother, daughter, sister – I urge you consider making IAPMD a cause you get behind. PMDD & PME can and does ruin the lives of those living with it. Without information and awareness sufferers will continue to be misdiagnosed and incorrectly treated. It can occur at any age and worsen over time. IAPMD is the only charity of its kind providing international support to PMD sufferers worldwide.
I wanted to write this post – no scrap that actually, I NEEDED to write it. Not for sympathy. Not for ‘attention’ well for attention to the topic maybe, but for my truth. The need to share my truth of this awful rollercoaster I’m on with my health.
To the outside world my life has never looked less complicated. I’m married to the best man I’ve ever known. I have two beautiful kids. I’m writing and advocating – two of the things that set my soul on fire.
So what have I got to be so hysterical about? This week is the 4th week I’ve not been able to stay up for longer than 3 hours a day. My body is not working as it should. My mum, husband and two of my best friends have all looked after my kids during half term: a week when I should be making memories with them. 3 weeks ago I caught a common cold that left me in bed for 5 days at my mum’s house. Off the back off that came a Fibro flare, my joints seized and neuropathy took over my extremities. This week I had some blood tests which show my inflammatory markers are high again.
The pain I’ve been trying to hide has left me angry and ashamed. I’m angry because I’m tired of having to explain that I’m sick, even though I don’t ‘look’ it. The physical and mental toll of being unwell is too much.
I’m angry at the world for not understanding my needs.
I’m angry that the sound of two people talking at once now cause visceral reactions in me, that make me want to run into oncoming traffic.
I’m angry because I’m ashamed that once a month during PMDD I am hysterical and I’m ashamed that I can’t look after my own children without help.
I’m ashamed at the way I respond to stress and stimuli.
I’m ashamed at myself for not being more grateful on the hard days.
I’m ashamed that I can’t cope with life in an admirable and inspiring way; because society deems that’s the way disabled people should cope.
That I’m not thriving despite anything – I’m surviving at best.
“I’m scared to be around them, in case I fuck them up with my very existence”
Yesterday I walked the dog in the rain and thought about throwing myself in the river. I don’t want to do that, but it’s a thought that niggles for 10-15 days a month, sometimes grows arms & legs & tells me my life, my wonderful life, with my beautiful family isn’t worth sticking around for.
I could and would never intentionally leave my kids, but this knowledge terrifies me too, because sometimes I’m overwhelmed by it. I’m scared to be around them, in case I unintentionally fuck them up with my very existence.
That word again: SHAME in my opinion parents are shamed for their struggles. Especially mothers.
She’s not doing enough her kids are acting out.
She’s doing too much her kids are neglected.
She needs help – those poor kids.
And on it goes, the shame cycle.
For example: usually, after a post like this I get an influx of messages from kind strangers, telling me they’re sending love, and solitary one or two messages from people I know in person. My real life friends. It’s a tough one because whilst we absolutely should not rely on external validation as a coping mechanism, it can still be difficult to tell your brain that. With social media now being our go to resource for almost everything, you think your friends and family have seen it, you think they’re rolling their eyes. And because of those insecurities, it’s hard to dismiss the notion that these feelings, intrusive thoughts and so on, are feelings we indeed should be ashamed of.
I wish she’d keep it to herself because it makes me uncomfortable!
I dunno why she writes all that stuff there’s no need it’s so cringe.
She doesn’t know how lucky she is.
If she were really feeling that bad she wouldn’t be posting about it.
And it got me thinking, is this what we want our children growing up to believe? That when they feel bad about their life they must keep quiet? That if it’s so bad they’re even possibly thinking of ending it, nobody wants to hear about it. They should only tell a doctor or someone close to them because other people, the rest of the world, might feel uncomfortable if the whole truth is shared with them? Should we be teaching our kids that their feelings don’t matter because they’re cringe to read about, silly to other people who might not understand them? Attention seeking.
It’s not about attention, but even if it is – so what? Don’t people who might be feeling suicidal, or so unwell they’re struggling to keep themselves safe, deserve attention?
Aren’t we all – just trying our best to survive, with some of us finding it easier or harder than others at different times. It’s not about comparison, who has it worse, or wanting a pat on the back for speaking out…. It’s about acceptance on a grand scale. It’s about making small changes that will lead to larger societal shifts in how we relate to each other.
For me personally, the problem isn’t with recognising feelings of shame. I’m aware of them I’m aware of behaviours that stem from them. No, for me it’s about self compassion, that’s the one thing I can’t seem to grasp and it’s a major road block in helping me execute strategies to deal with shame and all of its associated emotions.
I made some decisions this week that I hope will help me tackle this moving forward.
Can’t believe it’s been 9 weeks since I last wrote an update on my HRT journey. A journey is exactly one of the words I’d use to describe it. There’s so much in the media at the moment about the use of hormone replacement therapy, and often strong opinions both for and against. I’d say for me, I’m still pretty on the fence.
So what are the three words I’d use to describe this most recent cycle? Improved, unusual, andyou guessed it (a) journey.
Improved. Because, for the first time since commencing treatment I felt a really significant improvement in psychiatric PMDD symptoms last month. The level of anxiety was what I consider bearable (no anxiety is nice, but when you’ve felt close to the edge every month for decades, bearable is considered good!)
