PMDD support thread - (Premenstrual dysphoric disorder)

(45 Posts)
Wishingforanotherlife Mon 17-Aug-20 14:32:25

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

OP’s posts: |
Willowkins Mon 17-Aug-20 19:59:23

Thanks for starting this thread. I had no idea when I went through this that it was a thing. Thirty years ago I thought I must be very stupid or going mad. I finally have my hormones under control with HRT. Hopefully women affected by this will now get the help and support they need.

Wishingforanotherlife Mon 17-Aug-20 22:50:57

It's shocking that it's so under reported or dismissed as 'women's troubles' in hushed, pearl clutching tones.

OP’s posts: |
FranklyDearIDontRiverdance Mon 17-Aug-20 22:59:33

I have this. It’s dreadful.

Until I starting meds I had around a week a month where I wasn’t in a complete mess mentally or spending the rest of the time feeling shit because I’d been so awful to live with.

Interestingly, I suffered badly with PNA after both children - I wonder if it’s connected to the fluctuating hormones.

I take Sertraline now and I feel a lot better, I have previously been near suicidal in the run up to my period. I still feel lower in the week before but I can recognise it for what it is and not spiral in to a pit of anxiety and despair.

Ginfordinner Mon 17-Aug-20 23:01:04

Vabessa Feltz and the R2 doctor covered this at lunchtime today.

Tensmum1234 Mon 17-Aug-20 23:18:48

I wonder if I have this. I hadn’t heard of it until now. I’d always put it down to bad pmt and I’m not sure if my symptoms seem to be getting worse as I get older/after having children.
I think my next period is due in about 2 weeks and have noticed today that I feel absolutely exhausted, my anxiety has been building and I just feel completely hopeless and disengaged with everyone around me, I have no interest in anything and don’t have the energy to tidy, spend time with my family, take the kids out etc and it’s dawned on me that this prettty much every month. I get more and more emotional and tearful as my period approaches and all I want do is eat or lie down... and then my period comes and I feel ok again.
Is this normal? I don’t get any suicidal thoughts thankfully...

Wishingforanotherlife Mon 17-Aug-20 23:29:55

I've never been suicidal but have on occasion lain in my bed and not wanted to wake up in the morning.

I think mine started after having kids and I'm peri menopausal so it's supercharged now, and I have no regular cycle so it creeps up on me. I was crying in the car last week then period arrived two days later. It's so shit! I'm trying a concoction of vits and supplements to see how I get on.

It's the all consuming tiredness and total lack of enthusiasm for anything, even stuff that I used to really enjoy. And anxiety is off the scale, which is something I never suffered from before.

OP’s posts: |
Skibideebapbapbap Tue 18-Aug-20 15:33:00

Hi everyone 👋🏼

I have pmdd it is truly awful. I have just started a thread about zoladex and the awful side effects and weight gain, has anyone here been on zoladex and lost weight after coming off it?

Feeling very low about it all today.

hippospot Wed 19-Aug-20 11:05:21

I recently had a total hysterectomy for this. It means I can avoid progesterone for the rest of my life (it's progesterone that was like a switch flipping and making my mood awful for nearly half the month). I can take oestrogen indefinitely (I feel good on this). I'm 46.

I'm happy to answer any questions about my experience.

I feel nothing but relief that it's over. It's like a new chapter in my life.

Wishingforanotherlife Wed 19-Aug-20 19:55:23

@hippospot did you have any other symptoms?

OP’s posts: |
hippospot Wed 19-Aug-20 21:41:24

@Wishingforanotherlife my main symptoms were depression, anxiety and rage (for 10-14 days a month). In addition I had bloating, tender breasts, clumsiness, poor memory, low libido and sugar cravings. But the mood issues were the most problematic.

Ceetee23 Wed 19-Aug-20 21:55:13

@Willowkins I’m curious what hrt you took. Just because I have pmdd.

Not necessarily all progesterone related for me. I have a sensitivity to large fluctuations in both oestrogen and progesterone. I’ve been started on 2 pumps of oestrogel and have been taking for about 3 months but I think I need to get up to 4 pumps to try and override my cycle.

