Ask Me About PMDD

Earlier this week I shared the below image to my Instagram stories and gave you the opportunity to ask me any questions you might have about PMDD.

Image used with permission from IAPMD

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.

Radical Acceptance – What it is, and what it is not.

I’ve mentioned on my socials recently that I’ve become more accepting of certain aspects of my life. First and foremost I’ve accepted the fact that I am disabled. It’s taken me seven years to fully get on board with the idea that this is something I must accept. In fact, my acceptance came very recently whilst attending a course of Dialectal Behavioural Therapy. One of the sessions was based solely on radical acceptance and what it means.

So, tell us, what is it?

In a nutshell: Radical Acceptance is a skill in Dialectical Behavior Therapy (DBT) that helps people learn how to accept very painful events, challenges, people, or aspects of their life. It’s one of the skills found in the Distress Tolerance module of DBT.

Radical acceptance for me personally has been about the above, accepting my illnesses and the fact they are life limiting, but that there are still moments, days, weeks, that are good. Sometimes even great. Radical acceptance has also played a role in how I relate to my pregnancies, my early motherhood experiences and things in my past that I cannot change. Major regrets and mistakes that I have made that have played an overwhelming role throughout my life.

So are you saying we should accept people who treat us badly, or forgive ourselves or others for things we’ve previously felt were unforgivable?

No. Foremost, radical acceptance doesn’t mean forgiveness. You can regret something you have done, dislike the part of you that did it and still accept that it happened. Similarly with actions of others. For example if you’ve been in an abusive relationship and your partner has hurt you badly, radical acceptance isn’t about forgiving the person who hurt you, or continuing to accept abuse. It is about accepting a situation, to help you gain the most peace and enjoyment from your life. If hatred for that abusive partner is eating you up, or if because of the trauma you suffered, you’re too scared to go out, practising radical acceptance can help you move forward to live a life more inline with your personal values. You do not have to forgive someone’s mistakes, you just have to stop letting them take up space in your head. I know it’s not easy. Another example for me: I have many regrets but one in particular has been eating away at me for over a decade. Everyday I was continuing to punish myself by telling myself I was not a good person. My ruminating became so bad it was affecting my parenting, I was having daily panic attacks and feeling as if my family would be better off without me. When learning about radical acceptance the psychologist advised me that I didn’t need to forgive myself, I could still hate what I’d done and understand that I could not change it. I could accept that it happened and try and build a life for myself, or I could continue to ruin my life by going over and over the same thing. In doing the latter I was hurting my family because they were worried for me, and that only served to make me feel more guilty and unloveable. RA is complex at first, but once you come to learn more about the concept, practice radical acceptance of the little things, like spilling cereal all over a freshly washed floor, the easier it becomes to do it with the big things. Like me with my regrets and my health.

Another one that I’ve been practicing (if you’ve been following my blog for sometime you may have come across me talking about this before) is the acceptance that sometimes people won’t like me and there’s absolutely nothing I can do about it. I don’t like everyone, in fact I’m quite selective in the people I call friends. But when it comes to others not liking me, I have been known to take it really personally. I’m not sure why, maybe it’s an abandonment thing, or a need for external validation. Anyway, the point is radical acceptance has helped me manage the impact of this and get outside of my own head.

If it were that easy we’d all do it

I know. And it isn’t easy. Therapy never is though. I think the first thing to remember with RA is that it’s about not fighting with your reality. Not actively trying to overcome something. Instead allowing the feelings you have about it to be there, but not take over. One of the psychologists on the course I attended, gave a good example of how to practise RA in the everyday. She used the analogy of being late. You know you’re late, you could stress and rush to get to your destination faster but you’re still going to be late. And if you stress and rush you’re likely going to feel worse. So accept that you’re late and are still going to arrive late, but this way, hopefully in a much calmer state.

You may never fully accept trauma you’ve experienced, and that’s ok.

