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.

Well OP couldn't be bothered to explain properly in the heading and opening post so I couldn't be bothered commenting. Really annoying
But you did comment and rudely too.
If you had read the thread or even the OP's posts you'd get the drift.
Many title's use acronyms.

To those saying it's like PMT, makes you a bit grumpy..

My friend had it. Every month she would go pretty much psychotic. Screaming at her husband, demanding a divorce. She said she could hear herself doing it and didn't mean it, but couldn't help herself. They investigated bi-polar and various other mental health conditions until they realised the pattern of when these incidents occurred.

Her condition was so bad she was given a hysterectomy on the NHS at the age of 35.

So no, not like PMT.

@welcometohell I found the worst of my period side effects like the period poos from hell, cramps etc improved as well as my mood. My cycle also became on the dot regular - it was textbook cycle.

It’s gone entirely to hell in lockdown though but my mood has stayed very stable.

I do still have ‘moods‘ but they are much less intense. I occasionally get a very bleak day before my period starts that lands out of the blue but now I know it’s not my real feelings, it’s the hormone change twanging on the wrong receptors in my brain and it will pass in a few hours.

I am a walking cliche but I found yoga really good as a way of getting out of my head and into my body.

But even when I don’t do yoga or exercise, I still take the vitamins and I stay pretty level.

@Starsabove1 the info you provided has been very helpful - thanks. Going to look into that and give it a try as all interventions so far don’t cut it or make it worse or have hellish side effects.

@Starsabove1 and @boltzmannbrains thank you for taking the time to post about supplements. I will speak to dd - possibly after the gcse results day!

You’re welcome @Wishingforanotherlife - thank you for starting this thread. As a few posters have shown, a lack of knowledge or dismissal of PMDD as ‘just PMT’ is still common but I hope anyone posting or reading who thinks they or someone they love has PMDD will know they aren’t alone, that it’s (slowly) being taken more seriously now and there are ways through it.

@StillDumDeDumming good luck to you and your DD!

In 1986 and after an argument with my husband I realised my suicide thought AND attempts were all a week before my period. I had other extreme feelings and thoughts that I believed were triggered by my abusive husband. I had spent 6 months documenting everything and although most could be attributed to my husband's words and actions I knew it was more.

Pre-internet, I spent many hours in th reference library and found out about PMDD and visited my GP. I will never forget his exact response of "You are one of the cows poor men have to live with.

It was impossible to change GP so I made up a gynaecological problem just to get access to someone to discuss it with a consultant. It was a life-changing appointment (I was honest with her about making up a problem and she said that was the saddest thing she had heard about being dismissed). I was put on medication and stayed on that until I I had both ovaries removed in 2013.

There are 13 symptoms and a woman has to display 5 of these to be diagnosed.

I think there is a lot of confusion about statistics here. The last I read about a year ago stated that between 1.8 and 5% and of women suffering PMT have PMDD - not up to 5% of women. I don't know which is right but I doubt it is 20% of women.

PS obvious name change!

Ive reciently started to believe I have developed this since my periods came back after stopping breastfeeding.
Ive been so distressed at times ive sat with a knife pressed to my wrist.

Its not "just being a bit grumpy" its like a lead weight lands ontop of me and starts getting heavier in the 10 days before im due on. Im paranoid, anxious, stressed. A wrong word from my parter will put me into a massive tail spin and i catastrophise everything. Then the day my period starts its like Im suddenly fine, the weight lifts, i can concentrate and be productive again.

I was also very low throughout my pregnancy.

Im trying to build myself up to go to the drs about it but cant quite face it yet. Have started taking some supliments though to see if it improves.

@FraughtwithGin maybe Chronic Unimaginative Nasty Trollitis? You certainly seem to have a case of it.

I think there is a lot of confusion about statistics here. The last I read about a year ago stated that between 1.8 and 5% and of women suffering PMT have PMDD - not up to 5% of women. I don't know which is right but I doubt it is 20% of women.

Phew, now there are some accurate numbers.

Op, you are not wrong, the syndrome deserved to be known about much better, but it is not quite as common as you assert.

I have had awful PMS forever. I suspect mine could fall into the PMDD category although I have thankfully never been suicidal. I have wished to die but never actually planned it.

I don't like the term PMT, I prefer PMS as for me there are about a dozen symptoms. I feel that this condition has had a massive negative impact on my working and personal life. Approaching menopause it has worsened every year to the point where I was getting 10-14 days of feeling possessed (best way I can describe it - not myself at all) followed by 5 days of bleeding, a few days of feeling like myself before it all started again. Two-thirds of the month I was suffering with one thing or another.

