Now, let me clear something up quickly. PMDD is not the same as PMS, it’s incredibly severe, debilitating and a very confusing experience for PMDD sufferers. For instance, many sufferers will convince themselves that they are evil, are going crazy or have a “split personality” which is not the case. This is also why raising PMDD awareness is so important.
Now, if you feel this way in the second half (luteal phase) of your cycle (Cycle day 14 and onwards until day 1 of a new cycle), the chances are that you may have PMDD. Now since PMDD is currently classified as a rare condition with only 5% – 8% of women being affected by PMDD, it can be incredibly difficult to get a formal diagnosis and accessing treatment options due to PMDD not being recognised by most doctors and practitioners. But now due to there being an emergence in awareness, I believe that percentage of women is likely to become increasingly higher.
Now guess what? I am writing this slap bang during hell week on cycle day 23. And for once, I’m being productive and generally feeling okay on this new treatment so far. But trust me, the psychological pain, failing treatments and not being heard is an utter nightmare.
So to help you get onto the road of PMDD recovery or to help you to recognise whether you have this condition, I’m going to start off with the classic PMDD symptoms and my own personal ones. Now, this post won’t be discussing PMDD treatments themselves, as every PMDD sufferer is different – But treatments will be covered soon on this blog! Anyway, this post is to help you with getting a diagnosis and searching and finding the right treatment for you.
Raising PMDD Awareness Via The Classic Hallmark Symptoms :
- Sore breasts
- Pelvic tenderness as the luteal phase progresses
- Extreme tiredness, fatigue and not being able to stay awake
- Change in appetite/cravings
- Racing heart
- Mild cramps
- Restlessness & feeling “highly Strung” or agitated
- Joint & back pain
- Anxiety & feeling “edgy”
- Extreme rage, anger and drastic mood swings
- Severe depression, hopelessness and suicidal thoughts
- Self loathing, low self esteem and self deprecating thoughts
- Severe brain fog and being unable to concentrate
- Low energy and productivity
- Feeling insecure and unlovable
Raising PMDD Awareness Through Sharing My Own Unusual Symptoms:
- Tachycardia/fast heart rate which changes in a cyclical pattern & only occurs during the luteal phase (My data shown above – the lowest points/dips are when my period starts and the highest spikes occur when my progesterone levels spike during the middle of the luteal phase around day 21). This is possibly due to increased anxiety associated with PMDD and excess noradrenaline/overactive noradrenaline transmitters. I will cover this and psychiatric medication in later posts.
- Green tinge to my vision or “seeing stars” (I call this “Matrix Eyes” because it feels as though I’m watching the world through the matrix with that green tinge – Which is linked to the light sensitivity and sensory overload)
- PTSD and bad memories come flooding back during that time and every. Damn. Month.
- Being “hangry”.
- Needing to pee often.
- Severe paranoia and feeling like people are judging and watching you constantly. One example includes this: Someone could say something completely innocent and you question it. You question whether they mean it in a bad/sarcastic way or assume they’re being hostile. It simply feels like everybody is against you and this stops immediately or a few days after your period starts.
- Body Dysmorphia & body image insecurity – This is always amplified by PMDD and the dreaded bloating associated with it!
- Relationship conflict & major, major trust issues – Whether it’s with a partner, family member or friend.
- Severe Splitting. Although this is a BPD (Borderline Personality Disorder) symptom, you can easily split on people during the luteal phase. People can go from being 100% trustworthy to being plotting against you or betraying you within milliseconds. Also, I want to make it clear that PMDD is not a personality disorder, to which I’ll go back to this part later!
Secondly, It’s NOT Your Fault
Many PMDD sufferers believe that there’s something wrong with them as a result of the trust issues, drastic mood swings and rage outbursts associated with PMDD. But PMDD is a flaw in chemistry, not a flaw in personality, heart or character.
Because it’s characterised by an increased brain sensitivity to hormonal changes related to the menstrual cycle as opposed to a hormone imbalance. This increased sensitivity results in the psychiatric symptoms which can turn your world upside down and cause you to act in a way which does not fit in with your true self or values.
For instance, someone who has schizophrenia or bipolar disorder who is having an episode will suffer from delusions, hearing voices and paranoia. That does not make them evil, they’re just not feeling themselves then due to a chemical imbalance and under active/over active neurotransmitters in the brain causing those symptoms – The EXACT same applies to PMDD. It is a psychiatric condition.
Thirdly, Don’t Let Others Convince you That It’s Not Real…
Because what you’re suffering is REAL. However, people need to raise more PMDD awareness due to it not getting full recognition as a psychiatric disorder.
For instance, many doctors will mistake it for PMS, bipolar or even psychosis which can be incredibly dangerous. For instance, some PMDD sufferers are being put the wrong medications and are even put on antipsychotic drugs. Plus, not many doctors know what PMDD is therefore getting a diagnosis is a hard task let alone finding PMDD treatment.