The idea of practising radical acceptance isn’t to negate every bad feeling you’ve ever experienced, but to better manage those feelings when they are taking over your life.

Try it with the small stuff, and if it feels too traumatic to build up to the big stuff on your own, consider a course in dialectal behaviour therapy. My personal experience of DBT is that it’s worth it’s weight in gold when learning to manage painful and intense emotions. Being a big ol’ bag of emotions almost permanently, it’s been a freeing and life changing experience for me.

For more information on DBT click here

Maternal Mental Health Awareness Week.

MMHAW runs from 2nd-8th May 2022. It’s purpose is to raise awareness for mental illness and mood and anxiety disorders that occur during the perinatal space. The perinatal space is considered to be from pregnancy right up until your child is a year old, but in my personal experience this fluctuates for everyone. Last year during MMHAW, I was pregnant, and in a very dark place. I opted not to get involved in much awareness raising, though it was a decision that I found difficult, because spreading awareness of topics such as this, is so important to me. However, whilst these weeks/days/months are so important, they don’t come without triggers. So I want to let you know, if you’re in the perinatal space, just out of it, or five years postpartum, if spending too much time online is proving triggering for you right now, please take a break. Not feeling able to spread awareness is ok. Joining in for one day is ok. Wanting to get involved in the whole shebang is ok. Having good intentions and then changing your mind? Also ok.

Last year just before MMHAW and Maternal Mental Health Awareness Week Blog

Maternal mental health/illness is complex and the effects are different for everyone. We’re often warned of postnatal depression but maternal mental health is so much bigger than depression alone and definitely doesn’t just occur postnatally. I’ve had two babies and suffered with my mental health with both, throughout pregnancy and during the perinatal space. But the effects of each illness were very different. For example with my daughter I suffered low mood (depression) as more of a prominent symptom. I would want to be away from her a lot and I struggled with bonding and finding my identity as a mother. With my son, anxiety and intrusive thoughts were the overriding emotional responses to pregnancy and for a long time postpartum. I couldn’t be alone with the children for weeks after his birth, I felt as if something bad was going to happen whilst they were in my care. I had many intrusive thoughts and my main fear was of developing psychosis. Funny really, because the fear of this very nearly tipped me onto the scale of being psychotic.

Have you ever considered the language used in relation to maternal mental illness?

The reason I ask this, is because I have realised as a sufferer and survivor that we are still relatively behind in how we refer to maternal mental illness. Many people still only resonate with the term postnatal depression except we know that postnatal is just one period within the perinatal space. We know that depression is just one of the many perinatal mental illnesses that affect women during this time period.

Other types of maternal mental illness include

  • Maternal Anxiety
  • Maternal OCD
  • Peri and postpartum psychosis
  • Maternal suicide
  • Exacerbation of existing mental health conditions such as bipolar disorder and obsessive compulsive disorder
  • Development of menstrual disorders postnatally

Organisations such as PANDAS often now refer to mental illness that occurs during the perinatal space PMADS which stands for Perinatal Mood and Anxiety Disorders. Others refer to postnatal depression as PND or PPD and some like myself who suffered both depression and anxiety refer to it as PNDA. Perinatal depression and Anxiety. The terminology might not seem overly important, but what is important is the level of understanding and knowledge, that maternal mental illness is not just one symptom, it can often include all of the above at the same time.

I’ve just finished ten months of medical and therapeutic intervention since giving birth to my son in July 2021. I am also medicated for both anxiety and PMDD. Having my children crippled me physically, it shattered my mental health and any equilibrium in my life disappeared. I love my kids, that’s not in question. Though I found growing, birthing, and caring for both of them during the perinatal period, traumatic in the extreme.

