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.

I did not recognised the acronym but had vaguely heard of the disorder. Are you sure the 5% stat is right?

Hormones are powerful things and can impact in extreme ways.

I would be interested to understand the delineation between PMT and this. Where one stops and the next starts.

Given how few of the immediate posts had heard of it I don't think it is surprising that formal recognition is only recent

I'm livid because anything that affects 5% of the world population surely deserves more attention.

Thanks for explaining @OddBoots. That sounds awful. Sadly, women's issues are so often trivialised.

Op, you say you searched through threads to see if anyone was discussing this issue but didn't find any so I'm surprised you're so shocked we are not all experts on the issue considering this. I am sorry you seen to be suffering from PMDD.

I might have muddled myself a bit. It says 1 in 20 women in the report so 5% of women. Since half the population is women, at 2.5% that's still quite a hefty number.

@Hileni I found some but not as many as I thought I would given this is a mainly female site. It is mentioned on very few threads. Given the stats I'd have thought it would be more. But I guess that it's a reflection that folk are have no knowledge of it.

''Hormones are powerful things'' {@GoldenBlue}

Phenomenally so.

Insulin, Thyroxine, testosterone, oestrogen, oxytocin adrenaline &c If one lacks these, or has an oversupply of them , one will feel the effects physically.

@oakkleafy the thing is, it is more common that folk realise, 1 in 20 women according to the report.

I have suffered from it, it is horrendous. Mine came with suicidal thoughts and horrendous anxiety. I now take a mixture of contraceptive pills to manage the hormones and will not come off of them until after the menopause.

I take Zoloft for PMDD. It isn't "basically PMT" it whatever you all call it. It's much worse than that. I am surprised at the WHO; my gynecologist diagnosed me about 12 years ago. He knew it was a thing, why didn't they?

@Browniegal13

I have been back and forth to the doctors much of my life with ALL the symptoms but not once has PMDD ever been mentioned, not even by the women's health doctor or the specialist gynaecologist at the hospital. You'd think in the profession they'd at least have heard of it.

Never heard of it before.

I learned about PMDD on Mumsnet and then went and read up some more about it. I wholeheartedly agree with you that it should have a higher profile. Sorry you didn’t get more positive replies earlier in the thread- it’s always hard to know how much to put in your original post. It’s information I have shared with female family and friends.

OP, I have been diagnosed with PMDD .
I got the diagnosis because I took part in a trial for treatment of it. I had to keep mood and symptom diaries for 6 months. I then had to inject myself with serotonin in the 2 weeks leading up to my period (or a placebo but it turns out I was getting the good stuff!) It really worked for me, there was a massive improvement in my mood diary but unfortunately the research was stopped as those using the placebo also noted improvement in their mood. The conclusion was that just by feeling listened to and having recognition of their condition helped improve symptoms.
I have suffered for years with this condition and it does upset me to hear the attitude "it's just PMT" and the mentality that we should get on with it. In the weeks leading up to my period I suffer with horrendous mood swings. I can cry at work when I'm usually very together, I can have screaming meltdowns at my husband over the washing up when I'd usually let it go, my motivation is low for exercise, although exercise does help, I'm exhausted and emotional. I can end up sobbing over one daft comment from someone. I am definitely more assertive (argumentative!?) In those weeks. I have a good partner luckily and we are able to laugh at my meltdowns.
I'm getting older now and classed as perimenopausal. It does get worse in this time but at least I hopefully only have it for a few more years. I would happily have a hysterectomy and go on HRT if NHS would do it.
For those that don't suffer in this way - it's not just a bad mood. There is a physical cause. It's thought that raised testosterone suppresses serotonin which is the Feel good hormone. I'm not sure if I have higher than normal testosterone or if it just affects people to varying degrees.
It is nice to have some recognition. Treatments now are limited to Eloine (this is the only contraceptive pill NICE have approved for treatment of PMDD ) or an SSRI (anti depressant) for 2 weeks a month.
Hope that helps for those that don't have understanding of this condition.

one person doesn't know what it means
one person thinks using the acronym is unreasonable - would using PMT also be unreasonable

Could you make that two for both?

These replies are shockingly ignorant and really sad 😔

Im pretty sure I get this. Its horrific. Its much more than PMT.

God that sounds absolutely horrendous for those of you who suffer from it. Thanks for raising awareness, OP. I hope find a more educated doctor and get the help you need to manage the symptoms.

I've been diagnosed for PMDD - It's utterly hideous.

I always had mood swings before my periods but they got worse and worse as I got older. When I became pregnant, I also became suicidal and terminated at 12 weeks as I was going to kill myself - never had any MH issues before and never had any anti depressants.

After that, every month my mood would drop further and further and it was like I was a different person.

Imagine a 'normal day' -
Highly paid, very professional job in very buoyant market, great Husband with no relationship problems, lovely family and friends, lots of hobbies etc....(obviously my life isn't perfect at all... but I'm mostly happy with my day to day life!)

Then before my period -
My Husband is obviously cheating on me with prostitutes, my sister hasn't replied to my WhatsApp message I sent 10 minutes ago as she hates me as I've somehow offended her and now she's slagging me off to my other sisters. My friends are all bored of me and don't want to meet me and are only doing it out of pity. My Boss went into a meeting with his Boss and I know it's about me and they're going to sack me and I'm going to be unemployed and won't find another job as I'm useless... I actually don't know why I stay alive, there is no point, I have nothing going for me, I'm overweight and noone cares......

