To feel awful for not realising that menopause is so brutal?!

[yayoikusama]

I'm 37, and I was just diagnosed with premature ovarian insufficiency – basically I'm in premature menopause. Not even peri-menopause; my hormone levels are what you'd expect from someone post-menopause.

I've been feeling horrendous for months. Truly thought I was losing my mind.

Exhausted down to my bones, taking long naps every day because I just can't keep going.

My brain doesn't feel like my own. I can't think in straight lines, can't concentrate on anything for more than 5 minutes, sentences aren't coming out the way I want them to (and I write for a living so this is particularly painful).

I've been riding huge waves of sadness and anxiety (it doesn't help that the last two years have been really hard). My body is achy and tight. I feel like I'm living under a heavy cloud. And this is all completely aside from the 'premature' part of my diagnosis, which has pretty significant ramifications for my fertility.

I knew menopause sent you a bit emotionally haywire, and that you might forget words or have hot flushes, but I had no idea how utterly debilitating it could be.

And I'm completely shocked, now, that there are so many women out there battling daily life while feeling this way; that it's not made room for and explicitly supported in workplaces; that we're not treating it as the absolute earthquake that it can be.

It's made me realise the internalised misogyny I've been holding, because I feel shame about it and somehow less of a woman because I'm going through it early. Logically I know that's nonsense, but I can feel it bubbling.

I'm walking around looking at every woman I see, now, of usual menopausal age, doing normal things and holding everything together, and just wanting to give them a massive hug.

I know HRT can work wonders. And I know not everyone has such a brutal time of it, but I also know now that many of us do, and are just 'getting on with things' the way women are expected to, and it blows my mind.

If you've been through menopause, or you're in the thick of it now, did you feel prepared for what was coming? Did you know what it was really like, or did it shock you as much as it has me?

Edited to add: thought I was posting in AIBU – sorry for the weird thread title!

I'm 69. so old, there's was a massive generation gap in menopause literacy.
I had never even heard of Menopause when I had children.
Unspoken of, neither friends, nor family, (my Mum was a midwife ffs) It was like a dirty secret.
I discovered Menopause reading a magasine by accident, so was vaguely prepared.
Even my Gynecologist, never mentioned it, I was the one to ask what, if any, HRT I should take ? I was fobbed off with well you don't have severe symptoms, so don't bother.
I am completely shocked & aghast by this lack of knowledge, & not just by the men, who just minimise or ignore all female hormonal tribulations & more specifically, think that Menopause is a thing that old ladies have & its not important.
It is real, it can be utterly horrific, like period pain, pregnancy, giving birth. Women need to be informed.

If you want a little light relief, look up the 'we do not care club' on FB. Its hilarious. Such a horrible time, but it gets better on the other side, promise!

At the time wasn’t too bothered by menopause side effects, we have a freezing house so being blazing hot at night was almost agreeable! also had always had painful periods with fainting & throwing up (esp. when younger) taken to bed with hot water bottles was only relief @ boarding sch 🙄. but now @ 69 i’m still woken by burning hot night sweats??? no puddles in mid chest like yrs ago, but just a warning some of this stuff goes on etc..
(i never bothered with HRT as had dreadful side effects of various contraceptive pills)

In response to your request in your last paragraph here, here's my first thoughts. Haven't dug into my thinking on this clearly, so forgive me if it's not 100% concrete, but it's my best go for a Sunday:

First, menopause isn't an illness – it's a natural life stage that 50% of the population will go through. It's predictable in a way that sickness isn't. And there are posters on this thread who have been suffering with it for 14 years or more. A 7-day 'fit note' clause in a policy would be laughable.

Speaking of 'fit notes' from a doctor... many symptoms aren’t visible or easily proven, nor (as shown in many people's experiences on this thread) are they reliably taken seriously or appropriately diagnosed by the medical profession yet. So without a specific policy, they’re easily dismissed or misunderstood.

Despite it absolutely being more freely talked about nowadays than before, menopause is still a hugely taboo topic in many workplaces. A dedicated policy would signal that the workplace takes it seriously, and help to normalise conversation.

And as previous posters have said, women going through menopause are often at the age where they're holding senior or leadership level roles. This is predictable in a way that sickness isn't – and correlates closely with women leaving the workplace. Businesses therefore are predictably losing experienced, valuable staff, which also undermines gender equity and inclusion goals.