Unusual. This one is a weird one. I can’t work out why my symptoms were reduced. I’ve been using ovulation strips when I think I’m ovulating to confirm that I’m still cycling, and unfortunately- I am. So it’s not as if there was some kind of ovarian wipe out that can be thanked for the minimal mental turmoil. But we celebrate small wins here. And it’s nice to report feeling less tormented, for once.
The Journey is ongoing. In fact, I’m certain it always will be. Whether that be post op – or continuing with my reproductive system ‘in tact.’ I know this, because trauma and our experiences of it never really leave, so even in the absence of horrific PMDD my mind is still naturally searching for worse case scenarios. It can pluck them so easily from seemingly thin air!
Observations
I feel I need less oestrogen around ovulation and more straight after it. A steady dose of high supplementation is not always the missing jigsaw piece. I am not medical in any way, but I know my body, probably better than I know anything. If I have too much on the lead up to ovulation, I become anxious in follicular. This is less than ideal because this should be my ‘good’ week. So I am going to talk to my gynaecologist about tweaking dose and admission around this time, and see if it results in a positive change.
I’ve started planning my life around PMDD again. I used to do this around my period specifically, but now I focus solely on my moods and when they’re likely to turn. It’s not ideal, but it is necessary to get the best out of my days.
I’m about to ovulate again any day now and my usual body aches, shingles pain and mouth ulcers are creeping back in, as they do every month around this time. So it’ll be after next week that I’ll tell if I had a one off better cycle last month, or if HRT can indeed finally be thanked for the decrease in negative mood fluctuations. It’s a rollercoaster that’s for sure, but anything, any scrap of positivity is better than PMDD itself. So like with most minor improvements in my life, I cling to them with fervour and hope for the best.
Because in the end, despite science and medical intervention, hope is what keeps me going. ❤️
Hello and apologies. Once again I’m a little late with the update. The truth is, the last four weeks have been all over the place, and at times not at all kind to me physically, hormonally, emotionally or professionally.
If I had to describe this most recent cycle of HRT in three words it would be: Exhausting, variable, and unstable.
Exhausting because despite being in the third month of this trial, my sleep is not really anymore settled and fatigue has been really crippling me. I’m so tired during the day and we’re not talking just a few yawns here or there, it’s a real physical inability to keep my eyes open. I’m still struggling to remember what I walked into a room for and small things that may have seemed insignificant in isolation are problematic with reoccurrence: things like sending Ciara to school in her PE kit on the wrong day and similar. Combining this with parenting a one year old stunt man and six year old diva, is not cool. It’s also quite dangerous. Unsurprisingly of course there are sans day time naps, thus perpetuating the cycle of exhaustion.
Variable is the big one. I’ve felt physically unwell for weeks but have managed to keep a level of emotional equilibrium. I’ve lost my hair, I’ve lost hope and I’ve felt really unsettled. I’ve also had days where I’ve felt extremely hopeful, excited, energetic and healthy. So far there’s really no real tell to suggest HRT is working miracles or not, because the symptoms are still so variable and as mentioned I’ve actually felt quite a lot worse physically for the last few weeks. What’s unclear though, is whether this is related to the HRT at all, is it Fibro, is it from starting new statin medication? Or is it indeed the usual hormonal hell experienced during a cycle in which I am still ovulating?
Unstable. I mention this because the simple fact that this process is soooooo variable makes me feel a little unstable. I have hope, I really do, that this will improve.
The thing about hope is though, you always have to be holding onto it. If you drop it, it’s gone, ‘poof’ and all of the trial and error of the last three months is worthless.
divamum
Upsides:
I don’t want to be the person that puts you off giving this stage in the PMDD treatment pathway a go. I wouldn’t still be slogging it out if there wasn’t some evidence based merit to using combination HRT to treat PMDD. So I’ll let you into the upsides, the positives I’ve experienced since I’ve been on this latest hormonal rollercoaster.
Fewer migraine attacks. This is a huge one for me because for the last 2 years I’ve suffered migraine every week with attacks lasting a minimum of 36 hours and always rendering me completely disabled. Since commencing HRT I’m only experiencing attacks in the week prior to my usual period. (Usual because I’m constantly bleeding but migraine is only present when I would normally be premenstrual.) There’s a lot of controversy over the safety of using supplemental oestrogen with migraine. However it is suggested that transdermal oestrogen is the preferred way to supplement if you have migraine. Migraine is the most debilitating, painful and abhorrent condition that I live with, it’s also problematic for my mental health, so any reduction in severity, really is huge for me.
Less intrusive thoughts. I am still experiencing anxiety and it is still a symptom that can be severe and have a profound impact on my overall mental wellness. With that said though, HRT has seemed to help take the edge off of the extreme and terrifying thoughts I was experiencing prior to starting treatment. I guess in a nutshell I’m more rational. This could also be down to the year of therapy I’ve just completed, but if I’m being honest I did not feel this level headed upon completion and believe the oestrogen has (completely contradicting myself here) stabilised some of these symptoms.
Conclusion:
More time. I spoke to the amazing gynaecologist I saw back in August this week, I’ve emailed him several times and he has always replied the same day with advice. As I am still very early into this treatment method he believes to really understand if I am not gaining any benefit, we need more time. When he said this I was really fed up. Then I took stock and really considered it. I thought about what chemical menopause might look like for my family right now and discussed with my husband the idea that we go ahead now, or wait until after Christmas. I know I’m going to need chemical menopause and ultimately surgery in the next year. I know this is a given if I want to keep myself and my family safe and reclaim my life. Because I know, categorically, that I can’t do another year of living with PMDD. The question I have to ask myself is could I do another few months of living with this slightly shorter, slightly improved, less disabling, watered down version? And the answer was, probably.
