To be livid that PMDD was only just recognised as a thing by the World Health Organisation?

[Wishingforanotherlife]

I've searched through some of the threads on here and don't know if this has been discussed already but I'm just gobsmacked by this.

Watched the BBC report about it the other week where they interviewed about 4,000 women who told their (horrendous) stories. So this is a condition that affects 5% of the world population and it's basically been ignored until last year. And unless you've got a very sympathetic GP, getting a proper diagnosis is still subject to luck and chance rather than being taken seriously!!

Even some of the thread started on Mumsnet have little or no responses. Or maybe I'm missing something.

The fact that so many medical professionals haven't heard of PMDD suggests, to me, that 1 in 20 women is an over-estimation of the amount of women who suffer with it. Talking to GPs here and women who suffer from it, the opposite is more likely be true.

It is an endocrine imbalance. Measurable. Not a hormone imbalance
but hormone sensittivity - so the normal hormonal cycle is unbearable by some. It affetcs 2 - 20% or all women of child bearing age (look at that number.... how many slip through that %). Over the last 3 or 4 years it has been shown to be a genetic disposition, inheritable. But it is usually dismissed as just PMT, women's troubles, time of the month etc. So, as seen here, it is ignored. Women don't seek treatment because every woman around her tells her it is normal, she's just being weak! Not at all odd if it does run on families - "Yes love, your nana was a martyr to her monthlies, and she had 8 kids. Buck up!"

My diagnosis was made clinically, 30+ years ago. The knowledge has been 'out there' for longer. The rigourous research wasn't done because "women". Now here is more research and more specific evidence of causality. And it is NOT essentially a mental illness

I find some months SSRI's aren't effective during my fortnight of misery. I definitely fall into the madness every month some are worse than others.
I've been convinced for 2 weeks DP should leave, that he is not helping enough etc etc, he is very upset this month it was tough.
It is hard to be in charge of the family when your falling apart.
SSRI's kill me real emotions.
Everytime my sisters breakdown over DM,s early unexpected death from Covid I sit there like a stone. I was the closest to her my hearts is broken inside somewhere, my emotions are so cold and untouchable.

I’m more livid about the fact that the mesh which was fitted to women’s wombs causes absolute carnage to their insides , causing hysterectomy etc is only just being recognised. After women lost the chance to have children, lived in agony, were
Constantly dismissed by gp, Doctor, specialists etc. That’s something to be livid about after the irreparable damage was done. At least you now have the chance to do something about PMDD.

I remember reading an article many years ago about a woman with PMDD who had been charged with a criminal offence (I think she assaulted her partner but can't remember) and her legal defence was that she was basically not in control of her actions at the time.

The symptoms sound very similar to what I experienced when I was briefly put on Clomid when I was TTC. Highlights included being sent home from work because I was crying over not being able to do something in an Excel spreadsheet (and I was the least likely person to do this ever) and feeling an incredibly strong compulsion to just drive my car off the road and into the canal.

The dismissive posts early in this thread illustrate perfectly why this condition is so little known.

Its horrendous. Luckily family clinic were amazing. Found right pill for me and vo then prescribed SSRI which really helped with balance

To all saying PMDD is PMT
It’s not.
My friends mum would experience major psychotic episodes the same week every month for years and it was ONLY that week of the month this would happen. It god so bad she committed suicide because no one took her seriously.

The responses the Op has had are absolutely telling, about the general levels of awareness and understanding about This condition. People don't know, or they think it's PMT. or they behave like a dick towards the OP because she's talking strongly about something to do with women's health.

Yes it's a fucking disgrace. I don't have it, no one I know has it, but I do realise that this does not mean the condition does not exist.

It's another example of women being at the back of any queue ever

What chance do we have when women's health issues are trivialised even by other women? Some of the responses on this thread are so dismissive and lacking in empathy. I posted this on another thread asking for PMDD experiences, maybe it will give the "oh ok, so it's just PMT" posters pause for thought.

