Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Dorothy Gale on December 25, 2023, 05:21:02 PM
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Perimenopause has destroyed my life.
It's bad enough being severely ill already with M.E.
I now have zero qualiy of life as perimenopause has caused an even more incapacitated life and impacted more than I could ever of imagined and caused utter misery. The small but happy life I had but a year ago...is now a pipe dream.
I've been on here long enough to know it doesn't get much better in actual menopause so I feel utterly hopeless and I hate my life. I used to love it, despite my limitations. I'm terrified to face next year.....another year of hell and symptoms constant and new all the time...to cause more suffering.
No suggestions. I needed to vent.
Christmas has been tortourous, bedbound and in a mind/body I no longer know.
I will NOT go down the rabbit hole of HRT. Being on here is enough to make me run for the hills from it...even though I know its one sided on a forum.
Life is just gone.
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Hello Dorothy Gale.
I am so sorry that you are suffering and you have my sympathy.
I was also unimpressed with HRT when I first started this journey. I used to read this forum and noted that most of the ladies were using HRT but experiencing problems. I decided to just push through but after three years of worsening symptoms I changed my mind and asked my GP for HRT. Since then I have tried many variations and the regime I am on now is not particularly effective but I am disinclined to change again. Once more I am thinking of just pushing through and hoping that my body eventually settles down.
I sincerely hope that your situation improves soon and that you regain the life that you have lost. Other non HRT women tell me that it all works itself out if you give it time.
Sending you hugs and warm thoughts. You are not alone and I truly wish you well.
Fingers crossed for a better 2024 and take care.
K.
The majority of women do not use HRT so perhaps there is a natural end to the turmoil!
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Hello Dorothy Gale, I'm so sorry you are having a truly rotten time of it. I found perimenopause an unimaginably difficult stage of life, compounded by another chronic health condition - not ME like you, but hypothyroidism. I feel for you as the combination of a difficult menopause with another condition that affects the entire body, day in, day out can be extremely challenging. I just want to offer you some hope though, as for many women once postmenopause some symptoms do reduce in severity & some may disappear altogether once the fluctuations of our own chaotic output settle & our hormones reach a more stable low. :hug:
Wx
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Kathleen, that was a lovely post, bless you.
Wx
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I'm so sorry you're feeling so bad and I really hope things improve for you. The only thing I'd say about this forum is that you get a skewed view of hrt. The people who post are the few who have problems with it, the many for whom hrt works well have no need to be on here. It's obviously a personal decision but perhaps life now is so bad you don't have much to lose by trying. For me it's been life changing though I don't have the added complication of ME. Sorry, I know you said you don't want hrt, it's just that I'd hate you to suffer like this if you don't have to.
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Hi Dorothy. I have ME so I totally understand the impact on your life. I'm in a real trough at present due to some life stresses. I don't as far as I know, have those menopausal problems though, nothing I can't cope with anyway. Mine are localised problems for which I resisted estrogen but now using and wish I had years ago before things got worse. I found this forum a bit scarey at times, people talking about stuff I didn't know could happen and it caused anxiety, but I've also got advice that's helped and it's somewhere to vent as you say. As a fellow ME person, I can only say my strategy is that no two days are the same so I hang on to that. Conserve your energy and if HRT isn't for you, find out what else people have tried. Best wishes
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Hello again ladies.
I am fortunate that I don't have ME but I am miserable as sin at the moment which may be due to me swapping Sandrena gel for Oestrogel at the beginning of November!
I am always hopeful that my poor old post meno body will somehow adapt to its new low hormone state!
I understand that HRT probably works well for many but the ladies on this site are clearly struggling despite their regimes so it is not an easy fix for everyone.
Perhaps in the future there will be a treatment that helps us transition smoothly and happily into our post meno lives without the need for all the experimentation with HRT.
Take care ladies.
K.
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Hello ladies,
Dorothy as You know I had ME which affected me severely about 30 years ago. I now have chronic fatigue and now after being seen at an ME \chronic pain clinic the diagnosis is very likely to be fibromyalgia. Whilst my symptoms are not as severe as yours, my life has been forced to alter dramatically.
I am also perimenopause and to be honest it's been hell the last 18 months or so. I literally had no option to try hrt, my peri symptoms were so bad. It's taken me several months to get to a pretty even keep hrt wise.