So that’s the conclusion for now. I also discussed with the gynae my fear of feeling worse when initiating GnRH injections. He proposed the idea of trialling a nasal spray in the first instance instead. I felt even via transient email communication that he had heard my fears. Ultimately, I feel as though I still have some options.
To assist with the reoccurring bleeding, hot flushes, sweating, and the intense fatigue, we are going to introduce a third pump of Oestrogel. I’ll start taking this at night and continue with my two pumps in the morning whenever I feel ready. Again – not going to pretend I’m not concerned this could make me feel worse initially, but even having the option and wiggle room to tweak the dose, is a blessing in itself.
Once again I’m ending this rather complex post with hope in my heart. I’d like to thank everyone who has answered questions for me too, it helps, and especially my fellow #PMDDpeeps over at IAPMD I am lucky to have such knowledgeable women in my corner.
Having suffered with this illness for more than 20 years I feel I am equipped to answer questions relating to the condition and as a result of my own experience. However, it’s important to note I am not a medical professional and all answers are my own words, with no association to any organisations that are linked in this article. Relevant links are included so that you are able to corroborate mentioned treatment options and use diagnostic tools.
How did you obtain diagnosis?
This question came up several times, with many of you saying you had tried and failed to have PMDD accurately represented when speaking to GP’s and medical staff. In my experience from discussing PMDD within the online community I have come across similar tales and it’s one that follows a similar trajectory to that of my own experience. I first suffered from mental illness at aged 13, suicidal ideation, attempts and thoughts occurred, followed by bouts of extreme rage, panic attacks and enduring anxiety. It wasn’t until some years later I had made the connection between my feelings and my menstrual cycle. I remember seeing a GP aged around 19 when I said I believed I was suffering from a hormonal imbalance. I didn’t know at this stage that PMDD is a reaction to normal hormone fluctuations, an imbalance was my assumed interpretation. She told me all women suffered ‘some PMS symptoms’ and that there was no diagnostic blood tests that would give insight into my mental health and it’s correlation with my cycle. Since then I have seen the GP and several gynaecologists in excess of 100 times for the same problem. When I finally began to be taken seriously around age 23, my GP still referred to my condition as severe PMS. Last year aged 33, I became so unwell during pregnancy and after the birth of my son that I was hospitalised and it was only then, under psychiatric care that a psychiatrist referred to my illness as Premenstrual Dysphoric Disorder. More recently this year when seeking further intervention privately, the Gynaecologist (whom is also head of his department in an NHS hospital) again confirmed a PMDD diagnosis.
Diagnosis is a huge relief, it allows us to stop gaslighting ourselves into believing we are raging hypochondriacs. BUT clinical diagnosis is not necessary for treatment of the condition. Your GP can advise, and treat PMDD symptoms even whilst still referring to it as PMS. If these early treatments such as lifestyle changes, hormonal birth control and SSRI’s work for you, you may never need a formal PMDD diagnosis. That’s not to say you won’t want one for your own clarity. If this is important to you, I suggest keeping on at your GP for specialist referral. If you are struggling to get a diagnosis and believe you have PMDD please head over to IAPMD for help and information on diagnostic criteria and talking to your doctor. They have an array of tools to help you cycle track and a glossary of terms that will help you explain exactly how your condition affects you see: Iapmd toolkit.
You also have fibromyalgia, do symptoms of both conditions overlap?
In short, yes. In detail, a higher percentage of fibromyalgia sufferers are women. A symptom of the condition in women can include painful and heavy periods dysmenorrhea. It’s also known that many persons living with fibromyalgia will suffer mental health problems, so it’s my opinion and personal experience that it’s fair to say symptoms overlap. PMDD can trigger a flare up in fibromyalgia pain, more prominent and prolonged fatigue, as well as sensory overload, brain fog and migraine attacks. The key difference between the two is that PMDD only occurs during the luteal phase of the menstrual cycle, which occurs between ovulation and menstruation. Instead, fibromyalgia symptoms can and do occur at any time during the menstrual cycle. I am often alerted to the arrival of PMDD by waves of crippling anxiety and intrusive thoughts that disappear when my period arrives. However some physical symptoms that might be triggered by PMDD end up lasting long after it’s end and will alert me to a Fibro flare up. Also with my experience of fibromyalgia, pain doesn’t ever disappear entirely. I always have some form of baseline pain. Many people also report joint pain with PMDD along with migraine attacks, these are present premenstrually as a result of PMDD and can occur and worsen at any time with fibromyalgia.
Can PMDD come on at any time in life?
Yes, it absolutely can. Some people find their PMDD starts or worsens with a reproductive event, such as menarche (which is when mine started) after pregnancy/birth or miscarriage (when mine worsened) or with the onset of perimenopause. For some it will seemingly come from nowhere. It is believed that PMDD can also be linked to genetics, childhood trauma and depression.
Is PMDD a disability?
Here in the UK, you are covered under the Equalities Act and therefore thought to have a disability if you have an impairment that is either, physical or mental and the impairment has a substantial, adverse and long term effect on your normal daily activities. Depending on the severity of your symptoms you could be covered under the act with a PMDD diagnosis. When explaining PMDD to my employer I advised how it affects me, for example: I suffer menstrual migraine attacks that leave me bed bound for days, along side extreme fatigue and joint pain. As well as this I also suffering debilitating anxiety, intrusive and suicidal thoughts and panic attacks, which make carrying out daily activities impossible. Cognitive impairment such as brain fog and an exacerbation of any underlying symptoms are also worsened with the onset of PMDD. The fact these symptoms occur every month, and last for 2 weeks makes this a long term condition with substantial impact on my life and ability to function.