For about10 days leading up to my period I feel absolutely desperate. I loathe everyone and everything with an intensity that frightens me, including my nearest and dearest. I think about walking out on my (wonderful) DH and my (interesting and rewarding) job. I have no interest in seeing friends. I feel hopeless and that my life has no meaning. I am forgetful, my concentration is shit and having to make even the smallest decision seems overwhelming. I am so angry, I feel as though I am on the verge of screaming all the time. I cry at the slightest thing. I can't sleep and I'm too anxious to eat. On top of this as the week progresses I feel more and more physically unwell. It feels like I'm coming down with the flu- everything aches, I feel nauseous and my stomach is easily upset, i am completely exhausted. The worse I feel physically the more difficult it is to cope with the emotional symptoms and I start to think that it would be better if I wasn't here. I start to think about how I might end my life. I've gone as far as googling methods and starting to formulate a plan before.
Then my period comes and within a day or two those feelings are just gone. I suddenly know with absolute clarity that my DH is the kindest man in the world and we're perfect for one another, that my job is my passion and I am lucky to do what I do. I start wanting to socialise again, I feel thankful for all the good things in my life and I can't believe that just 24-48 hours earlier I was thinking about ways to kill myself. I feel "normal", if a bit drained from the rollercoaster of the previous 10 days, but it's hard to enjoy the feeling because I know the whole awful cycle is going to start again very soon.
The symptoms have gotten progressively worse after the births of my DC but I've had very heavy periods and bad PMS since I can remember.
My GP is extremely supportive. I was prescribed an SSRI and was hopeful this would help but had to stop taking it as I developed a rare complication that could have been really dangerous. So the next line of treatment would be HRT (which I'm very nervous about, still undecided) and if that doesn't work then a hysterectomy is a possibility but this is only considered as a last resort for PMDD.

@ThisLittleLady that is indeed horrendous and yet another example of women’s issues not been taken seriously. Sadly, all too often by some women themselves who do no one any favours by being so dismissive.

To all saying PMDD is PMT
Definitely not I was hospitalised had severe MH confusion, ended up anoxeric because I'd no control over my rage I decided to control what I could. I suffered with PND after my first, it was a male GP who asked me to keep a 3 month diary and diagnosed me at 30.
Although the issue is severe at least I know there's a reason for it. I work part time to hide my demon, I find it horrendous to socialise during, talk on the phone, have visitors, every noise is excruciating on a really bad month. I hate phones.

I’m more livid about the fact that the mesh which was fitted to women’s wombs causes absolute carnage to their insides , causing hysterectomy etc is only just being recognised. After women lost the chance to have children, lived in agony, were
Constantly dismissed by gp, Doctor, specialists etc. That’s something to be livid about after the irreparable damage was done. At least you now have the chance to do something about PMDD.

It is possible to care about more than one thing simultaneously you know
But you're right of course, I should be grateful for the chance to start HRT in my early thirties and a possible hysterectomy due to PMDD.

Why not be pleased they have recognised it now? That's a great step forward. And livid it wasn't recognised for so long.

I'm 50 now, but looking back I used to have this. It's horrendous and far worse than the usual pmt. I went on ssris to try and deal with it. It lessened with age, but I used to feel terrible when I was young. It's really difficult to describe how you feel as well.

PMDD is awful. I've just marked the calendar in advance of this year and next year in a traffic light system. This gives the family an idea of what to expect from me and my behaviour.

Reading these responses has made me quite emotional about how dismissive some people can be.

When I was in my teens I suffered badly from PMT. Suicidal, incredible pains which made me walk funny and gave me a bad back. highly irritable, wildly swinging from freezing to boiling. Is this what PMDD is?

Explain why the suicidal thoughts, depression and touch paper irritability returned when I had a depo provera contraceptive jab? What is the name of the syndrome that occurs during this when it's all the time and not pre, during or post menstruation?

I'm not being sarky, I genuinely want to know what makes PMT, PMDD and this contraceptive reaction different from one another.

Unfortunately perimenopause means that I no longer have a regular cycle so the PMDD creeps up and even though I should know what it is by now, because I’ve no regular cycle by which to gauge it, it’s only when my period appears that I can say ‘ah right, that’s why I cried all Saturday and wanted to die’.

@Boomerwang I’m afraid I don’t know. What is interesting is that PMDD research suggests it’s not the hormones themselves but the reaction to the changes in them, so perhaps that logic could be applied to all these conditions. Perhaps the fix has mistakenly been to give more/less hormone supplements when the issue has been the reaction. I’ve often asked why, when hormones seem to be the problem, is adding more to the mix the answer? Not one medical person has been aable to answer that satisfactorily.