Many doctors will give advice like, “Just control your behaviour”. You’ll even feel convinced into thinking what you’re suffering is not real when doctors don’t take you seriously.
Dealing with PMDD is also incredibly difficult, scary and heartbreaking for the people around them. Plus, many people including friends, partners and even family will accuse sufferers of “overreacting” or react angrily if they don’t have any PMDD awareness. This adds to the guilt due to the uncontrollable outbursts, emotions and extreme psychiatric symptoms. Then, it feeds into the self-deprecating thoughts, feeling unlovable and insecurities associated with PMDD which goes into a vicious cycle. More PMDD awareness can help to break that cycle.
If you do have PMDD, have these symptoms or suspect that you have PMDD, I want you the remember this:
You’re not any less lovable because of this condition and it’s ugly side. You’re not evil and this does not carry any weight on your heart, character or personality.
PMDD sufferers need to be treated with compassion and a lot of patience. And telling a PMDD sufferer that it’s their fault and that it can be controlled is like telling someone with psychosis to stop hearing voices, having delusions and to stop being paranoid. So before PMDD sufferers can work on reducing paranoia, outbursts and extreme moods, they must get to the root of the problem.
Searching For The Right Treatment For You
Firstly, Track Your Symptoms
There are many period tracking apps and sheets. However, if you want to take things further, I’d highly recommend the “Me v PMDD” tracking app and downloadable tracking sheets here from IAPMD. These are specific PMDD symptom trackers and you’ll be able to track many of the symptoms I discussed in this post.
Many PMDD sufferers differ. Some are sensitive to oestrogen changes, some are sensitive to progesterone changes. However, due to PMDD sufferers being affected during the luteal phase, majority of women are affected by the progesterone fluctuations. It’s also not unusual to feel an immediate change during and after ovulation as I’ve come across this a lot on forums.
Also as I mentioned, PMDD is mostly characterised by brain hypersensitivity to those hormone changes as opposed to a hormone imbalance. For instance, this study even showed that there is a gene mutation which causes an abnormal cellular response to sex hormones – you can read here. But despite this, I would recommend a full blood count to rule out any thyroid conditions as PMDD symptoms can overlap and show similarities to an underactive/overactive thyroid conditions.
Finally, before you visit a GP, I recommend tracking at least 2 cycles beforehand.
Finding a Good GP & Raising PMDD Awareness to Doctors
It’s not unusual for PMDD sufferers to have to visit several GPs before finding the right one. Because PMDD is not recognised by many doctors, I highly recommend reading through this clinical care help sheet here.
This help sheet will help you with questions you may want to ask your doctor and ways to raise awareness to them. However, it’s much, much easier said than done as I’ve dealt with awful doctors in the past. If you’re having no luck change your GP. Even change your surgery if you need to. Because I’ve only just started having some luck since moving house. Luckily now I have this one GP at my new practice who actually listens to me and who is understanding.
If you’re still struggling and have the money to fork out, I’d recommend using the IAPMD directory for clinicians. All you have to simply do is enter your postcode and the map will show private clinicians which specialise in PMDD. You can take a look here.
Helpful PMDD Awareness Resources & Forums
The r/PMDD subreddit – This is great for discovering what other women have to say. But I must warn you to take it with a pinch of salt as treatments may work for some and may make it worse for others. So to start off with, you should stick with their wiki and about section.
If you’ve already passed the stage of getting a diagnosis or want to see what treatment is out there. Their wiki will also give you in-depth knowledge on all the known types of treatments, medications and how PMDD works. You can take a look here.
IAPMD – If you’re in a crisis or need someone to discuss PMDD with, they offer online peer support, online meet-up sessions and a ton more. What makes it better is that you can connect with volunteers (who suffer from PMDD themselves!).
There are many more resources on this site and stories from PMDD suffers. They’re an amazing organisation and you can take a look at peer support and online meet-ups here. Please also navigate and look at the rest of the site as the resources are incredibly useful.
Mind – Now I’ve volunteered for Mind and they are a really good mental health organisation. I feel like they are much more understanding when it comes to various mental health issues including PMDD.
Their page on PMDD explains the condition pretty well so feel free to check it out here.
Finally, Don’t Give Up!
It took me until almost 27 years of age to find a treatment which does not exacerbate my symptoms. The key is to not give up and continuing to search for the right treatment for you even when things seem entirely bleak.
Before, there weren’t any resources available so make full use of them if you need to.
In my next PMDD awareness posts, I’ll be sharing psychiatric treatment options, lifestyle changes, what helps me personally and a ton more… in full depth!
So research, speak up and stay safe and positive. And most of all, be kind to yourself!