PMS is widely misunderstood and PMDD even more so. Hardly surprising when you think that there is so much stigma and prudishness attached to women's hormonal health. Just look at the way menopausal women try to hide their symptoms at work and live a normal productive life while grappling with some pretty major symptoms! We're talking about half the population!

I'm relieved to say I recently had a total hysterectomy and I will now take oestrogen indefinitely but I can avoid progesterone now forever. It feels completely life-changing (and cheaper than divorcing my wonderful husband, who really suffers from my awful depression, anxiety and rage for half the month, even though he has never blamed me for it.)

For what it's worth I am totally open about the reasons for my hysterectomy as I feel like it shouldn't be taboo and raising awareness could help someone.

I now just cross my fingers my DD will be spared all this shit!

@FraughtwithGin I have spent my adult life at a healthy weight, regularly exercising, not drinking or smoking, taking all the recommended supplements.... I challenge anyone to have a better lifestyle in fact. It did not seem to help (or maybe I'd have actually committed suicide if I didn't have such a healthy lifestyle?)

Probably exacerbated by being overweight and stuffing yourself with highly processed sludge. ODFOD!

Judgemental tripe! And utterly bereft of any biological knowledge!

Phew, now there are some accurate numbers. The last meta analysis I read said that the range was 2 - 20%*, aka nobody actually know as the terms are not acknowledged let alone formalised.

• It did muddy its waters with PMDD being a subset of PMS in some studies

WomensHealthUS (government stats) has 3 - 8%

NHS 1 in 20

So I'd guess at 5% being the 'go to' figure, the figure you could expect to find in any cohort!

I had it. It took so long to get help as for a long time it was just dismissed as PMT or "womens troubles" and I'd just have to man up and get on with things as other women do. It wasn't like what other women get.

My cycle was about 24 days long. My actual period was horrendous with severe bleeding and excruciating cramps. A thick sanitary pad would need changing every two hours. I often leaked through onto my clothing, slept wrapped in a puppy training pad and I was scared to sit on other people's chairs in case I left a mess.

I'd get over the period and have a normal few days where I'd try and put right what went wrong in the previous cycle.

I'd ovulate and the mental health would kick in along with light bleeding/spotting. It's like an egg pops out and someone presses a self destruct button. I'd plunge into darkness and really struggle in day to day life. I'd go through the motions with work and looking after my children, but I was just a zombie and found no pleasure in life. Housework was neglected, I couldn't be arsed to exercise and I binge ate crap. I was convinced everyone hated me, I was a waste of space and I'd be better off dead. I frequently thought about different ways I could kill myself.

The did a womb ablation which is basically microwaving the lining of your womb off. That helped with the heavy bleeding but I was still getting the other issues caused by the hormones. They didn't manage to get all of the lining, so I still had some bleeding/spotting most days and I still got horrendous period cramps.

I tried several ordinary contraceptive pills but none helped. The mini pill was horrendous as I had the dark thoughts all of the time with no let up. The depo proved the same. It was thought I was reacting to the progesterone so I was advised to have a mirena coil as apparently less progesterone ends up in your bloodstream. Didn't work and was told I had to keep it for five years as they cost a lot to the NHS!

After a few months, I ended up breaking down in the GP surgery begging her to take it out as I felt like ripping it out myself.

It was decided at this point that I'd become highly sensitive to progesterone and hormonal treatments were no good. We moved onto SSRI's and over a period of time, I trialled three but I didn't get on with any of them. Mirtazapine made me incredibly sleepy. I ended up needing to sleep for 12 hours a night and still felt groggy the next morning and unsafe to drive. Sertraline gave me extreme headaches that made me feel sick and need to lay down. Prozac gave me a rare skin reaction. Ended up covered in tiny itches blisters. It was decided they were not the answer.

My NHS trust just said there was nothing more they could do and I should learn to live with it. I found out about Zoladex injections. My trust wouldn't do them, so I found another area who did do them and asked to be referred there.

They agreed to the injections. It's hormones that shut down your ovaries, so you end up in chemical menopause. They have a number of severe side effects though, so you're only allowed them for six months at a time, then have to give your body six months to recover.

So I had my six and it was six months of utter bliss! No periods and everything was back to normal. Managed to get back on top of work, housework, got back into the gym. Felt the best I'd felt in years.

Six months ended, my ovaries fired back into life and the darkness came back again with a vengence.

Consultant said I had the option of six months on and six months off for the next 15 years or so until I hit natural menopause but that would be half a year happy and half a year in a dark place. Or I could have my ovaries removed. I decided to go for the ovary removal.