There are some women on this thread who should be ashamed of their ignorance and lack of compassion instead of so proudly dismissing this as ‘PMT, get over it’. Well done you, you are part of the problem. The men will be along soon with your ‘not like other women’ badge.

I was diagnosed with PMDD 4 years ago after years of crippling anxiety which got worse in the 10 days before my period. Perimenopause seemed to super charge things so that instead of my usual anxiety I was becoming almost psychotically angry, irrational to the point of insanity, crying one minute, laughing the next and then hopeless to the point of suicidal. Sometimes that would all happen in one day. I truly felt like I had gone mad sometimes and then I’d start my period and feel normal for a few weeks until the next time.

My GP, a man, was sympathetic, said it’s PMDD but all he could do was offer me citalopram or the POP, a print out from a pmdd forum about supplements and advise counselling which I would have to pay for myself.

And that’s a good experience for someone with PMDD!

I manage mine well now but having spoken to other female relatives on my mum’s side, it definitely seems to run in the family.

I wonder how many women are diagnosed and medicated for anxiety, depression or biplolar when what they have is PMDD.

@Boomerwang I did a lot of reading when I was first diagnosed and realised my symptoms were at their very worst when my progesterone levels were at their highest. This seems to be the hormone that plays the most havoc with your MH.

Hormonal contraception gives you a fairly high and consistent level of progesterone instead of the fluctuating levels you get in your usual cycle so that might be why you had those symptoms after the jab.

I was prescribed the progesterone only pill and honestly think I would have gone off the rails entirely if I’d taken it.

The BBC article isn't really accurate (shocker, mainstream news fucking up a science report), at least about the WHO part.

Last year, the WHO included PMDD in the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11) which gives it it's own ICD code separate from other menstrual disorders and gives recommendations for member states.

It's also been funding and recording research into it for a few decades now. Getting its own ICD code does change things and is a great step, but it isn't that the WHO 'just recognized it', it's that the process to be listed separately (rather than as an extreme version of something else) is a very lengthy process. They don't just list conditions, they list our current understanding of the biological processes involved, different levels of recommendations, and so on.

The issue is far more that funding into women's health means it takes a long time to get the evidence needed for its inclusion separate from other diagnoses, not that the WHO didn't think it was real until now.

Many years ago, in the 60s, the daughter of friends of my parents was behaving very irrationally for days at the time. It culminated in her setting fire to their house and being sectioned for a few months. It was only when someone in the hospital noticed that it coincided with her periods that they realised that it was hormone based not a mental illness. This poor young woman who was about 19 at the time had gone through so much, was finally treated and went back to being the lovely person we all knew. So this has been going on for decades.

I was gutted when I was told by my GP I can't take SSRI's for my PMDD as I had hoped that would be the solution, or at least take the edge off. Now that option is closed to me I had decided that I should tell my Line Manager about my PMDD and ask to work from home for a couple of days a month when I know my symptoms will be at their worst. Trying to hide the anxiety, paranoia and random tearful outbursts (on top of the vomiting and diarrhoea that usually accompany the MH symptoms) at work is so stressful and I felt this was a reasonable adjustment. But reading some of the responses on this thread have made me think I shouldn't say anything. I don't want her to think I'm skiving or that I'm so pathetic I can't cope with a bit of PMT

People who are too stupid to google shouldn’t be online without adult supervision.

PMDD is a very serious mental illness that kills people. It has nothing to do with PMT. That’s like saying schizophrenia is basically just being a bit worked up.

Christ, did everyone eat a big bowl of Cunt Flakes for breakfast, or is it the heat?

blurpityblurp Technically, it's an Endocrine Disorder and not a Mental Illness according to my GP, but I certainly feel like I'm going mad the week before my period! "Did you eat a big bowl of Cunt Flakes for breakfast?" will henceforth be my new favourite insult

@welcometohell I’d tell your line manager. Don’t let the ignorance of a few idiots on here put you off doing what’s for your best Interest.

Most people are compassionate and intelligent enough to get it when it’s explained. And now that is it recognised as a stand-alone and serious condition you should get a positive response from a decent line manager or HR team.

Being shamed into silence is what’s kept this thing under the rug for so long. Don’t let them do that to you.