Why do doctors prescribe SSRI’s for PMDD if it’s hormonal?
After diet and lifestyle changes SSRI’s are a treatment option to help manage the mood and anxiety symptoms that are present with PMDD. Whilst you may feel you aren’t depressed, some women (myself included) have found benefit in taking SSRI’s, both month round and only or double dosing during the luteal phase of your menstrual cycle.
Are palpitations a symptom of PMDD?
PMDD has many, varying symptoms. They range from severe mood alterations, to debilitating physical symptoms. I personally do experience palpitations during both ovulation and the luteal phase. I’m also extra sensitive to stimulants such as alcohol, sugar and caffeine during this time. All of which make palpitations worse and more noticeable. If palpitations are persistent it’s always best to get them checked out to rule out other possible causes, though I know many people experience them alongside profound anxiety, so if this is one of your PMDD symptoms it could also be exacerbating your palpitations.
Summary
PMDD is a chronic and debilitating condition with a range of symptoms that vary in severity.
There are a range of treatments used to treat PMDD and their effectiveness is very individual.
PMDD can and does exacerbate underlying conditions, this is sometimes referred to as PME (premenstrual exacerbation)
PMDD can occur at any time during a person’s menstruating life.
I hope this information is helpful. For more detailed and expert advice head to IAPMD where you’ll find everything you need to learn more about PMDD.
This week if I had to use 3 words to sum up my HRT experience I’d use: BLOODY, ENTHUSIASTIC and BRAVE.
Bloody
I’m still bleeding two weeks after the last time I told you I was bleeding. Which isn’t ideal. It’s not spotting either, it’s a couple of pad changes a day. The main cause for concern here is I can’t really tell what is or was my menstrual period and so I don’t know my cycle as I normally would and therefore struggle to determine how my symptoms relate to which phase. However, for now, I’ll take the blood. I don’t want to put up with it forever, of course that would become troublesome, but so far the blood I’m losing is a minor problem and is being outweighed by positive changes and more calm.
I’m also unsure whether this bleeding is related to the oestrogen gel, or the progesterone in the mirena coil as both report similar effects. It still needs noting though, because it is a troublesome symptom if it continues long term, and I don’t want to have to add an additional progestin treat it.
Enthusiastic
I chose this word because for the most part it’s how I’ve felt in the last two weeks. Potentially this suggests it’s when I’d usually be in the follicular phase, or that HRT is doing the job it was prescribed for. The trouble with me is, I am a pessimist, after decades of cyclical hell I’m almost programmed to think it can’t be working. However if I’m being honest, with both you, and myself, I have felt better, less anxious and more able to cope. It’s summer holidays -I mean if there was ever a time that was going to tip me over the edge this would be it! But I’ve managed to get out with both kids, I’ve caught up with friends (just having the energy and enthusiasm for this, is hugely positive) In the last few days I’ve suffered migraine attacks and felt fatigue and muscle pain (which I think is related more to Fibro than PMDD) and still my mood hasn’t plummeted. Moreover I’ve not been plagued with those awful intrusive thoughts. All of this, for me, is quite something!
Brave
I chose this word because I have done things I’d usually panic doing, like driving places I don’t know, on my own, and trying to get my steps up, increasing my movement. I’ve still had anxiety around doing these things, it doesn’t just disappear, but it’s anxiety in relation to normal life stuff as opposed to being crippling, as is normal during PMDD.
Gynae Appointment
I saw the gynaecologist to discuss my treatment plan and review my use of HRT. He got full marks as soon as I entered, when he thanked me for my email. I was relieved to hear that he had taken the time to read it, it was long! I explained all of my symptoms to him over the past two decades. He asked me how I cope during PMDD and I explained to him that for the most part, I don’t. Some would argue this, but I am forever calling on my mum and husband to come and help with the kids or indeed in a panic that they then have to talk me out of. I told him I’ve been in crisis so many times premenstrually that I almost feel it’s normal. That I swing from feeling like ‘I’m going mad’ to being able to cope. He fully supports a PMDD diagnosis. To be honest just hearing those words as opposed to the ‘severe PMS’ my GP always uses was such a relief that I ended up leaving in tears.
What was even more positive for me was the options he presented me with. Just finally feeling as though I have some was effectual in calming my racing mind! I’ve always known the treatment pathway, I’ve just never been able to get a doctor to consider me for the next stage before now!
We concluded that I will remain on the HRT for another few months unless I do not see any continuity with the improvement, or I experience a relapse. The next phase is chemical menopause which is induced by injection of GNRH analogues. As it’s an open referral to a private hospital, it’s left open so I can call him any time and book the next available appointment for the GNRHA shot. If I go down this route I will leave the mirena in situ and continue to use Oestrogel. I would then trial the medication for 6 months before deciding whether or not to have surgery to remove both of my ovaries and Fallopian tubes (Bilateral Salpingo Oophrectomy)
No major surprises at this appointment I knew what was to come next, I just thought I’d have to fight harder for it. Relieved to say I didn’t. The consultant explained that to obtain the injections for chemical menopause, I would need to have the first one in secondary care (Private treatment centre) and then I could be referred back to primary care to receive the injections on the NHS. This was really reassuring considering my mum paid for my appointment and I have £14 in my current account, so there’s no way I can afford private healthcare in the longterm. That said it was still worth every penny to us as a family, to enable me to have these discussions with a knowledgeable doctor whom is experienced in Premenstrual Disorders. I feel like there’s hope, and options and both of these were in short supply before my appointment.