Yes, this forum is used often by women who are struggling in various ways wherefore it can seem hrt is more problematic than its worth, but that's not always the case. I l too have used here to vent - and this is a very safe and supportive area for anyone to do so, no matter why. As Jules says, can you research non hrt treatments to help with your hormonal symptoms? I am aware your ME leaves you highly sensitive to many types of medications, but there may be some alternative remedies that could help.
I have never seen hrt as a total 'cure', but much needed by myself to alleviate the worse symptoms, one bit at a time. It is an ongoing process but so worth it for me.
I wish you well x
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I cannot cope having severe M.E. and going through this HELL.
IM TOO ILL ALREADY
..now my stomach is so bad/bloated I can only eat banana..my stomach hates everything I try to eat....the latest suffering from perimenopause to add to the list of unbearable hell.
The overwhelm and anxiety it crippling me. I need oeace I need calm to cope with my ME and all this extra stress is making me so horrifically ill I will not survive
I'm too ill to keep reaching out. Just typing on my phone is almost physically impossible....I'm too ill to get help and there's nothing they can do anyway...they never can except meds I cannot take.
I'm too ill to research too ill to find ways to help. There are none. I can't do the things normal women can to escape the anxiety ..go for a walk, meet a friend, get outside, watch TV, exercise...I'm trapped incapacitated in a bed lying in the dark every day...no understands that. Look up ' severe M.E' on YouTube and see how horrific it is.
There's no way out.
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Hi Dorothy
I don't know what it's like to suffer from ME / CFS / Fibro. However, I do know what it's like to be in a very bad place - my (30 y/o) son was born with a volatile life threatening and life limiting condition and it's been a seriously dark, exhausting and unrelenting journey.
From the tone of your post, I'd say you need an urgent intervention from a mental health team NOW. You're currently at risk, and you know you are. As well as health support, you need help from Adult Social Care. I'm really hoping you can get hold of someone you trust to request an URGENT referral.
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Hi Dorothy
I don't know what it's like to suffer from ME / CFS / Fibro. However, I do know what it's like to be in a very bad place - my (30 y/o) son was born with a volatile life threatening and life limiting condition and it's been a seriously dark, exhausting and unrelenting journey.
From the tone of your post, I'd say you need an urgent intervention from a mental health team NOW. You're currently at risk, and you know you are. As well as health support, you need help from Adult Social Care. I'm really hoping you can get hold of someone you trust to request an URGENT referral.
I agree. Dorothy, I do know what it's like. In the early stages I was so bad I couldn't tolerate my own breathing. I do know from experience that the anxiety from it makes it loads worse as it drains any depleted energy you have and your energy stocks are just about keeping your body functioning. It's probably why you can't eat. Digestion needs energy. Do you have anybody who can contact a doctor, adult social care crisis number, mental health helpline 0800 0130707, well being and mental health helpline 0800915 4640 or text HELLO to 07860 022846. You are not alone. Things can get better.
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Samaritans number is 116123.
Dorothy, though you think at this moment in time, that there is nothing or nobody that can help, there is. Your health can't be resolved instantly but it can be improved. Please keep in touch with us and tell us whether you've made headway.
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I cannot get then involved.
My carer/partner is literally isn't coping...his brother just died, he's going through hell and all this year has been to hell and back with me and my health and he can't take anymore, it's all come to a head the last week. I could see he was not coping...I cannot put an ounce more on his plate.
I got involved in mental health team in the summer. It was all consuming and hell for us both.
I cannot tell him my concerns and how I feel right now as he's hanging by a thread himself.
I will have to cope. He's worried sick enough about me.
I can't reply anymore thank you all I'm sorry
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Hello again Dorothy.
I am so sorry that you are feeling this way and I agree that you need help.
Please consider calling any of the numbers that Jules has listed for you. There are people who can provide help and they are only a phone call away.
Sending hugs and please keep us posted.
Take care.
K.
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I cannot get then involved.
My carer/partner is literally isn't coping...his brother just died, he's going through hell and all this year has been to hell and back with me and my health and he can't take anymore, it's all come to a head the last week with gum. I could see he was not coping...I cannot put an ounce more on his plate.
I got involved in mental health team in the summer. It was all consuming and hell for us both.
I cannot tell him my concerns and how I feel right now as he's hanging by a thread himself.
I will have to cope. He's worried sick enough about me.
I can't reply anymore thank you all I'm sorry
A friend or neighbour? You can ring the samaritans yourself and at least keep talking to someone. Talk to them as you are to us. I can't tell if you've given up and accepted that you will always be ill or you feel you're life is so bad you don't want to live it, but please talk to someone. Some of the numbers I gave are not part of social care services.