It’s just horrid and I feel for everyone experiencing this.

Ceetee23 Wed 19-Aug-20 21:58:59

@hippospot hi I wondered if you had to have the injections to stop your cycle before you had the operation as I know my gynaecologist mentioned this x

jynnerso Wed 19-Aug-20 22:09:21

I'm wondering if I have this. I've always thought my pms was bad (sometimes went on for 2 weeks of the month) but for the last 3 years has been even worse! I'm 46 now.

The pattern has changed and right after ovulation I have roughly 3 days of horrible mood swings and sometimes feel quite unhinged - as if I'm looking at everything through a really negative lens. Then I'm ok again, usually, until 2 days before my period when I'm so tearful and depressed. As soon as my period starts I'm back to what I consider to be my usual, pretty optomistic and sunny self.
My anxiety has also been through the roof. I wake often in the night and feel like I'm racing with nervous energy like I've had a cup of coffee ( I avoid all caffeine) and really hot.
Does this sound like pmdd along with perimenopause?

Willowkins Thu 20-Aug-20 01:39:49

Ceetee firstly I just thought it was who I was (things like not being able to make a cup of tea, forgetting how to get home). It took me ages to twig that it always happened just before my period. There was no help from my GP though.
When I went through the perimenopause, I had the Mirena coil and Evorel 25 which worked to begin with but then the dose was too low so I got worse over time (and it was all the time). I was treated for depression.
Now I am on Estradiol 75 and Utrogestan 100 and it works well for me. I no longer take any ADs. I had to go private though to get back control over my life.
The NHS are brilliant at some things but women's medical conditions seem to be a low priority.

Notashandyta Thu 20-Aug-20 02:05:39

Posting in the hope it may help somebody...
I have suffered with pmdd since my mid twenties. Cried when I first read about the condition, that it was a thing, that it had a name. Helped so much to read all the symptoms and have a better vocabulary to describe how I was feeling. Every month I'd spend ten, eleven, twelve days feeling like a different person. Think it was so obvious to me because I am not at all depressive usually. So it was like a different person had taken me over for the second half of my period. No interest in seeing anyone or doing anything. Totally overwhelmed by everything. Easily hurt and offended. Low self esteem. Exhausted and lethargic. Overeating. Depressed and anxious. Couldn't wait for my period every month, the pain was bliss because as soon as I started bleeding, I began to feel more myself again.
There is recent research that has discovered the genes responsible, that mean certain women have an inability to handle the hormonal fluctuations that occur during the month.
I always knew I was pregnant (four times, three children) before a missed period because the pmdd symptoms didnt descend. Why is that? The progesterone keeps rising (as with pp, that is what causes my symptoms, progesterone fluctuations), so why during pregnancy (as after menopause) do pmdd symptoms disappear? I really feel if we could find out what happens in our bodies during pregnancies to alleviate the effects of progesterone, we would have the treatment sorted!
For me, what makes it worse is that women, even close friends, do not take it seriously when I try to tell them. Because they cope and get on with it when they have PMS, they think that I should too. The two are not the same!!
The ladies who manage to get hysterectomies have my utmost respect, because I know the fight they must've gone through to get them, and I know the difference they must've made to their lives. I am 42 now, and cant wait for the menopause to hit.
I've waffled on a bit, maybe its helped someone, either a fellow sufferer or at least to raise understanding of pmdd. It stinks.

jynnerso Thu 20-Aug-20 05:59:46

notashandyta I can really relate to what you say about feeling like a different person - it's such an unsettling feeling.
Think I need to do a lot more reading as you're right, understanding is helpful. Have you found anything to alleviate symptoms? I also knew I was pregnant both times before skipping a period.

Ceetee23 Thu 20-Aug-20 10:00:10

@Willowkins thanks for the info and I’m so glad you are feeling well. I’ve had to go private too as my GP didn’t feel confident to treat me with hormones. I’m due for a review next week so will see what they say. I think I’m also in perimenopause so the symptoms aren’t just pre period anymore and I don’t want to spend the next 40 years deteriorating further.