I plan to write another blog really soon to answer questions relating to PMDD, but please remember IAPMD are the oracle when it comes to premenstrual disorders, so head on over there if you need advice, questions answered, or resources to support you.
If I could sum up the last three weeks in three words they’d be INSOMNIA, ANXIETY, and HOPE.
Insomnia
So let’s start by telling you about the insomnia. I’m not going to sugar coat it, it’s been horrific. It began almost as soon as I started using Oestrogel and unfortunately it remains. If you’re reading this, you’re probably a HRT user yourself, menopausal, someone who thinks they may have PMDD or a PMDD sufferer. Or maybe you’re none of the above and have no previous insight into hormone replacement therapy at all… I know it can be confusing when deciding whether or not to try a new treatment, especially with how the media portray HRT as either a wonder drug (and for many it is) or a carcinogenic. But like with anything we put into our bodies, there are side effects to consider. For me, insomnia has been one of the most problematic. As a mother and someone whom lives with chronic fatigue and on occasion hypersomnia, I have found this particular symptom difficult to navigate. Mainly because, if you’ve ever lived with insomnia you’ll be aware of how it can feed into anxiety. Just how dark the depths of the night can become when sleep is evading you.
Anxiety
Since beginning HRT I’ve had loads more energy – which to some would be deemed a positive side effect. However, for me it’s not been so good, because the energy I seem to now have in surplus, is creating a quagmire of anxiety and ‘nervous tension.’ In short – I can’t relax. I’m feeling often keyed up and on edge.
A few other notable side effects have been:
Hot flashes
Nausea
Breakthrough bleeding – though this could be attributed to the recent mirena coil I now have in situ.
Hope
But I’m still hopeful…. Mainly because what else have we got if there’s no hope? And also because it’s very early days and adding in additional hormones was always likely to cause some symptoms particularly when you’re adding them to treat a hormone sensitivity and not necessarily a depletion as you would in menopause.
I’ve also just finished reading I BLAME THE HORMONES by Caroline Suzi Church and that gave me hope. It’s something I want to review on its own blog post, because the similarities between mine and Caroline’s PMDD trajectory are so similar, it’s more than I can possibly squeeze into a paragraph on this blog, but if you have PMDD you absolutely need to read it! Not only is it scarily accurate, a whole half of it is dedicated to treatment and self help. It really is a wonder of a book with so much insight into reproductive mental illness.
Positive changes
Finally, I need to finish by saying there have been some positive side effects, though fewer, it’s important for me to be transparent. Many people have great results using HRT and as mentioned above I am still really hopeful that I too, will get to experience more of these going forward. One positive change I’ve noticed is a reduction in the severity of my overall joint pain. Which is pretty huge considering I’m in pain almost all of the time. I’m not pain free now by any means, but my joints are beginning to allow more range of movement and I can only attribute this change to coinciding with my use of HRT. Another thing that’s improved is the horrific intrusive thoughts I was having. They are not gone altogether, but when it comes to feeling out of my mind I’ll take every single win (however small) I can get and this is one that suggests HRT could be the right direction for me.
One of the things I get asked occasionally when discussing PMDD and how I manage it, is how I track my menstrual cycle. Now, I know, as a writer, I should probably favour good old fashioned pen and paper, but instead I prefer to use an app. It’s quick and easy, and all the information you need is available at your fingertips. I’ll go into more detail about which app I use and why, shortly, but first a few reasons why you should track your menstrual cycle.
THE WHY IF YOU HAVE A PREMENSTRUAL DISORDER….
There are many reasons why you might wish to start tracking your menstrual cycle, or maybe you haven’t been considering it previously at all. Either way, here’s a few core points as to why you might start. Not all of them are relevant to PMDD, but if you do have PMDD see this as a reminder that in order to gain access to adequate treatment, and or diagnosis, you really needto have tracked your cycle for a minimum of two months (or two previous cycles.)
The reason being, cycles as we know, change, with hormones fluctuating regularly. When living with PMDD specifically I would (personally) recommend cycle tracking to have taken place for a minimum of three to six months. Because, as a consequence of hormone fluctuations, symptoms will too fluctuate and it’s important, for diagnostic purposes, to note the severity in symptoms and whether they occur frequently or ad hoc. It’s also useful for you individually to note how long your PMDD episodes last, their impact on your life, and whether normal every day activities are compromised. PMDD doesn’t only come with psychological symptoms, despite it being a hormone based mood disorder. Many persons with PMDD also experience a range of more prominent physical symptoms than those with PMS. And all of that’s without really delving into the influence they have on our moods and mental health. IAPMD recently published a study showing that an alarming 34% of persons with a menstrual disorder such as PMDD will attempt suicide. If you have been feeling depressed, anxious or dealing with intrusive thoughts, see a health care provider as soon as possible and start cycle tracking. It’s a really useful tool in determining if your symptoms could be related to, or be exacerbated by hormonal changes and your period.
THE WHY IF YOU HAVE A NORMAL CYCLE….
