PMDD - I'm sad it has taken me so long to find out

[pontipinemum]

I was diagnosed with PMDD last week. I am feeling quite upset with all the "lost time" when I didn't know.

I was diagnosed with ADHD last year at 37. That was interesting but while it has lead to a better understanding of myself in general I don't get a knot in my stomach over it.

I took the pill until I was 31 when I stopped, what I know now to be PMDD took over rapidly and with a vengeance. My life felt so turbulent and I made some terrible decisions. And behaved in ways I am ashamed of (binge drinking to cope) and I wasn't nice.

I eventually got pregnant with DC1. For the next 4 years I was largely pregnant or breastfeeding. So in the main part i was level and stable in myself. Bar a few months when I can see clearly now PMDD raised it's head. Such as the times I miscarried etc.

After DC2 I sought therapy for my mental health, I had suffered extremely badly with PPD. I was in such a good place for nearly 18 months with therapy. Developing good self care.

Weaned and boom. This beast came out. I honestly felt like I was going insane. The turmoil in my head and my behaviour were not acceptable

It was DH that said I needed the doc because the "bad" me only came out for a few days about a week before my period.

She said I have PMDD I had never even heard of it. But the more I read about it the more it all fits. PMDD along with ADHD was a plummet. I'd be fine most the time then out of "no where" I would honestly feel like I was loosing my mind

AIBU to feel a sense of loss that it took me 6 years to figure this out?

What's PMDD?

Have a look on reddit pmdd threads. Have a look at supplementing calcium, and using antihistamines! So effective for many women rather than experimenting with further hormones x

Pre menstrual dysphoric disorder.

MIND has good info on it as it's classed as a mental health disorder

I also have PMDD. I had a very rough time as a teenager with eating disorders and mood issues which I now realise with PMDD. As a student I constantly thought I was about to get depression but that statement on depression diagnostic questionnaires about feeling this way for over 2 weeks always stumped me because it was pretty much exactly two weeks!

It was then disguised for years by contraception and I felt so great, so normal, was sure whatever it had been was cured! Then as soon as I came off, thinking about having kids, it hit so hard every month. Absolutely horrendous and I feel so sorry for my younger self that she went through that every month with no explanation.

I was diagnosed with PMDD around 8 years ago and it really is an adjustment. I found that it got worse with age and particularly after children. In my house it’s called the ‘bitch switch’! 2 weeks before period my whole body feels like it’s on fire and migraines spike but the mental health is the worst part.

I have no idea what my trigger is but any act or comment can nudge my bitch switch and I completely disassociate from life. It’s the weirdest and scariest thing ever. I look at my family and know that I love them but beyond making sure they have their basic needs met, I feel very little attachment to them. I walk around in a blur feeling absolutely nothing for anything other than an all consuming need for utter silence. The moment my period starts it’s like a tube of light appears and my emotions switch back on. I have recently lost a lot of weight and so far I am 3 months without an episode!!

I started on contraceptive when I was 16 so it was pretty much masked my whole life.

My periods started age 12, but my childhood was filled with abuse, neglect and abandonment. I hid all those things from people so this was another thing to hide. But I can see now so much of my behaviour was linked to this.

I am mainly sad for 31 year old me. I came off the pill to TTC with my new husband and some sort of switch was flipped. We thought it was trauma/ stress and too much alcohol. Those were all true too but I really wish I knew this very important part.

That sounds awful. I know I am being very nosey, but what have you tried to help?

My GP is going to trial me on back to back pill. She said if that doesn't work we will look at other things, maybe HRT.

i have never been able to take the pill due to migraines and the artificial hormones triggering episodes. The doctor wanted to put me on anti depressants for 2 weeks a month to see if this can control it.

for me personally, I make sure my entire family fully understand the condition and realise I’m not personally attacking them. I’ve researched it a lot and found that when I shut down its my minds way of protecting me when it all gets too much. I have a level of acceptance now and I’m also looking forward to menopause 🤣

@wintercherry you genuinely have my sympathies. I have had 4 cycles of this since weaning DS. They have been horrendous. I really became a different person to who I normally am and how I felt scared me a lot.

I am still on anti depressants from my post partem depression. They don't seem to stop this for me. But I am really hoping that with the pill they will.

I am hoping to raise awareness among my friends/ family/ anyone who will listen to me! I can only imagine how many girls and women feel this and don't know what it is.

