PMDD Ruining my Life

[calista12]

Hi all,

Posting on here out of desperation really, and in the hope I'll find other people who are willing to share their stories of PMDD. It'd be great to find someone to talk to.

After years and years of suffering with mental ill health and almost pursuing a diagnosis for bipolar disorder, I really do believe I suffer from PMDD. I think I've had it for many years, but it's become absolutely unbearable since the birth of my last child 17 months ago. Symptoms include indescribably intense anxiety - worry to the point that I can't sit still, can't sleep, can't eat -; a complete paucity of happiness; intense anger; extreme worry about not being liked or of doing things wrong; and suicidal thoughts. Once my period begins, these feelings quickly dissipate, and I feel 'normal' again.

It's ruining my marriage - my husband has left me over it twice already since September - and it's jeopardising my career. During these two weeks, I have such anxiety in a morning I'm shaking before work, terrified of going, and I can't put make-up on. I can't function. If I make a mistake, I'm a wreck, worrying I'll get sacked, and the anxiety has the ironic impact of stopping me from working well, so mistakes become more likely. I spend my time avoiding people and having panic attacks and crying in the toilets. It's like I'm trapped in my own head and can't get out. I'm better at home, but not much so; the days feel like they're going on for years. I haven't told anybody at work what I think is wrong with me (I have a doctor's appt next month - soonest I could get after saying I thought I was having a mental health crisis) and I'm so scared I'm going to end up ruining my life with this. It's honestly like I am two different people. I work in a very people-orientated job where I can't afford to not be myself.

I've been googling treatment and apparently it's just SSRIs and birth control pills, but I've not done very well with either in the past so I'm not sure how effective they'd be. I'm at the point now where I would gladly have a hysterectomy if it meant I could be more mentally stable and not feel like this, but I'm 32, and don't think the NHS would do something so extreme.

Is this just how it is?

Have you considered a Mirena coil? It would hopefully stop your periods, and it’s a low and continuous dose of hormone. I think you’d find it better than the pill.
I also found it helped my peri menopause rage.

I could have written your op for many years. In the end I aged out of struggling with the pill. Once I could not have periods it was life changing. Keeping pushing for medical help and keep trying, telling your GP just how serious this is for you. If they don't refer you, write them a letter repeating what you have said here.

I was exactly the same for years. I thought I needed to be sectioned. My husband also left. The coil changed my life. I became a different person. Please speak to your doctor about getting help.

You can also take a look at nutritional interventions. Take a look at Georgia Ede speaking at the PHC, and at the Metabolic Mind channel on YouTube.
It is not hopeless.
Best of luck.

This was me for a while, even got put on lithium for rapid cycling bipolar disorder (which didn't work). Purely by coincidence I got a nexplanon implant and things improved immensely. I wasn't fully fixed but I was improved enough to be able to manage the residual anxiety and frustration, and it wasn't every month. I don't think the implant is a standard treatment, but it certainly worked for me. Good luck OP, it's a horrible way to feel so really hope you find something that works for you.

I needed vitamin D for a physical problem caused by low vit D and my PMDD has downgraded to bog standard PMS since. No idea if it was the cause or not but I have since read that low vitamin D can cause anxiety. My GP recommended an under the tongue spray as that helps absorption

I will also say Mirena coil. I didn't recognise I had it until I got so much worse as I got to perimenopause. My husband also left and I thought my marriage was over until I got myself stable on HRT. We were able to look back and see that the times I had previously been most stable were when I had a Mirena or on the pill and I could see my 'depression' had been cyclical, starting from puberty, great while on the pill/Mirena or pregnant, worse after birth, worst of all in my 40s, when it seemed to take over the whole month.
Does your husband know what you think is wrong? Please do try to talk with him, so he understands better what is going on. Mine was so hurt by thinking I hated him, no idea I was unwell etc. It has taken us a long time to get back on track. He would have found it so much easier to manage his own reactions if there had been a clear explanation for mine.

I’m so sorry OP, this sounds incredibly hard. My advice, if you can afford it, is to go private and see an (ideally female) expert in the field of menstrual health. You need top top notch medical advice, as there ARE effective treatments for PMDD, but I wouldn’t trust all GPs to be knowledgeable enough about them sadly. Good luck!