If you’re someone who has never experienced menstrual health issues, you might be wondering why you’d bother to track your menstrual cycle. Surely if your period arrives like clockwork every month with minimal impact on your life, cycle tracking is an unnecessary chore? Well…not necessarily. The purpose of tracking your menstrual cycle is a personal one, but many people still want to get ahead of aunt Flow’s monthly visit, and keeping track is a great way to do it. You may be planning a holiday in advance and having tracked your cycle for the last few months is more likely to give you an accurate prediction of when a future cycle is likely to end and your period start. You may be keen to learn when you’re likely to ovulate. Again, this is more likely to be accurate if you are regularly keeping track of when you bleed. Many people now use cycle tracking as a medicinal birth control alternative, as well as when planning pregnancy. Perhaps your period has always been regular but now isn’t. Could you be pregnant? Is it peri menopause or even menopause itself? You might also be experiencing symptoms that you are completely unaware could be caused or exacerbated by hormonal fluctuations. Did you know common illnesses such as colds and sort throats can also be caused by hormonal changes including being premenstrual? Learn more about ‘period flu’ here. It’s even possible you’ve developed random hives, or your hay-fever is much worse. When you are cycle tracking though, looking back at the calendar you can pinpoint when this is likely to occur in future and potentially prevent the impact. Perhaps your migraine attacks have worsened or increased despite avoiding your usual triggers. Aches and pains have been bothering you, and fatigue is something you’ve been sure is just ‘normal tiredness’ but has become overwhelming recently.
Hormones affect so much of our bodily functioning and have the power to better or worsen how we feel much of the time. Without tracking your cycle it’s simply impossible to know if physical symptoms you could be putting down to everyday problems, are actually linked to hormonal fluctuations, imbalances, sensitivities, and in some cases more serious illnesses such as PMDD, endometriosis or poly-cystic ovarian syndrome and even some cancers.
HOW DO I TRACK MY CYCLE?
There are infinite ways you can cycle track. Of course, as previously mentioned, good old fashioned pen and paper AKA a wall calendar or diary, will suffice. Just be sure to be consistent with diarising your symptoms and how they affect you. Specific menstrual health diaries are available to purchase on Amazon too.
The reasons I personally choose to track using an app are: it’s quicker, you can set reminders to prompt you to log symptoms, and even add medication prompts on some. Ovulation prediction is easier via an app too, it does it for you based on your previous two cycles. The App I use and have always used is simply called Period Tracker and is free via AppStore it has all the above features and also includes a place to diarise what’s going on, or leave yourself notes. Other common favourites seem to be FitBit and using your phone’s built in calendar, adding emojis to describe mood and notes for symptoms. There are so many to choose from though, plenty of options to make finding the one that works best for you easy!Typing in key words such as menstruation or period in your preferred App Store will allow you to see which ones are available on your device. As ever the infinite wealth of resources available via IAPMD is also a fantastic place to start. They have a self screen tool for people who feel their symptoms could be related to PMDD or PME. Diagnostic criteria and advice as well as symptom tracker sheets specifically designed for PMDD. You can access all of their resources via this link
I personally use a cycle tracker to prevent, reflect, prepare and manage my periods and their impact on my life and abilities. It helps me understand why I might be feeling a certain way and is also a useful tool when presenting symptoms to healthcare professionals. Good luck, ‘appy tracking!
Disclaimer: Everything mentioned in this post, including the links and suggestions, are my own personal experiences, opinions and preferences, and are not affiliated in any way with the websites or brands mentioned.
Three months I’ve been writing these, and they are basically just a way for me to brain dump, to offload and overshare. However, when I look back to number one, I can also see personal growth. Those confessions I wrote in the first few chapters of COACIM were so much bigger than the ones I’m bringing to you now, and that’s because things have changed.
So what’s been happening? A lot actually. But before I get into it, I have to admit that having Shaun off over Easter for a week was undeniably helpful. This week, I am feeling done in. My joints hurt, I have brain fog, migraine symptoms and generally feel under par. It’s only two weeks since I last felt like this which is proper shit as it means this menstrual cycle, PMDD and Fibro symptoms are massively overlapping, and ergo exacerbated. The last week of the Easter hols was just me and the kids, and surviving that after a week away and all of us contracting norovirus, along with my normal and new symptoms, was pretty tough going.
You know what though, I’m proud of me. I’ve been relentless with this PMD Awareness month stuff, now having raised over £500. I’ve had so much support, mostly from strangers online as per, and those IRL proper mates that show up for you whatever shit you’re spouting about on the gram. I also participated in two instagram lives, one with IAPMD and one with The PMDD Collective; you can check them out below.
I’ve finally got childcare sorted for going back to work. Kaiser has had his settling in sessions, he did really well, especially as it’s at two different settings. We’ve been together for such a long while now that I imagined him to be clingier, turns out if you have snacks and give him lots of attention, he’s anyones’
I have a few things going on health wise. Mentally, I’m trying to prepare for being discharged from the perinatal service, and it’ll come as no surprise that one of my confessions is that, I’m terrified. I’m worried of how I will measure up without a team of people supporting me and fighting my corner. Physically I’m still waiting on test results for a second diabetes check, and appointments for my heart issues as well as physio.
