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!

Knocked me for six. Started at 42, 56 now and although the symptoms have subsided they can still creep up on me. Sleep is horrific and hot flushes have just started again, however rage and brain fog isn’t as bad.

I agree though I didn’t realise how bad it was. Some women sale through it, not me though!

It’s utter shit and I never thought I’d be where I am. Thought I’d be fine as I’ve been lucky (touch wood) with my health.

it’s the mental health side I struggle with. Anxiety, depressed and lack of motivation . It’s not me … plus for no reason I’ve piled on loads of weight and my hair is thin 🙄. GP s don’t seem too interested (I was put on the wrong hrt which created another issue but all resolved now).

Im 56 and Sorry you are going through this so young. I guess my advice is to advocate for yourself, stay informed and stay positive. It may not be as bad as you fear. Some ladies sail through it with no real issues, you could be one if those. I also follow the balance app created by Louise Newson - lots of info and a lovely community of ladies supporting each other .

@Puddledaf wow, that's 14 years.

It's just wild that we're navigating these symptoms and experiences for so long and as a society we're still not talking freely about it, and taking steps to take care of women.

And yes, @Pearl69 – I'm also learning that the medical profession also has a long way to go in taking this seriously. It's awful.

Personally, I've been lucky. My experience has not been anywhere near as bad as it can be. And this was case for me too during the decades of menstrual cycles, in fact, for me, they were worse than menopause. But generally I just have so much respect for women. It's misunderstood, and it can be so debilitating, and we're expected to keep quiet and keen on going as if nothing's different.

That said, for me, the biggest hurdle is the brain fog. My job is different to yours, but spoken language is really my whole job, and I feel most days like I'm covering up this big secret, that actually my brain has atrophied and I'm really no longer able to do my job.

Some people are lucky and cruise through it without too many issues.

I was lucky. I woke up with an occasional hot flush at night but that was all. I don't think it had much impact on me. My sisters have all said the same, so it's easy to get the impression that everyone is like that.

Yes I had no clue, started around 44 and tbh I half expected one day to wake up in a hospital surrounded by doctors who tell me I have a rare condition and they are amazed that I could even walk never mind work, child raise, do housework etc. And then they would give me a round of applause.
Started HRT a few months back, it has helped but not cured.

Oh @dudsville, me too. I'm lucky in that I've been able to share with my team what's going on and they're supportive, but I still feel like I'm a failure somehow, and that it's only a matter of time before they lose patience.

@gossipgossipgossip I felt the same. Honestly wondered if I had a brain tumour. And I'm single with no kids - i cannot imagine having to raise young ones while feeling this way.

I was very lucky physically, with not too many symptoms but the rage! Absolute all-encompassing, Hulk Smaaash! Rage I could taste in my mouth. I’m much calmer now, but it’s like the tide has receded and left behind a veneer of “up with your crap, I will not put”.

Sorry you're going through it so early @yayoikusama x
The mood swings have been the worst thing for me. I've said awful things to my family when I've been angry / down. Then 5 mins later my mood can shift completely and I feel terrible for what I've said. I also can't find the right words when I'm at work sometimes- it's very frustrating.

Forgot to say my spelling has always been spot
on, it’s fricking shocking now 😏

I’m in perimenopause right now.

My immune system is just so shit. I’m getting the hot flashes and I have acne all over my chest. I am not coping at all.

My periods were so heavy and horrific with flooding. I was so relieved when they ended I was grateful for menopause. My menopause although not great was better than the debilitating heavy periods that saw me have 3 days of flooding, having largest tampon and maternity night time pads needing changing every 30 mins at its worst. Now I'm over 60 and apart from feeling tired sometimes life is so much easier.

And I'm completely shocked, now, that there are so many women out there battling daily life while feeling this way;

And “daily life” at menopause age often means the combined stress of being in a senior role in your organisation while also having to support elderly parents.

@yayoikusama I was diagnosed with premature ovarian insufficiency too, and at about the same age as you - it sucks doesn't it?

You don't have to feel bad about not realising this, because the truth is that it is nothing like this for most people. Your symptoms are so extreme that I would suspect something else is going on. But think about it - menopausal women hold down very heavy duty jobs , e.g consultant doctors and surgeons, barristers, judges and senior solicitors, accountants, CEOs of big companies and charities, etc etc - and no-one notices any effect on their performance. I don't think we are necessarily doing women any service by assuming that everyone will be totally struck down,.

For what it's worth, I was lucky enough to go through menopause with relatively few symptoms, and now absolutely love the fact that I am no longer subject to all the inconvenience of menstruation to say nothing of the awful headaches that went with it.

It's absolutely shit. I went through it at 35 due to cancer: no-one around me could empathise (understandabaly)and menopause knowledge/ treatment was almost non existent, particularly when I couldnt take HRT (cancer). Now 10 years later a lot of my friends are starting to go through it and it's hard not to feel a little resentful at their 'woe is me' talk when they have amazing treatment options and there is more understanding yet for me they were like 'just get on with it/ go do some exercise' etc I do try to offer some help and insight though!

I’m in the middle of it now and it has been awful. Night sweats, chronic insomnia, joint pain, mood swings, rage, brain fog. HRT sorted it out for the most part and thankfully my doc is a specialist.

In my experience even HRT isn't that great. It left me a weeping, tetchy mess. I just use a tiny amount of it a few times a week to try and boost my hormones without driving me mad.

