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Has anyone been diagnosed with PMDD?

(40 Posts)
Mrsfrumble Tue 22-Dec-15 04:49:44

... And if so, how are you treating it? Would you mind sharing your experiences with me?

It's taken a while for me to realize what's going on because I don't pay as much attention to my cycle as I should, but the pieces are starting to come together. My period is due in the next week or so, and for want of a more eloquent description, I'm going out of my fucking head!

A mixture of fatigue and lethargy, mixed with sudden bouts of "fight or flight" with no real cause. Dread, hopelessness, head filled with cotton wool. The worst is just losing my shit over minor stuff, especially horrendous when I'm at home with small children all day. Today I lost it with my just 3 YO and shouted and ranted at her while she sobbed, over some regular toddler behaviour (scribbling on a mirror with a crayon). When I wasn't shouting I was letting them watch cartoons all day because I didn't want to be touched or talked to. I love them so much and they deserve better than a mother who turns into a monster every month.

Anyway, where do I go from here? I think I need help! I also have this suspicion that this being a "woman's issue" I might be fobbed off "self-care & vitamins" advice.

LittleHag Wed 23-Dec-15 16:43:38

Yes. Yes. Yes.

I completely identify with what you describe. I always suffered with PMS but a after I turned 40 it started getting so much worse.

Every month I despised my DH and plotted to divorce him. I was snappy with our DCs, and frequently unfairly strict. I hated my Mum and avoided friends. I couldn't be arsed to do anything at all and would often just serve beans on toast for the DCs dinner. I was despondant and felt hopeless inside, and just felt like wasn't worth living?

Does this ring any bells?

Then one month, 2 years ago, the PMDD didn't disappear after my period started. It just stayed and stayed and I was in a really dark place.

My GP suggested trying an AD. I started on Sertraline but it massively increased my anxiety and gave me insomnia for the first time in my life. So I was switched to Amitriptyline because it aids sleep and is quite sedating (but I was still fine at work etc). It helped quite a lot, by making me feel slightly dreamy and detached. I simply was unable to get annoyed by anything much at all. But I gained a stone in weight as it just didn't bother me that my jeans were too tight. It probably made me far too laid back, looking back.

After 7 months I decided to stop taking it and felt fine for the next 3 months. Just mild PMS symptoms and I noticed my periods were much lighter and only lasting 2-3 days.

Then, out of the blue, the PMDD arrived back with a vengence, worse than before. That Xmas was dreadful, I was anxiety ridden, not sleeping, felt nothing for my DH. My GP referred me to a Menopause Clinic (I am in my early 40s).

They diagnosed me with early ovarian failure, which means I was still getting fairly regular periods but my hormones were fluctuating loads, hence the increased PMDD and intense anxiety.

They put me on HRT which didn't help very much. So I tried going back on the BCP (continuously) but with very mixed results. The first brand gave me continual spotting and I was still getting bouts of the PMDD symptoms. The next brand made me feel great for the first 3-4 weeks with no symptoms. But starting the 2nd pack all my symptoms came back and just got worse and worse. On day 10 of 2nd pack I felt so depressed and anxious that I spent the day in tears and scared my poor DH.

In panic I stopped taking them because I think I was reacting to the synthetic progesterone in the BCP which can cause severe depression/anxiety in some women. My long history of PMS and PND means I am very intolerant to progesterone, sadly.

Now I am back to taking HRT again but I am feeling very low. I'm seeing a very good specialist in March, Dr Annie Evans, who treats women for menstrual issues and menopause etc.

The last 2 years of my life have been a living Hell for much of the time and I am desperate to feel well again.

Getyercoat Wed 23-Dec-15 18:19:41

I developed this after severe PND and after I'd come off antidepressants.

I read John Studd's website and went to see a gynaecologist who gave me oestrogen patches to use for 10 days or so a month. It helped massively.
I can't take progrestogen in any form, pill, mini pill, Mirena are all no go for me.
I had a terrible reaction to SSRIs so can't take them again, for now the oestrogen is working. I don't need progestogen too because my periods are still regular.
My gynae said my hormones would not come back as being "off" in blood tests, they're just fluctuating and those fluctuations are causing the mental health problems. Blood tests are pretty useless for this.
As the gynae told me: "the female brain is governed by ovarian hormones and it does not like fluctuations."

LittleHag Wed 23-Dec-15 20:19:25

getyercoat do you only feel like this for a few days each month? Can I ask what dose your patches are?

