PMDD support thread - (Premenstrual dysphoric disorder)

[Wishingforanotherlife]

Since there doesn't seem to be a specific one. And it could also go under menopause as PMDD seems to go supercharged at that point.

Just thought I'd start this as some recent posts seemed to suggest it was a little known condition other than by those who suffer from it. But there are many who suffer from it.

Premenstrual dysphoric disorder (PMDD) is a health problem that is similar to premenstrual syndrome (PMS) but is more serious. PMDD causes severe irritability, depression, or anxiety in the week or two before your period starts. Symptoms usually go away two to three days after your period starts.

Symptoms of PMDD

Feelings of sadness or despair or even thoughts of suicide
Feelings of tension or anxiety
Panic attacks, mood swings, or frequent crying
Lasting irritability or anger that affects other people
Lack of interest in daily activities and relationships
Trouble thinking or focusing
Tiredness or low-energy
Food cravings or binge eating
Trouble sleeping
Feeling out of control
Physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain.

These symptoms occur during the week or two before menstruation and go away within a few days after bleeding begins. A diagnosis of PMDD requires the presence of at least five of these symptoms.

It affects an estimated 1 in 20 women of reproductive age and last year was recognised by the World Health Organization.

The exact causes are still not fully understood but some possible factors are:

Being very sensitive to changes in hormone levels. Recent research suggests that PMDD is associated with increased sensitivity to the normal hormonal changes that occur during your monthly menstrual cycle.
Genetics. Some research suggests that this increased sensitivity to changes in hormone levels may be caused by genetic variations.
Some other research has shown that in some cases PMDD may be linked to stressful and traumatic past events (such as emotional or physical abuse), but there's no evidence to explain how or why.

For further info:
www.bbc.co.uk/news/av/health-53559904
www.mind.org.uk/information-support/types-of-mental-health-problems/premenstrual-dysphoric-disorder-pmdd/about-pmdd/
iapmd.org/about-pmdd

[creekingmillenial]

I take unopposed estrogen from my doctor which she says is safe to do as my estrogen levels being low is part of the cause. I’m also basically intolerant of progesterone.

[Oliv1990]

Hi, I’m 27 and have kind of lately figured out this must be what I have. I’ve only been tracking my periods for a few months but each of those, around 10-14 days before my period starts I’ve had a meltdown of some skrt. I do think I suffer from depression too but these times make me feel things and do things that are more than depression.. I feel totally rejected by people, anxious that they are annoyed and not talking to me, say things to them because of this and then look back and think why on earth did I think this. It’s made me suicidal in the past just for these tiny perceived rejections. Then when I get my period it’s like someone clicked their fingers and I’m fine, though sometimes if it’s a bad month while in that mode I have created issues with friends etc that carry on and so I feel awful all month. It’s so strange but I hate it and want to stop it. Would I be able to request a hysterectomy at my age? I don’t want children, I’m almost certain of that and know that if I did ever want children I would prefer to adopt anyway. (Please don’t say ‘you’ll change your mind’ as people tend to.. I’m 27. When people have children at 23 they’ve made a decision to have children, so not sure why people think you can’t also make the decision not to have children..)

Any advice much appreciated

[Voluptuagoodshag]

@One2late . Sorry for the late reply to this. I would suggest you going to GP initially and explaining your symptoms. It's sounds awful for you but it doesn't sound like you're taking anything at all for it. I am peri and like the OP my symptoms became supercharged AFTER having children and not long after that becoming peri. I'm afraid I don't know the answer medically (and not many medical folk do either) but even just on the face of what you have said - that your DH is a cunt, I'd advise against having kids with someone you describe as such. Please, please go to the docs and ask to be referred to a specialist.