Those are my first thoughts – I wonder what other posters might add?

I had to work out my dosage as it’s not the same for everyone. One and a half pumps worked for me. I ended up on a custom dose of progesterone that I had to get made in a compounding pharmacy, because 100mg wasn’t enough and 200mg was too much.

Thanks, @BlackCoffeeAndSugar, you're the second person to recommend the Daisy Network. Their website seems quite limited though – is most of their support within the paid-for membership?

And yep, the bone, brain and heart impact of POI has scared me a bit, especially since I'm so dog-tired at the moment that the thought of exercise is laughable... Hopefully HRT will take the edge off enough to get me into the gym.

I went through premature menopause as well. It hit me like a truck, whist I had severe life stresses going on. So I didn’t even realise what was happening. Be kind to yourself OP.

HRT has given me my life back and I feel so much younger.

I had itchy ears, pains in my feet on waking, sore hips, thinning hair, dead from the waist down and was Sahara dry besides. Tired all the time and no real interest in life or other people.

Now I have my pep back and it's wonderful, I'll be buried with my HRT.

Yes it's horrific. I went on HRT because my symptoms were so bad. I came off after 10 years just before Christmas but the symptoms have crept back with a vengeance.

I'm now on the point of restarting as I simply cannot take hot flushes hitting every half an hour in the evenings anymore. It's close to unbearable.

It's possible that your friend had really horrific periods and WILL prefer menopause. I did.

I feel you.

i had cancer in my early 30’s and had a hysterectomy with oophorectomy to prevent it coming back (BRCA cancer). That sent me straight into menopause. I’m allowed HRT as my oncologist said the risk to bone density outweighs the risks from being on HRT but what I didn’t know was that at normal perimenopause age I’d struggle again - hot flushes came back as did feelings of anxiety and low mood, aches, brain fog and everything else. The doctor doubled my HRT meds which helped.

I haven’t felt like myself since my cancer - never since had the energy and although I’m still ambitious, I just don’t feel capable as my brain works differently (or at least that’s how it feels). It’s as though I have all the knowledge I need and I can see it in my head, but I can no longer access it quickly enough.

its shit.

Hi @yayoikusama ! YES YES YES.
I thought menopause was just your periods stopped and then you carried on in life (sounded OK to me)!
I didn't know it could affect every single aspect of life, from career and work to family, marriage and motherhood.
No one warned me about losing the ability to work accurately and efficiently (I write stuff so losing my words and suffering brain fog was extremely frightening and very stressful).
Losing my confidence in presenting my work to clients and at meetings.
Becoming an absolutely HORRIBLE angry spitting monster with DH and DCs when previously I was the calm and gentle laugh-a-minute wife/mum.
Hot flushes that were so bad I had to rush out of rooms without warning and tear off my shirt.
Terrible, paralysing anxiety about EVERYTHING.
Realising my body could not respond sexually like it used to.
The worst was feeling like I was useless and surplus to life -- my brain without oestrogen was telling me my purpose was lost. I had no joy in life. Nothing to look forward to.
I cried all the time.
I eventually went to the GP (I was early 40s) and after blood test results he said I wasn't just peri, I was deep into menopause.

Although it explained a lot, I felt a loss I can't describe. My DS was only about 5.

HRT literally saved my sanity, my career and my family life. I couldn't have continued working or being a good mum without it. My supportive DH also helped a lot.
I am 59 now and still on HRT as I still have to work, although not at the same pressurised level as I used to. I am so glad that people are having more conversations about meno these days, especially in the workplace.

I wish you well OP and hope you will have an OK time of it. And if you are offered HRT think about giving it a go. It took a few different regimens to get it right for me so don't give up.

Oh yeh - and I forgot the debilitating tiredness where you just want to sleep all day but can't, then get terrible insomnia from 3 in the morning and your brain won't let you go back to sleep. Awful.

Also, maybe the people here who’ve been through it can advise, does weight stabilise?

I’ve always been naturally slim. If I’ve needed to diet (post children or generally not eating a balanced diet) I’ve done so relatively easily to get back to my happy weight and then not had to particularly worry about it - it just stayed the same.

However now I very easily put on weight and can’t seem to shift it in the way I would’ve before. It won’t shift and I feel like I’m living in someone else’s body.