I don't know if my PMDD had morphed into perimenopause, or whether they are still two separate states. Before HRT, and during it too, I would still get a couple of weeks per month where I would feel pretty much fine. But for the last 4-5 weeks it has all been pretty bad, despite wearing a 50mg patch every day.

mrsbabookaloo Wed 23-Dec-15 20:24:31

Just marking place. I have had some horrendous months recently. Thanks for the info so far.

ladygracie Wed 23-Dec-15 20:25:52

My friend has & she posted a really interesting link on FB

ladygracie Wed 23-Dec-15 20:27:17

Sorry, hadn't finished typing. I was going to say that I can try to find it for you if you like. I can't remember what the exact treatment is but I know that it is now completely under control.

AliveAlone Wed 23-Dec-15 20:27:44

I found some of the information here useful.
I've been on several different SSRIs which were reasonably effective and found cardiovascular exercise helpful too. In the end I went to see a brilliant counsellor who explained that bottled up feelings often come out when we are hormonal. We talked about traumatic stuff from my past that I'd never considered as a cause of my PMDD, it really helped.

Getyercoat Wed 23-Dec-15 21:18:55

littlehag yes it was markedly bad from around day 18 of my cycle. Shockingly so. I could be ok one day and then become an agitated, insomniac, angry, seriously depressed mess. It reminded me of PND at its worst.
I use 50mg patches for a week or so.

Granted, this time of year is always particularly difficult for me. I do think I've struggled with dark days and winter for years. I always feel better in summer.

LittleHag Wed 23-Dec-15 23:55:58

Yes I feel exactly like I did when I had PND too, except thank God I don't have a baby to take care of this time.

Do you mind me asking how old you are? After

Getyercoat Thu 24-Dec-15 10:01:47

I'm 39, this kicked in around two years ago. My mum suffered terribly, at 39 she was diagnosed "bipolar" but completely recovered after menopause and now is firmly of the belief that she wasn't bipolar at all, it was peri and menopause.

All the women in my family have hit peri in late 30s/early 40s.
Have you read Prof Studd's website? I found it was describing me, I know I am not bipolar. It's hormonal fluctuations doing this.

I can manage it better when I exercise regularly and eat very well. This year I've had a lot of external stress and being the darkest time of year I am finding life harder as I haven't had time to take better care of myself.

Getyercoat Thu 24-Dec-15 10:07:12

I forgot to add there, initially my GP gave me Cerazette. I lasted three weeks before thinking I might jump out a window, it was that bad.
After forking out to see a gynae privately he told me progrestogen is clearly not for me right now.
I have a few friends who are suffering and gently suggested to them that they might think about removing their Mirena. Progestogen certainly doesn't suit everyone.

LittleHag Thu 24-Dec-15 14:40:34

OMG we are so similar!. My Mum started suffering with panic attacks and inexplicable anxiety just before she turned 39. She had a nightmare 3 years before having to have a full hysterectomy at 42 due to fibroids. Within a few weeks the panic attacks and anxiety disappeared completely. Funny that?

Early menopause runs in my family too. No female had managed to get to 45 still having periods.

I have read Studd's site and it made me cry a wee bit as I recognised myself immediately in his case studies. Long history of PMS, PND, consistent low mood when I tried the Mirena etc.

I too am paying a small fortune to go and see a private specialist (Annie Evans) in March to see if she can give me my life back.

Have been at a NHS meno clinic and it has been a comedy of errors from start to finish, culminating in the doctor wanting to try me on an HRT with strong Norethisterone in it FFS. Yes, the oldest progesterone in the market, notorious for causing severe PMS symptoms in those sensitive to progesterone.

I might as well take weed killer!

LittleHag Thu 24-Dec-15 14:43:00

Oh and I tried Marvelon for a few weeks recently. Was fine on the first pack, but going into the 2nd pack the depression and anxiety reappeared and just got worse and worse. I just wanted to step in front of a bus, just to stop the misery, and I'm not exaggerating.

Getyercoat Thu 24-Dec-15 17:12:30

littlehag we are so similar. I cried reading Studd's website. It was like a case study of me.
I'm not doing great right now due to various stresses but I definitely feel a difference when I get to the gym a couple of times a week and eat as cleanly as I can, no alcohol etc.
I also had a comedy of errors initially. In fact I think now my PND would have been better served with oestrogen rather than SSRIs which actually landed me in hospital, so severe were the side effects. It seems so many medical professionals are utterly clueless as to the effects of hormones on mood.

Really hope you find some relief come March and your appointment.

LittleHag Thu 24-Dec-15 20:04:46

Yes, I felt Studd was describing me in his case studies too. The relief I felt was enormous, because up until then I genuinely felt I was just having some sort of breakdown and I was terrified I was losing my sanity.

Like you, SSRIs don't seem to work for me. When I had PND they just turned me into a type of robot. In the end I just sent cold turkey off them, after 3 years, and within a few weeks I felt so much better. Human again, with real emotions and sensations. But I had lost the first 3 years of my DCs' life, and I have few memories of those years. But treating PND with ADs was just what happened back then.