It's almost like a psychosis and every month for 7-10 days I was having to literally 'mask' these feelings and thoughts. The only way I could get through it and literally 'endure' it was to not see anyone, cancel all meetings with friends / read - reread and then re-read again every single text message in case it 'offended' someone and then wait ten minutes before re-reading it before sending it I really had to reply. Same with work emails. It was exhausting.

As soon as my period came - The switch was flicked back and I couldn't believe I had these thoughts in my head as my life really isn't terrible and I don't believe anyone hates me or thinks I'm incompetent... ... but then 3 weeks later, my mood would decrease again and I'd be thinking those same thoughts and nothing anyone could say or do would change that.

I am very lucky that my Husband is incredibly supportive and at no point has he ever got angry with me saying 'I can't believe you changed the bedsheets before I got home, you're obviously sleeping with someone during the day"so he'd point out that we have CCTV outside.... he'd point out he did it so the washing machine was free for my gym gear later on... he'd offer me his phone / email to read (I've never said yes as I think this is a slippery slope) but he'd do anything to reassure me he wasn't cheating - but how exhausting for him and what a horrible thing to have to live through, knowing every month your wife is going to assume you're cheating / you're going to leave etc.....

Thankfully I have really supportive GP's and after trying a number of herbal / non prescription things, I accepted that I needed something more and after trying a few different anti-depressants, found that fluoxetine (prozac) was a game changer for me. Just 10mg so the lowest dose possible.... but that is enough to effectively 'block' the hormones and make my life so much more stable.

If it was a common thing, it woulds be spoken of a lot more?
Nonsense!
For years endometriosis was not spoken of.
For years pregnancy loss was not spoken of.
For years issues with vaginal mesh were not spoken of.
The list goes on and on and on...
And for years mental health issues were not spoken of, due to stigma (still very stigmatised, in fact)

Since this is both about women's health, and a mental health issue, I'm not surprised it's so poorly documented and understood. But yeah, not OK.

Then again, how long did it take for the medical world to NOT consider homosexuality as a mental health issue?

It is an awful illness. My 2 week of misery only ended yesterday.
It was a bad one this month.

(in other words, big medical institutions are an orthodoxy, and often way behind the times)

@Fluffypersian oh that sounds so familiar. I'm peri menopausal now and everything has just gotten worse. I would also get the whole lot taken out if I could. The triple checking texts and thinking the worst I can totally relate to. It's so much more than 'just' PMT and such a shame that awareness of it is so low. I'd encourage anyone to watch the BBC report that I linked to upthread.

Ok, looks like PMT And there is the problem. It gets dismissed like this, by everyone!

That so few recognise the acronym proves OPs point. It isn't a new one, I was diagnosed back in the 80s. I was extremely lucky, the 5th GP I saw had written an essay on it, once!

I have tried to post about it, I had a very severe form of it. In trying to be honest about just how scary it is I always include having once slapped my now DH when deep in the throes of a depressive/angry episode. Then all responses tell me I am just an abuser making excuses!

So nobody hears the message that for many women there is a remedy, in my case an almost immediate cure for the depression and anger. For most there can be a lessening of symptoms.

If women dismiss it, refuse to listen to women who suffer from it, then what hope is there that the medial profession will listen and understand?

For anyone who is interested: I underwent a very sudden character change. I was almost unable to cope. Went to work each day, did my job, came home and zombied out. I had regular angry episodes. All along there was a tiny presence in the back of my head watchng what I was doing, unable to speak or act. Then, about 6 hours before my period began it would clear and I would be my usual self. Period would start and the cycle would start again until, after about 4 days, I would have run out of spoons (as one poster explained).

My now DH eventually dragged me to a 3rd, 4th and 5th GP as he thought I had a brain tumour. The last GP put me on Depo Provera and after 48 hours I was almost completely transformed. No more suicidal thoughts, no more uncontrolled rage, no more zombie living.

Now, 30 years later, off Depo and on my 2nd implant, I have never experienced any of the symptoms again. Have read and rethink the glib rebuttals!

www.mind.org.uk/information-support/types-of-mental-health-problems/premenstrual-dysphoric-disorder-pmdd/about-pmdd/

So, it has taken 20 years of research for WHO to be able to have added this, in May 2019, to the list of classification of diseases. It is essentially a mental illness but doctors across many disciplines will now be trained about it.

That is good news. Shocking that it takes so long, I suppose, but it does have to be rigorously researched and proven.

www.google.com/amp/s/iapmd.org/position-statements-1/2019/6/11/world-health-organization-adds-premenstrual-dysphoric-disorder-pmdd-into-the-icd-11%3fformat=amp

There are other illnesses that plenty of GPs are still dismissive of:
ME
Fibromyalgia

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.

The WHO included PMDD in its 11th revision of classified diseases last year. It's been included in the DSM for some years.

It's an horrendous condition which isn't talked about because society as large is so squeamish about talking about women's periods and trivialises women's health problems.

Agree with FluffyPersian that SSRIs can be life changinging.