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 first time I sought help from my GP was after a weekend away with the family. I was so down and narky. I was accusing DH of saying things he hadn't said. Lying at night in my bed I remember thinking to myself, please don't let me wake up the next day, it'll all be better if I just don't exist. The next day my period arrived and my mood lifted completely.

Thing is, I can't recall feeling so bad prior to having children. Sure I must've had my moments but when you're not looking for something you don't always spot it. I had suffered very debilitating migraines but was just prescribed the pill and to take it indefinitely so I never had a pill free week.

Once I had kids though, now I can look back and realise that it must've turbo boosted my hormones, ergo if PMDD is more about the reaction to the change in hormones, then little fucking wonder women suffer PND. But hey we just have to get on with it don't we, so we mask it for fear of the stigma attached and the judgment of being a bad mother.
That GP visit aged around 45 confirmed that I was perimenopausal. As I'd no doubt had symptoms leading up to that weird weekend, I probably started peri much earlier.

My DD hit puberty early and was having a horrendous time. She was eventually prescribed the mini pill and has been ok but she still has some mood swings which I'm sure are still hormone related. Even though she's 16 I'm going to suggest she keeps a diary of moods and symptoms just in case she ever has to go to the GP herself with similar anytime in the future.

More research and education needs to be done on this. I could be so much farther down the treatment line if I'd been tracking my moods/symptoms or even knew that it was beneficial to do so.

Thanks again lovelies for the extremely useful information and signposting. You've probably done more good than the host of medics who has seen me over the years but seem unable to join up the fucking dots when reading someone's file.

I know I’m late to the party but I hope my reply is seen by whoever needs to see it.

My story is long so I will cut to the chase first and then add the details below.

I found a form of therapy that is curing the PMDD. It’s called RTT and the therapist I use has a specific PMDD program she developed because she too struggled with PMDD and realised her RTT training was relieving PMDD. Message me if you want her details.

My story...
I’m 34 and had PMDD for 12 years. I’m 5’6” and 9 stone. Athletic with a clean diet. No caffeine and no alcohol when PMDD started at age 22 and minimal of both since but cutting it out never helped. Always did and still do take daily vitamins and probiotics. Low stress level.

When PMDD fist started for me it was mild. My cycle went from 28 days to 33 days. The 7 days before my flow started, I would have painful swollen breasts. I would go from a D to a full D.

At that point I tried the vitamin route, the progesterone cream therapy route, and eliminated all ‘xenoestrogens’ from my lifestyle. All in all I did leaky gut diet protocol, low carb, Keto, antihistamine, pitta, and blood type diet. I tried massage, acupuncture, herbs, meditation, psychotherapy, Emotion Code, and The Journey.

Throughout my 20’s the breast issues worsened and were taking up 2 weeks of my month.

I went to doctors several times. Each times I was told I had fibrocystic breasts and my pms was normal and I should take supplements and birth control (such bullshit and it never worked). Birth control always made everything worse for me. Also all of my hormone tests always come back normal...for years.

Then I started having emotional issues such as rage and feeling out of control of my life and dissatisfaction in relationships, my work, and friendships. At this point I had not made the link to my cycle. I also had issues with calling into work and feeling like I just couldn’t face the day and my entire life was falling apart. Again, hadn’t connected it to my cycle yet. I knew some times I felt like ‘myself’ and I could do anything and then suddenly my world was falling apart. Then I had to put the pieces back together. I had become 2 different people throughout the month.

Fast forward to age 32 and everything got MUCH, MUCH worse. This is when I realised I had PMDD, after trying to get help for my ‘PMS’ for 10 years. I found myself living in the U.K. (I’m a US expat). I was unable to function for 2 weeks out of the month. I laid in bed while my husband did everything for us. I gave an NHS doctor a try and she completely failed. I got the typical treatment of ‘you are young healthy and fit, what do you possibly have to be upset about? You can’t handle a bit of swollen breasts and low mood?’

My symptoms (the short list)

Breasts swelling from 32 D to over 32DD
Extreme breast pain and lumps
Sudden weight gain of the same half a stone each month that I lost within 24 hr of my flow starting
Sciatica
Joint pain
Debilitating fatigue
General feeling of heaviness throughout my body
Heart palpitations
Shortness of breath
Faintness (and passing out at times)
Mood swings
Crying
Self critical thoughts/self hatred
Body dysmorphia/ feeling absolutely hideous
Ruminating on the past
Anxiety
Not wanting to be touched by my husband in any way shape or form
Wanting to flee from my life
Feeling unloved and unloveable
Avoiding my phone, texts, emails, social media
Avoiding any type of appointment, obligation, doctor appointment, hair, personal training, etc, even if it’s someone I typically enjoy
Avoiding the mirror and personal hygiene
Constipation
Gas
Lack of motivation
Hopelessness
Brain fog
Inability to remember words or string a sentence together
No desire to even speak at all at times
Screaming crying fits of rage
My clothes wouldn’t fit and I would have a breakdown just trying to get dressed for the day and FORGET about leaving the house

During these times I could go from being able to run 3k with no problem and then during PMDD I couldn’t walk to my bathroom without being out of breath let alone perform any other type of physical activity beyond that and the only time I had relief for the breast pain was to lay flat on my back in bed.

Each month I had no idea how I was going to make it through another month.

RTT is saving my life. If you are suffering with PMDD please know that there is hope.

It’s horrific. Got to the stage I just couldn’t function for two weeks of my cycle every single month. Had a my uterus and ovaries removed. Only got taken seriously by going private.

I suffer from this and believe me it goes beyond pmt

A week to ten days before my anger and irritability is off the scale. My anxiety and suicidal thoughts are ramped up and I cut myself with knives and scissors most months.

As soon as I come on im ok..till next time

I also get terrible headaches and muscle ache

Anyone who dismisses it as pmt quite frankly doesn't have a clue

And yes I get a lot of the symptoms dawn has shared in her post.