I agree that GPs have no idea of how to treat hormonal depression and you might as well get a diagnosis from the milkman.

Mrsfrumble Fri 25-Dec-15 02:53:39

Oh my, I didn't realize I'd had so many replies! I'm so sorry some of you are suffering so terribly.

I had another absolutely shit day after I'd posted. Horrible, intrusive thoughts about harming the children (although I never would). Then yesterday my mood suddenly lifted and I could cope again, and sure enough my period started today.

I'm 37. I always used to feel down - real despair, like I wanted to lie and down on the pavement on the way to work and never get up again - before my period, but never the anxiety or the anger. Then I had the children and had a blissful few years with hardly any periods (smallish age gap and extended breastfeeding). When my periods did return I'd get these awful bouts of nausea at the same points during my cycle. That's gone away now, only to be replaced the dread, rage and horrible, dark thoughts.

I'm going to pull myself and see a doctor in the new year. Would a gynecologist be the best person to speak to? I'm in the USA so I don't need to see a GP first (also, I'm not posting this on Christmas Day! Still evening here, with more presents to wrap.)

colouringinagain Sat 26-Dec-15 21:26:47

Who is this prof studd you speak of?

Another sufferer here, rage and anxiety for 10 days before period on a bad month. Am on Fluoxetine which stops the severe depression and suicidal rights so I guess I'm safer!

borntobequiet Sun 27-Dec-15 09:16:34

My sympathies, I suffered from this for many many years - was diagnosed bipolar, which is common, terrible postnatal illness twice, awful peri menopause somewhat alleviated by HRT. Aware that other members of the family had similar issues - one managed to put an end to what she described as torture by having a hysterectomy with removal of ovaries as well, now stable, happy and getting on with her life properly for the first time. However it wasn't easy and she had to endure poor, patronising and uninformed treatment from a number of health professionals on the way, including prescription for progesterone which is literally poison to her - if I hadn't known better I'd have thought she'd overdosed on tranquilizers. (Tbh GP did his best to be helpful.). This condition, which is so destructive, is ridiculously low profile. Agree that Prof Studd's website immensely helpful, recommend a read. But you may find it difficult to access advice from similarly minded clinicians.

SteamPunkGoth Sun 27-Dec-15 09:20:55

My goodness. I've never heard of this. It came up in active convos. Me to a tee. I'm amazed if m honest. Going to see the gp after the festive season.

LittleHag Sun 27-Dec-15 12:53:33

Google Prof. Studd and you will find his website, which is incredibly informative.

borntobequiet it runs in my family too. But you only recognise it once you know what to look for IYSWIM?

My Mum recalls how her mother used to have crying jags which lasted for days each month, and would also threaten to throw herself in the local canal once a month too. Suspicious?

And I can rsemember my own Mum getting really hyper and almost manic on a.
a regular (monthly?) basis. She'd act really silly, put on daft voices, chase us round the house with a feather duster whilst giggling helplessly. Then would completely calm down after a few hours, we all called it Mum's Mad Hour. Then she suddenly started suffering with severe anxiety in her late 30s. No reason for it really. Then the anxiety miraculously disappeared within a few days of her hysterectomy at 43, for fibroids.

I am 2 years into perimenopause but it could just as easily be PMDD except for me being in my mid 40s now. I am utterly sick of it all and am desperate to go through the menopause so that it can all calm down.

AgentCooper Sun 27-Dec-15 13:02:22

I wonder about this too. I have a history of anxiety but it was always the exception, not the rule. It has been really bad lately. I've been bleeding for 3 months now and I've just turned 30. My anxiety seems to be set off by the bleeding and it's certainly much, much worse when I'm bleeding but the Dr isn't interested. She thinks the anxiety is causing the bleeding but it never has done before. I'm making an appointment at the reproductive health clinic in the new year.

LittleHag Sun 27-Dec-15 13:22:01

How can anxiety cause the bleeding FFS? Some GPs really don't have a clue.

SuperFlyHigh Sun 27-Dec-15 13:26:52

I've had this too and mostly not treated (one GP helpfully suggested Prozac no thanks!)

What I'd also suggest as it can run hand in hand is getting your thyroid levels tested, mine is underactive and after 2 years of medication and blood tests am on right level, but it can cause mood swings, lethargy etc.

And yes severe PMS can run in family though not with my DM and her DM but my DGD's DM, my DGGM.

SuperFlyHigh Sun 27-Dec-15 13:29:00

LittleHag marvelon and other BCP don't help PMS, try to find books by Dr Katherina Dalton, she's an expert in this field.

I found when I came off BCP at 30 after being on it for 12 years that my symptoms improved no end but maybe I was lucky.

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