I’m due to return to my job in less than a week, so I’ll have to adjust to life back on the 9-5 for those two days. I’ll confess that I’m not looking forward to it. To say that I am would be a lie. In all honesty, it’s nothing to do with work, they’ve been great and supportive. It’s all to do with me! The reality is I don’t know how I’m going to fair as an increasingly disabled person, and mother of two other persons, back in the working world. With our financial situation as it is at the moment though, there is no other viable option and this makes me very stressed indeed. I feel like I am only just coming through my recovery journey of perinatal mental illness and regaining my mobility, whilst still managing an ever increasing list of health problems, and I’d be lying if I said I didn’t think work was going to upset the equilibrium I’ve finally established in my everyday life.
I’ve realised since being involved with IAPMD this month how much I love my advocacy work and I’d really love to be able to keep giving back, writing and making a difference but again, I don’t know how achievable that will be once I’m back doing what I have to, to put food on the table. That said I still really want to expand my blog, upload the fiction I’ve been working on and share that with you all. I also have a new interactive feature coming soon!
Dear Steph is a new agony aunt style feature where I’ll be answering your questions about almost anything! Just for fun. My friend Amy keeps on telling me how wise I am, and during my collaborative work with House21 I was often told I should cameo on their Dear Donna feature! So I thought fuck it, and decided to go for it.
I hope you’ll send in your problems or confessions for me to comment on to divamumsteph@hotmail.com adding Dear Steph in the subject line. It can be 100% anonymous if you so wish. Serious and funny/questions/problems welcome.
There are a few restrictions, mainly because I need to protect myself and make sure I’m offering support to anyone who writes in. (Knowing my luck nobody will -LOL)
Important to note, I’m not a professional so if your topic includes any of the following please seek professional support.
Sexual assault
Illegal activity
Health issues that require a medical opinion or further investigation.
I will happily give my advice, personal opinions and share my experience on mental health and or chronic illness, but if you require specific medical advice please seek support from a qualified practitioner.
I want to hear your most embarrassing moments and comment on them (no judgement here) I want to hear about your relationships, struggles, motherhood woes and workplace dramas. Is your mother in law driving you up the wall? Have you fallen out with your best friend? Maybe your partner is giving you the ick? Or are your kids’ as feral as mine and you need some reassurance that it gets easier? Basically I’m trying to fulfil one of my younger selfs’ dreams of having my own agony aunt column in the back of That’s Life magazine. So do me a solid and send in your woes and faux! Dear Steph will start as soon as your emails come in, and I’ll respond to one a week, once a week, on a Thursday.
Oh Little You. What if you had known that this journey of menstrual hell, poor health, psychological trauma and self sabotage would eventually lead you to finding your best, most compassionate self? If you had known this would you have been kinder to you? I wish that you had, it may have made the road here easier. The paths you walked were often the wrong ones, but it wasn’t entirely your fault. You have an illness, several actually. A brain that absorbs too much and erupts like a volcano every few weeks. I wish you had believed in more holistic methods like therapy and diet much sooner as they may have helped you earlier. I wish you’d given yourself more opportunities and grasped life with less fear. I also wish you’d known that PMDD was lying to you. People didn’t always hate you, some did, and some didn’t know how to handle you, but I wish you hadn’t let PMDD convince you it was always your fault. That you were just some fucked up kid that there was little hope for, because that wasn’t true. I wish you had believed in your creative self sooner and found better ways to self soothe.
Right now in the present day, you are managing a lot, but you have the experience now that Little You didn’t have. The lessons you have learned and the life you have led, have not been easy. Without those lessons and life choices though, you may have never made it to this point. I wish you had known that when you felt as though you were fighting against the wind, that storms come and go. That it never stays dark forever, that believing your life is inherently terrible will only leave you feeling, terrible! PMDD has kept you stuck, on a loop of misery that left you feeling inadequate, wrong, and misunderstood. It didn’t tell you that one day you would be proud of your journey. That when you felt suicidal you didn’t want to die, but instead for the way you felt in those moments to die. For it to stop.
Little You should know, that you’ll also learn a lot from PMDD. You’ll learn that better days come. That somethings are out of your control. That life is a marathon and not a sprint and that deep down you are not some angry, misunderstood teenager. You’re a person that will grow, heal and learn.
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.
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)
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!)
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
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”
If you suffer from anxiety, or the feeling of impending doom and inexplicable terror that comes with panic attacks, the debilitating calamity that is intrusive thoughts, the unrelenting personality shift before your menstrual cycle because of PMDD? I hear you. I see you. I am you.
If you suffer from one or all of the mental illnesses mentioned above, you will know that logic is about as far away from fear as is possible. You may as well fly a rocket to Mars and you’d be no closer to logical thoughts during a panic attack. I’ve been having therapy for five months. The single longest stint I’ve ever managed to stick at anything relating to my mental health that doesn’t come in a blister pack. Full disclosure I take the pills too, I need them, but therapy is a different level of healing. It’s eye opening, confronting and real hard graft.
During these five months I have had breakdowns, many breakdowns. I have also experienced breakthroughs. These tend to be subtler, less outwardly monumental, but I can tell you from experience they are transcendent and quite awe-inspiring when you become aware of them.
I’m going to give you an example of one of my recent breakthroughs.
I am currently waiting for several hospital appointments, one of them may end up being quite life defining so it’s pretty important. With anything of importance for me, almost always comes anxiety. Throw in a self diagnosed terminal illness via Dr Google and we’re talking full blown life limiting panic attacks. But, not this time. I got my appointment letter a few days after the referral was made, though supposed to be seen within two weeks the NHS backlog means the clinic are running two weeks behind. Where as this kind of delay would usually lead to more panic, endless overthinking and probable sleepless nights, something has shifted in me and I feel different.