A mirena coil and supplementing with vitamin D and magnesium glycinate has really helped things for me. I also have a late diagnosis of ADHD which I think plays havoc with my hormones as all my cognitive difficulties and exec function struggles get worse at that time of the month as well.

Thank you everyone for taking the time to read and answer; it's uplifting to know I'm not alone in this.
I am a little worried about having the coil fitted, only because hormonal contraception has, in the past, made my moods worse rather than better. I haven't been on any hormonal contraception since I was eighteen though so maybe it's worth trying something again? I'm just a little worried about the semi-permanence of the coil; you have to have it in for quite a few years after getting it inserted, don't you?

I have spoken to my husband and he agrees there's something wrong and wants to be supportive, but obviously it takes its toll on him being with someone who can't function like a normal person for 2 weeks out of every month. I've noticed it's worse when I'm stressed. I'm really unhappy at my current job and waiting to start a new one but I have another six weeks left of a 3 months' notice and I think the stress of knowing I have to keep going in somewhere I hate is perhaps making it even worse currently. My period is also five days late, so the symptoms are dragging on without any relief.

I'm nervous about the GP appointment. It's with a male (it was another two months for a female doctor) and a blog post written by a GP on a site that's supposedly about helping sufferers of extreme PMS has made me even more worried. I think it was written to be comforting, but she basically talks about how if the GP has had a bad day with serious issues, they aren't going to care about a woman moaning about PMS.
Approaching your GP | NAPS – National Association for Premenstrual Syndromes

Hi ladies. I think I’ve found this post at the right time….
I can completely sympathise with you all. PMDD is horrendous and very little research done on it. I am 33years old with 2 children and if I was financially able, I would pay private for a hysterectomy. Long story short, I had a breakdown in July 2023 due to medications(not related to this) and due to the death of my grandma. Suicidal ideas, feeling a burden, worthless, the list goes on. I admitted myself into my local mental health hospital as I knew I would see another day otherwise. Being away from my husband and children for a full 2 week was a big decision I needed to make but I knew my kids deserved “a better version of me”. I was put on sertraline, had CBT for 9months and really thought I was on the right path. I have always had problems with my periods but things took a dramatic nose dive and I was diagnosed with PMDD. My sertraline dose got upped to 150mg and I had the mirena coil fitted in July last year…. Not for me unfortunately 😞 My mood felt more stable but my periods were getting long and longer and more painful. I have now booked an appointment to get it removed in March. I had an appointment with my psychiatrist yesterday for a review. Which I told her the panic attacks and low mood seem to be creeping back up. She has now upped my sertraline to 200mg and has advised me to go private to a gynaecologist and get a consultation done. I am on the nhs waiting list for gynae but the waiting list in our area in 16months. I’m terrified of going that long feeling like this as I feel my mood is starting to dip again 😞 The psychiatrist has prescribed me a lose dose of diazepam (2mg) to take daily from now. I was originally taking it the week before my period and the week of, for 14 days total. But now I’m bleeding soo much almost every week, I’m not even having a chance to take it. It’s horrible. A hysterectomy is what everyone’s mentioning to me. They already said t they are reluctant due to my age but myself and my husband have two wonderful children and also experienced 2 losses. I am beyond blessed with my family and I would never ever consider having anymore. Im sending love and hugs to all you ladies. Guys get off to easy! X

I haven't been on any hormonal contraception since I was eighteen though so maybe it's worth trying something again? I'm just a little worried about the semi-permanence of the coil; you have to have it in for quite a few years after getting it inserted, don't you?

Yes, I would say it is worth trying again. You don't have to have it for years. If it hasn't started helping after about 6 months, it probably isn't going to and you could get it removed.

I have spoken to my husband and he agrees there's something wrong and wants to be supportive, but obviously it takes its toll on him being with someone who can't function like a normal person for 2 weeks out of every month. I've noticed it's worse when I'm stressed.

Mine was definitely worse when I was stressed. And as I approached perimenopause, it became all month. It is good you are moving job, hopefully that will help. Would your husband go to the GP with you? Sometimes being in the discussion can help people understand and better support each other.

Sorry to hear you're having such a difficult time.

Just wanted to say that some women feel much worse with the Mirena (I did) - some women have a rare sensitivity to progesterone. I ended up having a total hysterectomy at 45 in order to avoid progesterone completely. My mood stabilised after this (I take only oestrogen).

Good luck getting help.