What really saddens me when I look back now is that I cried out for help, particularly in my second pregnancy. From just seven weeks pregnant I asked for mental health support. I was told I wasn’t anxious or depressed enough at that time. There was no preventative intervention, nobody to guide me. Particularly as I carried my son during the height of the 2020 pandemic. By the time I was admitted to hospital on the verge of psychosis, the damage had been done. Not only did I need to recover from the trauma of a debilitating pregnancy, I had to do so whilst mentally very unwell and with two children to look after. I still believe that if I had been referred to the perinatal mental health service earlier in my pregnancy my experience would have been very different. You can read more about my experience during my second pregnancy here. Pregnant and chronically ill.

I haven’t shared Kaiser’s birth story, because still to this day, ten months on, after much therapy and support, I find it a harrowing and destabilising time to reflect on. I can talk about it in conversations but I struggle when recalling the details and writing it all down. It causes me pain. And whilst I’ve worked through a whole heap of trauma and accepted my illness, delving into and sharing the true extent of my thoughts is not something I’m completely comfortable with yet.

What I am willing to do is share a quote from the day he was born. A quote that I wrote in the notes on my phone during our first night with Kaiser.

I feel scared of my baby, scared of what the responsibility of being his mum means. I’m missing my other baby, I can’t cope with this one too. Am I a bad mum? I don’t want to be here, in this room with the yellow light and the sound of feet moving and trollies rolling outside of its door. I don’t want to go home either. I just don’t want to be HERE at all.

12.10am 02.07.21

There is a lot of work being done by charitable organisations such as PANDAS as well as The Perinatal Mental Health Partnership to find out what’s causing huge hold ups for people waiting for mental health care during the perinatal period. NHS England are also working on extending the time you can be supported when suffering perinatal mental illness. It’s currently until your child is a year old, however many women find symptoms of mental illness might occur later in the perinatal period and need further or ongoing support.

If you are struggling with your mental health at all please reach out to your GP or one of the organisations listed below. You’re not alone. If you feel like you’re not getting anywhere with your GP ask to see someone else. If you or someone you know is suicidal please visit your nearest A&E department or call your maternity unit immediately. Mental health care is for women during the perinatal period is as essential as physical healthcare.

News

I’m delighted to announce I have been nominated for two categories in this years’ Mental Heath Blog Awards.

MHBA are a way to showcase patients and advocates in the mental health community and it’s an honour to have been nominated.

See full list of nominees and their categories here. Voting is open and it would mean the world to have your support. 💚

Please click here to vote. 🗳 🗳 🗳

It’s time…..

5 things not to say to someone with mental health problems.

1) But why are you depressed? What have you got to be depressed about.

Maybe nothing. Why have you got a cold when it’s warm outside? Getting the message? Things that seem trivial to some are huge for others and maybe there’s not a specific reason. Remember it’s a chemical imbalance, an illness like any other.

2) It could be worse, you need to think yourself lucky.

And you Karen, need to shut the fuck up. We know it could be worse. It could always be worse. But honestly, that’s irrelevant and unhelpful.

3) You just need to ______ (insert unsolicited advice here) go to the gym, eat better, go out more, lighten up. Etc etc.

Again, unhelpful and bordering on offensive. A) We may have already tried what you mention or B) We may not feel able or ready to tackle these ‘small’ things yet.

4) Chin up, cheer up, smile…

Suck a dick, eat shit…. see where I’m going with this?

5) At least you haven’t got____ or you’re lucky to have_____

Don’t state the obvious. This is the reason many people feel unable to speak out, in fear of being ridiculed or not taken seriously.

These things may seem obvious, they may seem a bit pedantic but to be frank, they could save someone’s life. In my experience someone who is really suffering mentally needs the opposite of what these words convey. They need a listening ear and empathy, not an I told you, you should… or a chin up! The age old saying sticks and stones may break my bones but words will never hurt me, doesn’t apply to people with depression. All it takes is a little bit of rephrasing on your part. Nobody expects you to walk on egg shells but try to put yourself in that persons shoes and ask yourself if you would find the above 5 things helpful to hear in your time of need. If the answer’s no, stop saying them!