My logical brain has always known that there is little point in worrying about something that hasn’t happened yet, but regardless of my knowledge I have never been able to stop myself from said worry.
Worrying about tomorrow, steals today’s joy.
After going through what I have in the last five months, being scared of my own brain and constantly coming up against new challenges in trying to change the way I think, I decided right at the beginning of my recovery that I no longer wanted to live in fear. Of course simply not wanting something isn’t usually enough to stop it from happening. But with subtle changes and a keen desire to get better, engaging and working hard during therapy sessions and opening up fully to my mental health team, I have noticed a shift. I still feel anxiety around the appointment of course, but anxiety itself is a normal healthy human response. It only becomes problematic when it interferes with our everyday lives. And in this instance, relating to this appointment….I’m so happy to say it’s not doing that.
I don’t want to waste time worrying about an outcome that I cannot predict or influence. I don’t want to fear the worst only to find out when the time comes that it’s not the worst, then look back regretfully that I had wasted precious moments living in fear.
What if it isn’t a tiger in the long grass? What if it’s just a fluffy little kitten?
I won’t bullshit you, I know I’m not always going to be able to rationalise in this way. So many factors contribute to my own personal experience with anxiety and panic, that there will inevitably be times when I falter, and times when I fall. But what I’m doing right now, today, is I’m saying no to worrying about things that aren’t within my control. Isn’t anxiety itself a deep rooted need to control our fears and possible catastrophes?
How did I get here?
I took on board the offerings of tips my therapist suggested, such as grounding and breathing techniques and practised them even when I didn’t believe in them.
I reminded myself that if there’s a possibility that my world might fall apart, there’s also a possibility, it won’t.
I take prescribed medication religiously and stick with it for the recommended amount of time.
I’m trying, I say trying because I don’t always succeed, to implement healthier lifestyle changes, such as getting more exercise and eating healthier.
I write my feelings. It’s a personal favourite in helping me to process them.
I try to stay more in the present moment.
I have an amazing mental health team that I talk to regularly, even when I don’t think I have anything to say.
I know these things aren’t easy to do, I know this because it’s taken me twenty years to even begin to start really healing. But along with the above list, I also believe that celebrating small wins is a great way to remind ourselves that even when we are not where we want to be, we are further forward than we once were.
Me this week on a particularly bad day. Reminding myself it’s just a bad day not a bad life. Also me this week on a better day
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.(Updated with a study showing a potential link between severe PMS (PMDD) and Antenatal Depression)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 altogether with seemingly no rhyme or reason. Antidepressant medication in particular SSRI’s can help manage symptoms, but again, in my experience for the treatment of PMDD long term, they tend to need changing, and finding the right type and dosage is a lot of trial and error.
After menarche, my PMDD became 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 (which 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. Being that an extreme sensitivity to sex hormones effects me in a major way.
PMDD shouldn’t impact your ability to conceive. However, trying for a baby whilst managing PMDD can be difficult. This is especially true 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 surgery as an option, which of course can put added pressure on timing, if you want to conceive and have a biological pregnancy. 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 PMDD.
Though classified as an endocrine disorder with severe psychiatric symptoms, PMDD has many physical symptoms also, including joint pain, migraine, and profound fatigue, that can often be mistaken or overlap with other illnesses. In my case I have fibromyalgia which is much worse during the luteal phase of my menstrual cycle, and I have heard of other people often get diagnosed with secondary conditions as a result of living with PMDD too.
Looking after your mental health must always be a priority. This means including during pregnancy, but it’s scary when you’re offered conflicting information, and promises of symptom relief aren’t necessarily helpful either.
‘At least you get a break from PMDD’ was something I heard, that unfortunately for me turned out to be incorrect. We know, and it is constantly proven, that even those of us with the same diagnoses will experience symptoms differently and hormonal changes will impact us all in very different ways. Pregnancy is one of the most obvious examples of this. Some women claim to barely know they’re pregnant, while others (like myself) find the process insufferable.
What’s important when seeking support is finding a healthcare practitioner that is aware of your diagnosis of PMDD and preferably one that is familiar with the condition.
When I found out I was pregnant this time, I specifically asked to be cared for by the Perinatal Mental Health Team. Though there was quite a lag from my reaching out to getting adequate support, when I did finally receive help it included regular discussions with a mental health gynaecological consultant who specialises in the crossover between mental and 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, as well as the likely need for me to be prescribed antidepressants again postpartum. Even if I don’t feel I need them, which is the outcome I’m hoping for, I’ll have a prescription ready and a doctor in the know who will help me monitor the impact.
Pregnancy is hard on our bodies, but when you have a hormone sensitivity it can be it’s equally as hard on our minds, if not harder. If you are someone who is prone to mental health problems, or somebody who lives with a mental illness already, the need to receive the right healthcare becomes even more critical.
https://iapmd.org/ the International Association for Premenstrual Disorders have a provider directory on their website, along with lots of other vital resources that can help you find doctors in your area that specialise in PMDD.
Finally, if you’re pregnant or considering pregnancy and you have Premenstrual Dysphoric Disorder and are prescribed SSRI’s as a treatment, it’s important not to stop taking your medicine without first discussing this with your doctor or midwife. Abrupt cessation of these types of medications can have a negative impact on you and your pregnancy and should always be done under the guidance of a physician.
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.
Diva Mum 