I probably need to increase the gel to 4 pumps to stop my cycle and they did mention changing to the type of progesterone you are on instead of the Mirena. Did you react badly to the Mirena? I often wonder if it has made me worse.

Ceetee23 Thu 20-Aug-20 10:03:27

@jynnerso it sounds like pmdd and peri to me. Really relate to your looking at everything through a negative lens comment. I’m 41 now and beginning peri menopause and things have certainly gotten worse.

Wishingforanotherlife Thu 20-Aug-20 10:49:25

@jynnerso yes it sounds like it. Having a handle on what all the symptoms are and keeping a chart of them (moods, physical stuff, period), will arm you better if you go the GP.

@hippospot that's interesting because I also have foggy memory, excruciating breasts (which I've never had before peri), lethargy, lack of enthusiasm for simple things that I used to take great pleasure from.

Sometimes I have conversations and cringe at myself as I speak as it doesn't sound like me, sometimes no social filter, often incredibly wired into how others are thinking feeling, over anxious, blah, blah the list goes on. If you had to ask some of my friends of old who don't know me like this they would say it's not the same person. Pre kids I was the most laid back, fun loving, chilled happy person you could imagine. At first I thought it was just some form of PND or Post Natal Realisation as I liked to call it as having kids was bloody hard and I'd never get my old life back. But I truly think that a switch gets flicked and the hormones change forever.

OP’s posts: |
jynnerso Thu 20-Aug-20 15:05:34

wishingforanotherlife a diary sounds like a very good idea. Can't believe I've got to 46 and only just twigged properly that this is a real issue that needs addressing!

For those who have sought treatment from your GP - would you mind summarising a bit from your experiences on what is offered?
I'm really nervous about medication generally, side effects, jumping on the NHS train and potentially making things worse etc.
Does the GP do any tests to see what the imbalances are?

I'm so glad this thread was started, it couldn't have come at a more relevant time for me as have been at the end of my tether the last couple of months.
Thanks everyone...

hippospot Thu 20-Aug-20 17:40:35

@Ceetee23
@Wishingforanotherlife

I went to a private PMS/menopause clinic in London (Studd Clinic) and for over two years tried various different types and doses of HRT to improve things. It quickly became apparent that for me progesterone (mine or Utrgoestan) is what triggers my symptoms. Taking HRT didn't improve the situation but it did make the hell regular and predictable smile

My gynae didn't see the need to shut down my cycle for six months because it was an obvious pattern of cause and effect for me.

Hysterectomy was suggested to me as the "if all else fails" solution and it took me 3 years to really decide to proceed. Without a uterus it's safe to take oestrogen but I can stop taking progesterone.

I have to say I have never yet felt understood by a single GP, male or female, young or old. I went private to sort this out and I appreciate I was lucky to have this option.

I had tried every lifestyle change, supplement etc that is suggested, regular exercise, you name it. Nothing helped enough.

I also went private for the surgery. I used to have very heavy bleeding too which is the official reason for the surgery (Bupa would not have authorised it for the mood reasons alone).

Although I've had PMS since forever, it was definitely getting worse each year as I presumably approached peri. Without meaning to be flippant, the surgery was expensive but certainly cheaper than divorcing my wonderful DH, which felt inevitable for nearly half of every month.

Ceetee23 Thu 20-Aug-20 17:43:11

The GP will probably do blood tests but from what I’ve heard they’re really unreliable when you’re in perimenopause as your levels can be fine one day and wildly out of whack the next.

I think experiences with GP’s can vary a lot but they may refer you to a gynaecologist. I ended up going to a private hormone clinic (not because I have lots of money but because my GP was useless) so I’m under them at the moment and tinkering with HRT. I’m 41.

Ceetee23 Thu 20-Aug-20 17:47:24

@hippospot that’s really interesting. The website for Studd was where I first learned about all this after someone sent it to me when I was suffering from PND for the second time. It was like reading about my life! Glad you are much improved now. I’m under a clinic at the mo which specialises similar to Studd and prob at getting tinkering with HRT stage you mention.

jynnerso Fri 21-Aug-20 16:43:20

@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.....

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