I'm almost 56 and haven't found it too bad. The most periods missed in a row is 2, so I'm not really "there" yet. No brain fog, no low mood, some hot flushes, but they are over in a few seconds, so no biggie.

I'm sure I read somewhere than 50% of women don't suffer?

Sorry you are going through this!

It knocked me sideways. I thought that I was losing my mind and couldn’t make a decision to the point where I was crying in Tesco because I could chose between 2 types of squash. My work went to pieces and I ended up leaving and doing something way less mentally stimulating.
I got on top of the hot flushes very quickly with a sage supplement. Then I fought, tooth and nail for HRT. Being told by elderly male doctors that I was being selfish with NHS funds did not impress me. My current GP (elderly male) is trying to tell me that I can’t have HRT for much longer. I am not budging on this.

Once I was on the correct HRT dose, life improved dramatically.
I am willing to bet that, if this happened to men, HRT would be available cheaply from the supermarket and next to the beer.

If you've been through menopause, or you're in the thick of it now, did you feel prepared for what was coming? Did you know what it was really like, or did it shock you as much as it has me?

In the interests of balance, I am breezing through mine. I take HRT because I think I need it and the consequences of oestrogen depletion would worry me, but many of my friends have elected not to go on HRT and they seem to be coping just fine. I have a very senior role; menopause has not affected my performance at work.

I had no idea. My periods just stopped quite suddenly and I thought I'd be okay and it was my reward for 40 years of them. No. Within a year I thought I was losing my mind. My doctor thought I was depressed so I changed doctors and started HRT.

That worked well for about 6 months and I then had night sweats, headaches, really upset over nothing, aches and exhaustion. I then went onto the gel and capsules and it saved me.

But as I've aged my stamina has gone and everything takes ages to get over. I've got a virus now and I'm so fed up with feeling unwell.

I had my only child just after I turned 31, was diagnosed with POI around 33/34 and had my last period around 36, maybe 37.
I possibly started issues with sleep during peri but I also had a baby/small child so who knows which was to blame, the only symptom I really had was my periods had only returned bi-monthly a year after I gave birth. In hindsight the osteopenia I'd been diagnosed with in my late 20s may have been caused at least partially by falling hormones, but diet and having been on Depo were probably big factors too.
It wasn't til I was 42 ish that everything really fell apart. Insomnia had really taken hold to where I could be awake from 2 am and I never really fell into a deep sleep. Memory issues, stiffness, aching joints, and this awful feeling of disassociation, everything just felt 'meh', no joy or happiness, no interest or motivation for anything.
HRT has made a big difference and life feels like its worth living again. OP being without hormones for this extra 15 years or so can have a big impact on your cardiac and bone health so bear that in mind. I wish I'd taken HRT when first offered to me in my 30s but at the time the rubbish Women's Health survey hadn't been completely discredited and my mam had had hormonal breast cancer twice so I thought there was a risk

I don't think it's a big deal at all so far (44). I suspect a lot of the chat about it to be mass hysteria.

Well, at 44 you're not likely to be menopausal.

Perimenopause never used to be a thing until the last few years. It does worry me that we acquiesce in painting a picture of women as constantly subject to our hormones and not fully in control of ourselves, and the notion of perimenopause encourages that.

Probably perimenopausal, statistically (although hi are you everyone's GP). I don't buy the whole end times narrative. Some people get a shitty end of the stick (like those women who collapse from pain with their periods) but most are going to be fine.

Yep. Find it very undermining. When we're too old for "that time of the month eh luv" they can hit us with "the time of life eh luv".

Sending love and sympathy as you’re having a bad time, OP. Especially as you’re so young. I think you’re getting these drastic symptoms because it’s happening at the wrong time. I hope it doesn’t last long, and that you can get the symptoms under control.

For those who aren’t there yet, OP’s sounds like an extreme case. Most of my friends had some annoying symptoms but few of them suffered badly.

In my forties, I became physically very clumsy and unable to save myself from falling down if I tripped, which I did frequently. Apparently that’s quite common, so I suppose it’s a perimenopausal thing.

For menopause, though, I was lucky enough to be at the other extreme from OP. My periods were regular as clockwork, and quite light until one day they just stopped. After that I had a few very mild hot flushes. I had no mood swings or other symptoms. The end.

You sound like a lovely person, OP, with your concern for other women. I hope you’re soon feeling a lot better xx