[One2late]

Hello I was wanting some support advice. I suffer from PMdd pms everything under the sun. It is not diagnosed but I dont need it to know I have it. When the time of the month comes 2 weeks before, basically as soon as I'm in my fertile days, something switches. My husband is a cunt anyway in his childish approach to life, but I manage it. When it comes to the 2 weeks period I switch. I cannot cope with anyone or anything. My mind becomes obsessively preoccupied with being annoyed at everything and everyone. Suddenly my outlook on line changes, I actually at time winder if I even want to be alive. The rage has often led me to severly hurt myself by either cutting my arms, smashing my hand through windows. Before when I got my period everthing would calm down. But now whilst I menstruating I am still on fire. Until after, sometimes it co continues. I'm 39. I don't actually know when i will end up seriously hurting myself. I cant have hormonal replacement because I'm trying to get pregnant. However lately I'm wondering if I should have any children, especially with my mood and the fights me and my husband have. I'm during those times now and have only had a fight with ny husband. I have fibroids and severe hormonal issues. I think I'm not a nice person anymore and my hormones have started controlling me. I feel caged.

[HornungTheHelpful]

Would be really interested in hearing other experiences of anyone who has had a total hysterectomy.

I react badly to progesterone - which has worsened since ivf drugs. Currently in my third ivf pregnancy and finally decided I couldn’t cope anymore and have started on sertraline which has helped hugely. Wish I’d done it a decade ago.

However, I’ve been offered sterilisation - third c section - which I’m fine with but don’t want to be lumbered with a pointless reproductive system that only causes me issues. I’m also seriously concerned I won’t be able to have HRT because I can’t tolerate progesterone in any form.

Worried that I’m going to have to go through a few more years of misery before I can do it - plus more abdominal surgery or just live with the issue. Haven’t investigated possibility of doing it all together as assume it is a non starter. Any insight would be gratefully received

[MadamMaltesers]

This has been my reality for 5 years now. I really need to see someone. What kind of doctors specialise in this area? gynaes? or endocr?

[Woollyslippers]

@50shadesoflunacy hello! I'll just bump for traffic. I'm 52 now and whilst I was in more of a cycle, I absolutely had similar to you but now feelings seem to have calmed a bit and are much more sporadic. Albeit replaced with hot flushes that I've never had before. There are so many different factors, uniqueness and what not that it's hard to appreciate that others share the same symptoms. Certainly when I was perimenopausal, the symptoms would go off the scale, it was horrible, like someone had injected me with something during the night. Hopefully more learned folk will come on to give their tuppence worth.

[50shadesoflunacy]

As this is a support thread, I was hoping to get some thoughts. For the last 4 or 5 years, I have had dreadful PMT (or PMDD?). Feelings of utter hopelessness, rage, feeling at rock bottom, out of control, self loathing, and so on. However (fortunately) this literally lasts 1-2 days and then it goes. I have had the Mirena since 2008 (it has been changed twice) and I get zero bleeding so I have no idea where I am in my cycle.

To give a background, I am mid 40's. Prior to this, I think I've had "standard" PMT; bit of grumpiness (but that's all).

Doea anyone else get severe symptoms but over a similarly short period of time?

[Spotify82]

I have this in a severe form. I cut my wrists just out of frustration during lockdown. Thought I was losing my mind. I realised its pmdd. I'm an utter mess. The worst thing is I'm a teacher and when I'm feeling like this this can get challenging at work as I work in a very challenging school. I can stand by all you people out there struggling with this! I dread it and I think my husband dreads it more

[Refereeingfromthefridge]

I'm 41 with 2 young kids and have always suffered with PMT for as long as I can remember. My periods are now really heavy and the PMT is far worse after having kids. I cry hysterically to my husband over something that wouldn't have bothered me at other times of the month. I feel the inner rage. I am far less tolerant and generally hate myself. Once I stop bleeding, I'm on top of the world and remain so for the next 2 weeks until it slowly starts going downhill all over again. I just want to hide away for a week during AF for everyone's sake. I've explained it all to the GP who suggested anti-d's. I've been on them before when my father passed away and I didn't get on with them. I've been on the pill and the coil which both didn't agree with me. I am sick of feeling like this for effectively a quarter of the year and my husband is in the firing line. Have started Agnus Cactus which will take a while to kick in but fingers crossed. Am sick of it. Has anyone had any success with Agnus Cactus?

[MotherMood]

Has anyone been treated at the maudsley for this?

[QuentinWinters]

I think the vitamins help me too. But not every month.

[Wishingforanotherlife]

OK I've just had a period again, only 16 days after the last one, but ....... I wasn't so blue beforehand, I still have more energy. I don't want to count my chickens but am hoping this vitamin concoction is working for me. I truly hope I've not tempted fate by saying that.