Premenstrual Dysphoric Disorder - in essence it is regular PMS but on an absolute rocket!!! For me it is so intense, like scary intense. I felt like I was going insane, that my head was going to explode, that I needed to escape my own brain.

If PMS is a dull rainy day that you want over but you can do things to alleviate the annoyance. PMDD is a hurricane, that is tearing up everything in it's path. You are tied to the floor. So matter what you want to do there is no getting away from it. It is going to consume you.

Until the sun - your period - comes out and you get back to 'you'

Can I ask what the doctor did to diagnose you with this?
my DD19 has all of the symptoms of PMDD but went to the doctors and they were quite dismissive towards her

This is not surprising, especially at 19. No fault of you, your daughter or being 19 but a complete ignorance to the condition.

Get her to keep a diary of how how she feels and intrusive any thoughts (or beliefs). Include the impact of the thoughts and feelings (social isolation, absences, harm to herself, behaviour she regretted when the feeling passed). At the same time, get her a therapist/counsellor to talk through what she’s experiencing. The therapist can write a supporting letter or referral for you. Go back to the GP (possibly see a different one at the practice?) and ask again.

I got a page per week view A5 and it is so striking to see the pattern across a month.

This post has made me cry. I was diagnosed 10 years ago at 40 and put on low dose citalopram, which was a godsend. I was raging and losing control twice a month and yes, probably self-medicating with alcohol. I am still wracked with guilt with how volatile and awful I could be.

I think the trigger is fluctuating hormone levels? So peri menopause is really hard work now as the PMDD hasn't gone away. I thought HRT would help, but I can never seem to get the levels right and am likely progesterone intolerant.

I also think my DD is showing signs of it. She has started on the pill which has calmed things down dramatically.

I am so sorry this affects so many of us and is do poorly understood.

I would suggest that your daughter keeps a diary for the next 6 months to show consistency. Each month will be different symptoms and it is good to show the ranges and be very honest with how it effects her.

I struggle with productivity and find doing my job during this period to be awful. Again I have no attachment to complete tasks and this causes more negative emotions of failure. Advise her to be honest with herself and keep track. I’ve sadly also found the ChatGPT helps me feel sane by walking me through why I’m feeling this way and ways in which to manage myself. I hope she gets some answers

I had PMDD

It’s really common if you have ADHD Sensitive soles that we are.

Seek out a decent endocrinologist. They are the ones who can offer effective treatments.

I had written down my experience for the last three months and on what dates exactly things happened. My husband was the one to spot the pattern and had actually kept a note in his phone!

I was also able to go back over the last 20 years and spot when I was experiencing. E.G on the contraceptive pill I was fine - off to conceive PMDD - pregnant/ breastfeeding fine - baby weaned = PMDD exploded! My mood was so steady through breastfeed for 15 months that's why it was such a stark clear sign for me that it was PMDD. I had been truly looking after my MH, physical health, diet, therapy all of those things. The only thing that changed was I got my period back.

I will say I have an amazing GP, truly amazing. She knows me and my whole family very well. So that was an enormous help.

I remember saying it to a different GP when things started when I was a teen and then again at 31 and they were a bit like 'sure it's your cycle' eye roll. I was told I had BPD. That if I gave up alcohol it would stop (I did, it didn't). I just really thought that there was something very wrong with me on a personal level. That if I just tried harder I could 'fix' it.

I wouldn't tell someone having a migraine to just try harder not to have it. But that is what I expected to do myself.

It can absolutely be treated and managed for many women, but only once you know what you are dealing with. For now I have every hope the pill will get me back onto an even kilter.

This is what heading Chat GPT thinks would help a doctor diagnose she will need 2-3 months:

Date:
Cycle Day:
Mood (1–10):
Anxiety (1–10):
Irritability (1–10):
Energy:
Physical symptoms:
Impact on daily life:
Sleep:
Medication:
Notes:

“Notes” section for things like:

• “Felt suddenly hopeless”
• “Couldn’t tolerate noise”
• “Argued with partner over minor issue”
• “Symptoms lifted within 24h of period starting”

Thank you everyone, it’s really helpful to hear that there is some understanding of it.
She’s having counselling for attachment trauma and it was the counsellor that suggested the possibility of PMDD. She has had three significant attempts to take her own life resulting in hospitalisation, all coinciding with her hormone cycle.
GP basically told her it was PMS and quite common and to go for a walk if she feels low…