After that the menopause syptoms kicked in (as I knew they would). It's worse this way as normally your hormones would tail off so get gradually get eased into menopause. With surgery, one day you have high levels of hormones, then suddenly they've gone, so it knocks you for six. Went to the GP to get some HRT and was shocked to find that because I still had a uterus, I needed combined HRT. I really didn't want progesterone again but was told I couldn't have oestrogen only HRT as that would cause issues with my defunct womb. I was prescribed oral tablets.

I went through a cycle of several types of oral tablets but none agreed with me. I went back to the dark thoughts all of the time. I also started with the bleeding/spotting again.

I was referred back to the consultant who said I could try oestrogen patches on all of the time and just add the progesterone in pessary form for half the cycle. I tried that but I ended up back in the place I was in before where I was happy when I was on just the oestrogen, but as soon as I started taking the progesterone pessaries I was plunged back into darkness.

I went back and was told I would just have to live with that as there was nothing more that could be done.

I then found a specialist and asked for a referral. He was absolutely lovely and fully understood everything I'd been through. He was at a loss why only my ovaries were taken and said straight away that I needed a full hysterectomy to eliminate the need for progesterone.

I had that done and I've never regretted it. I'm on oestrogen only patches ongoing now and I feel normal. No more darkness, no more cramps, I'm much happier and I can actually function and do what I need to do. It's like I have my life back.

So yes, it's a bit more than just a bad bit of PMT.

Wow @YorkshirePuddingsGreatestFan, that’s an ordeal. I’m glad you’re in a good place now but holy hell, what you’ve been through is tough.

Not being able to take HRT is a real concern for me. I knows it progesterone that sends me into the pits and as I have all my plumbing still, I’m guessing I’d be offered combined. 😑

PMT is to PMDD as morning sickness is to hyperemesis is a good analogy. People are being disingenuous or deliberately obtuse saying oh its just pmt.

Mine was only cured by a hysterectomy. In the uk it was never called pmdd, I believe that was an American term at the time, but it was years ago whe I was searching mine.

I had a young GP who dismissed it all then I went back and to be fair to him he had read up all about and instantly referred me to a gynaecologist.

The first gynae was great. I'd kept a diary, both physical and emotional symptoms. I took my dh with me.who explained how I was perfectly normal 2 weeks of the month and utter psycho for the other 2. He started me on an injection that stopped periods to see if I improved. I did...

BUT, when i was due for the 2nd injection that gynaecologist was away and the one on duty "didnt agree with all that..." and tried to make out i had relationships problems or was depressed. I did but for only 2 weeks of the month!

Anyway a long story short the hysterectomy sorted it. I understand other treatments are available now and urge you to keep fighting for yours op. Good luck xx

Ahh @FraughtwithGin, you knobber 😂😂

@YorkshirePuddingsGreatestFan that you had to endure all that is what makes me angry and sad. How many other women are out there with similar stories that have had to jump through so many hoops.

I’ve been telling my GP for years that I just want all my woman bits out, uterus, ovaries the lot. I have no need for them now. It’s like I instinctively know it’s the only thing that will make a difference but I never feel like I’m being taken seriously

@YorkshirePuddingsGreatestFan I'm so shocked they initially removed ovaries and had to go back later to remove uterus! That is terrible practice and you must feel so messed around. I'm glad you finally got the outcome you needed. I have had total hysterectomy and will also take oestrogen gel indefinitely.

Progesterone is like poison for those of us who are intolerant of it. I sincerely hope more research goes into this whole thing.

Oh and like many on this thread I have found GPs very ill-informed about PMS/PMDD - even young women GPs. Menopause also seems to be a bloody mystery to them. Hence the massive over-prescription of ADs for hormone issues

I only felt understood for the first time by a male PMS/menopause specialist at a private London clinic. I could have wept with relief to be taken seriously. I am lucky I had the means to go there, otherwise I don't know where I would be. It cost me hundreds. Taking HRT for two years and carefully adjusting dose and monitoring symptoms enabled us to figure out that progesterone sensitivity was the issue. Hysterectomy was the "last resort" solution and I feel nothing but joy that it's now behind me.

@YorkshirePuddingsGreatestFan I had sensitivity to progesterone too. Had the hysterectomy and now use oestrogen patches as my hrt. I was only 38 when I had my hysterectomy.

The zoladex worked for me prior to the op, but they wouldn't let me carry it on after the first 6 months. Hope you get sorted soon too. I also had extremely heavy pai ful periods beforehand and it was only after no more periods I realised how much I had suffered physically and put up with. It was the emotional symptoms and the effect they were having on dh and dc that made me seek help. Such a difficult time but I'm so glad I had the op.

@hippospot I too found Male doctors much more sympathetic than females particularly young ones!

I got prescribed a progesterone only pill once and went crazy on it, totally irrational with rage and then suicidal. My life has been plagued by my hormones.