I hit menopause at age 52, 15 years ago. I had no idea that "perimenopause" existed and if I'd been prepared, might have understood why the symptoms I'd experienced - especially the constant RAGE - were happening. It's what it's done to my body that I was also really unprepared for - I expected hot flushes (but didn't know they went on for YEARS - I still get them occasionally!) but not the plethora of other issues.

My first menopause was easy - I didn't really even notice that it was happening.

Then I got breast cancer and I'm on an aromatase inhibitor which knocks out any remaining oestrogen (did you know the liver produces oestrogen?) So I'm not producing any at all, and I'm in a second menopause. My goodness I'm really feeling it! Almost the worst thing for me is the itchy 'bits'. I have the mind fog, the exhaustion, the lack of sleep, the aches and pains, all the rest of it, I'm over the hot flushes now, thank goodness, but the itchy 'bits' are really difficult to deal with. I can't have HRT because the whole idea is to knock out ALL the oestrogen.... I can't even have a topical hormone ointment because that can also be absorbed. It's a constant torment.

The Princess of Wales touched on the subject of cancer being a long term thing recently. Until I had it I had NO idea that it wasn't just the chemo, the surgery, the radiotherapy and the constant fear of recurrence - the effects of cancer are far more far reaching. The on going treatment - which you have to continue for YEARS or perhaps for life, depending on the cancer and the treatment - has side effects, some of which are very debilitating. The fear of recurrence doesn't go away. Many of us suffer PTSD. Some of us lose relationships, which break down due to the stress of living with this. Some of us are now no longer to work. We may no longer be able to socialise in the way we used to, we may not be able to have the same sort of relationshion/interaction with our families. We are almost all scarred, physically and this can affect our self confidence. We may not be able to dress in the way we used to. We may have lost weight, or we may have gained weight.

There are many conditions about which we can have no idea how they affect people until they have happened to us. We all need to be more open-minded about other people's experiences. We may not necessarily be able to understand what other people are going through but we need to accept that this is their experience.

Fuck me. I cannot fathom how I get through each day.

No, had NOT the faintest clue and no one talked about it, no one!

I have a love hate relationship with my reproductive parts.

Horrendous periods all my life, passing out/ wanting to vomit period pains, extreme ovulation pain pre period every month, torrential bleeding, cannot leave the house for fear of the “flood”. HATE.
Multiple miscarriages… horrific… HATE.
Miracle, long awaited baby.. LOVE.
long long periods of infertility.. HATE.
Multiple miscarriages… horrific.. HATE.
Unbelievable, long long long awaited miracle baby over the age of 40... LOVE.
Pre eclampsia.. HATE.

Then peri menopause all while bringing up a young child, changing job into a new industry who’s foundation is on complex data, varied travel & lots of working with highly intelligent people… and I can’t sleep, can’t think straight, can’t work things out like trains, flying and routes and timings.
Can’t remember words, what I’m trying to say, and names of who I’m talking to.
I am fat, about 5 stone bigger than I have ever been in life.
I’m hot, emotional, fat so clothing is extremely uncomfortable and feel like shit.
My hair is like wire, wrinkles galore and well, I look like shit too.
I was asked who’s grandma I am at my child’s football last Saturday.

Give up? Fuck no, I’m kicking the arse out of life, having a ball and whinging it like a Queen! It’s not for much longer, I’m 5 years in now so SURELY it’s nearly over!?!?!

I'm laughing at your description but this was completely how I felt and feel now (up with this I will not put!).

@GCAcademic totally. Senior level, aging parents, children... it's all at once, right?

@Internaut I know it's not like this for everyone, and I'm really glad it wasn't bad for you. But it's also a leap of logic to assume that just because women are managing high-level jobs alongside it, they're not suffering from the symptoms. Look at the posts on this thread alone; many women sharing that they're experiencing the same as me, and saying they're doing everything they can to hide what they're going through. Invisible doesn't mean insignificant.

@putitovertherefornow it really does suck. To be honest, I'm still trying to get my head around it, and what going through it early means for my long-term health. Not sure it's 'landed' fully with me, and I haven't even brought myself to look at the fertility / dating conversation yet! How has it been for you, and how are you now?

I agree
It isn't this debilitating for everyone. The worst aspect for me was the horrendous migraine style headaches.

I am out the other side now and it does get better.

I am sorry for those of you who are struggling 💐

I experienced all the symptoms of perimenopause, except for hot flushes, around the age of 42/43. I also had extremely heavy periods for years. I saw several GPs at my local surgery, but none of them offered any help. One GP in particular, whom I saw multiple times, refused to listen when I mentioned the possibility of perimenopause. I had a blood test, but was told it didn’t indicate that I was going through it.
Eventually, I was diagnosed with CFS/ME, fitted with the Mirena coil and referred to talking therapy then which was zero help and actually made me feel worse! My mother had a dreadful experience with menopause, and I felt I was heading down the same path. I was finally prescribed HRT gel, when I demanded that if no one specialised in women’s health and could not help me then I needed to be referred to someone who could help. HRT has helped with my aching joints, anxiety, and emotional ups and downs. I still experience some brain fog, but it’s not as bad as it was.
That said, my GP was very unclear about the correct dosage of HRT, so I’ve decided to stick with just one pump per day for now.