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All they offer is medication. I can't take it.
I've already been there with all the doctors and mental health. I know I need help but they just say take meds and I can't...
I'm sorry I'm letting you down thank you
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Hi, I’m so sorry you feel like this. You deserve help and support. I found myself calling the Samaritans a month or so ago. A business colleague of my husband’s committed suicide and I was trying to support my husband but had no one supporting me. They listened to me, didn’t judge and didn’t add any unnecessary emotional stress into the situation. I never expected to make that call and I ended up speaking to them again on several occasions. I don’t know if that helps you feel that you can call them but I hope it does.
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Hi there
It's good to see you say 'I will have to cope' because that means you're thinking about how you're going to manage. It's a step.
You must love your partner very much and it's so difficult to see someone you care about in pain. Sounds as if it's been a horrible year for both of you. And it's hard to keep going when there's not much light at the end of the tunnel ...
But we're here, and we've got a few torches between us.
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Thank you all so much for being so kind.
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And you're not letting me (or anyone else here) down. I'm really sorry you feel so horrendous.
Depressive episodes (that can go on for years) are extremely hard work; but as Jules and Fiz say, there are some glimmers of hope.
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Dorothy can only empathise too that you are not letting any of of us down - or your husband or yourself.
Not one of us can imagine how your life is right now. In all your own pain you still find the strength to careq for your husbands own suffering, and as is also your primary carer you don't wish to add more .on him. But it is plain you need to seek help.
Please do call.someone. Talking out loud to someone non judgemental can bring a an enormous relief. Is the ME phone helpline open? They may have a greater understanding of your specific needs.
I also understand the huge physical strain it can be for you to even be able to type a reply, but be sure people do care. Please think about phoning a helpline. X
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I am sure you know it but ME association phone helpline is
0344 576 5326. Hours are 10-12. 2-4. And 7-9. Xx
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Dorothy, you might not be able to take in much at the moment, feeling as you do... but I just wanted to say 2 things...
1. Like Sheila says above, you get a very skewed view of HRT if you're basing it on forums like these. The vast majority of women love HRT immediately and have no problems with it. Only the people who have problems, find their ways to forums like this! Myself, it has fixed ALL of my low estrogen symptoms - and it did that within a few weeks. What I'm dealing with, is thyroid stuff now. Please at least give it a try, you owe that to yourself. I mean, if you're thinking desperate thoughts without having even tried something which might resolve it all for you.... you may as well...
2. A lot of people who have been diagnosed with ME really have thyroid problems which don't show up on regular TSH and free T4 tests. Because the active thyroid hormone is free T3, and the NHS doesn't even test for that. My TSH and free T4 were always normal so the NHS didn't want to know about anything. It was only when I did a private Medichecks Advanced Thyroid test which includes free T3 that I realised my T3 was quite low - and testing rT3 privately then showed very high.
And then there are things like B12 deficiency, low folate, low D3 - all of which get increasingly common as we age because our guts get less good at absorbing nutrients and because foods are depleted these days. Before chalking things up to mental health only, please do investigate and trial all you can. The body and the mind are incredibly related and really are one organism. I know how exhausting doing this is, because Ive been doing it myself for the last 2 years. I thought about killing myself about a year ago, although I never told anyone - because I just couldn't function on 3 hours sleep a night. But I'm now on the road to getting better and am 80% recovered.
Please don't give up. The information is out there and there are people here who can help guide you with tests and supplements and meds that might help.
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I tried ti kill myself last May
This is why I feel there isn't a way because my body cannot tolerate meds or supplements. I've tried all the supplements recommended to support my body through menopause but I react to them all and ive spent so much money in them trying.....
I tried hrt. It was such an assault on my system it made me too ill and I couldn't cope being more ill. My anxiety of taking medication is through the roof now . .as I've had 30 years of reacting so badly .I have a phobia of it......but I keep trying...only to get bad reactions I even react to complain etc
I was just about coping......until my stomach issues of old started and now I can't eat. I feel menopause has caught up with me and my stomach now and I won't tell the gp as I've been through this 100 x with them had all the tests and nothing ever shows up and they never can know what to do....it just has resolved on its own.......but I'm scared this time, given I'm now so impacted by menopause it doesn't stand a chance so there's no way out.
Literally feel hopeless
I know you're trying to help and you're so kind.