[QuentinWinters]

I went back to the GP today as I'm now also having very heavy, clotty periods. As expected, my choices are mirena or changing my antidepressants. He hadn't heard of PMDD. I'm so fed up of it now. Not sure where to turn next

[Wishingforanotherlife]

@gezzab33

Sounds similar to how I started though my FSH was high, that's how the GP knew I was peri. I've embarked on a concoction of vits (similar to Quentin) and so far do seem to be more energised with better concentration. Not counting chickens though, I may just be mid cycle. Will keep reporting back.

[QuentinWinters]

I have to say that I am feeling quite a bit better for taking vit b6 and magnesium supplements. But I agree. The lack of treatment options is shocking whenso many women suffer so severely.

[gezzab33]

My gp thinks I have this, but only offered antidepressants and I don't want them. My periods are now 24 days apart and I'm having panic attacks all of a sudden all the bloody time. Perimenopause it must be but it's unbearable. My hormones tested fine but that goes for nothing obviously. I'm just lost and exhausted. We can't be expected to live like this. I can't even exercise anymore because the anxiety means I'm not breathing properly and get dizzy if I even go for a walk.

[Wishingforanotherlife]

@QuentinWinters it's rotten when GPs are so dismissive. It seems they always try the easy diagnosis first without considering the so many factors it could be. You could try reading up about it all as much as possible then go armed to the GP and perhaps insist on a referral to a specialist. That said, I was referred but PMDD was still never mentioned. So little is known about female hormones which is a disgrace as 50% of the world are females.

[hippospot]

Many GPs seem to have a poor understanding of hormones generally. It feels like ADs are prescribed to a lot of women in their mid-40s onwards who are actually experiencing perimenopause. And maybe it is helpful for some of them, I don't know.

FWIW I had terrible experiences with the Pill (I tried many different ones) and then Mirena. I was on the Pill for 10 years or so and only when I came off to try and conceive did I realise it had affected my mood and libido for years.

If going private isn't an option for you then perhaps it would be good to push for a gynae referral.

[Ceetee23]

Yes I can totally empathise. It’s the easy diagnosis for them isn’t it but go with your gut. You know you best x

[QuentinWinters]

I'm 43. Need to go back to GP but they can be very dismissive. I've been told all my life that it couldn't possibly be hormonal contraception causing low mood and since I started taking antidepressants they just blame everything on depression

[Ceetee23]

@QuentinWinters that doesn’t sound good and does sound like PMDD/progesterone intolerance. And maybe perimenopause depending on your age just because you mention 21 day cycles.

Mine have gone from 29 days to 24 in the last year or so so I figure I’m starting on that road aged 41. Plus symptoms seems to get worse as I get older!

I hope you can find a specialist who could suggest a more suitable treatment.

[hippospot]

@QuentinWinters that is no way to live, it's unbearable.

Can I ask how old you are? Have you always had this issue?

I do advise the website of the Studd Clinic in London - some good fact sheets there. As I outlined above, I went there several times and tried various types and doses of HRT, but have ended up having a hysterectomy to be rid of it once and for all. I feel so relieved.

[QuentinWinters]

Checking in! I'm sure I have this, consulted GP who suggested progesterone only pill which helped with stabilising my mood but then I just felt 4/10 all month rather than 8/10 for the first half and 2/10 for the second. Then suggested I upped my ADs which has done precisely nothing.
I'm def sensitive to progesterone because the mirena had the same effect.
I'm not sure what mynext steps are. I'm also on a 21 day cycle with really heavy periods so basically spend half my life feeling suicidal and angry, 3 days feeling knackered from bleeding and getting up several times a night to sort out sanpro, and about a week being OK. I hate it

[jynnerso]

@Ceetee23

Ok, thanks for that. Things certainly feel out of whack so they probably are!

Do any of you also have other complicating health conditions?
I have an autoimmune arthritis and recently CFS which does blur the picture a bit.
Thinking about it this may be a major factor in not giving the hormone and menstural cycle enough of my attention until now. That and being busy having a family I guess.

Really interesting to read others' experiences.....