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You sound completely overwhelmed, my dear. It's not possible to process information when this physiologically and emotionally drained. You need rest. You need space. You need time to gently observe things change as the P.E.M passes. It will. You will have had episodes like this in the past, I am sure. You made it to a better level, not amazing, but less exhausting. Think of the steps you took to get to that place and repeat them, gently and kindly. Just let everything be as it is, meantime. You have what it takes just to rest.
Thank you xx this is the problem. No rest happens even tho I'm in bed. Peri has caused such hell it overrides everything and no rest is there. I'm so terrified all the time.
Part of our lounge flooded today...my partner who is going through a break down himself is in bits and this was the last straw..he's in the house in a terrible state and I'm in my bed in my state . .its a terrible situation and now I can't even eat because of recent stomach issues o that in itself is causing me to be really scared and tipped me over......I was just about coping till that happened
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Hi Dorothy Gale
Is there a relative / neighbour/ friend who could help deal with the flood in the lounge perhaps?
You have received some extremely helpful and supportive advice from “team Menopause matters”. Maybe when you are feeling physically and mentally stronger, you could decide how you want to proceed going forward?
The thing is, even when we feel we are at the end of the road and we feel NOTHING is going to make us feel better, nothing in the world, the brain has a habit of fighting for survival and you will be thinking about the next step. Maybe not right now, but at some point.
Before Christmas, I received some devastating news regarding my own health, whereby I was diagnosed with a disease which could potentially shorten my life.
How am I dealing with this? By taking an hour of the day at time and setting small achievable goals via a list ( I’ve always been a “ list” kind of person!)
I know you said in your original post, that you didn’t want to go down the Hrt rabbit warren, but as has been pointed out, for the vast majority of women, HRT has the potential to be life changing. And if it could make the worst of your symptoms more tolerable, wouldn’t it be worth a shot?
For now, your apparent suffering must be eased. When you feel able to, keep talking to us. As Elk mentioned, we all have a torch to shine, when the darkness gets too much.
X
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Dorothy, if I could help more I would. I'm trained in mental health first aid and support for those feeling suicidal. I'm an Orange Button holder.
First of all, the fact you've "talked" to us is positive. It may not seem it, but it is.
All the advice on here has been great, don't use up energy on anything you can't do anything about at this time.
ME is so debilitating when it takes a grip, it may be that more than menopause, but menopause or not, you will turn a corner. Things changed to get this bad, so they will change again. Nothing stays the same, remember that.
Medication is not the only solution. Please contact one of the independent helplines. Just to talk. They may also be able to support you with other issues, your flooding etc.
Don't worry about eating. If you're not physically active you won't need a lot, as long as you're drinking. Try to get hold of liquid nutrition.
If one thing didn't help, try another. There's always another thing to try.
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Thank you all. True samaritans.
I dont know what I'd have done without you.
We live in the sticks in the middle of nowhere.
I couldn't ring anyone because my partner is always around and seeing me cry on the phone to someone would break his heart and cause him more pain and guilt, that I couldn't talk to him because he can't take on anymore...he feels so bad that what he's going through is causing me hurt....
Bless you all x
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Thank you all. True samaritans.
I dont know what I'd have done without you.
We live in the sticks in the middle of nowhere.
I couldn't ring anyone because my partner is always around and seeing me cry on the phone to someone would break his heart and cause him more pain and guilt, that I couldn't talk to him because he can't take on anymore...he feels so bad that what he's going through is causing me hurt....
Bless you all x
Sometimes you have to put yourself first, you can't help anyone else until you help yourself. Talk to him, tell him what you're doing and why and that it's a positive step forward for both of you. In the end, it's your life Dorothy so you will do what you feel is right for you. Best wishes
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I remember once when I was in a psych hospital, the doctor in front of me said something along the lines of 'You're not mad. You're reacting normally to an abnormal situation'. Back then I didn't know, as others have said, that 'this too will pass'. It takes a great deal of strength and courage to believe it.
In terms of reaching out to talk to someone, do you know the thing about when a plane is going down and the oxygen masks are released? It's so easy, if you love someone, to want to get the mask on their face first, but you can't do that unless you can breathe yourself. If you want to save them, you have to put your own mask on first and then help them to get theirs on.
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Sorry this is a long post.
So in the end I rang mental health crisis line.
The initial call handler who just basically listens if you just need to talk.....and then refers me as she thinks I need....she was so kind and so patient and listened with sympathy, kindness and compassion.
I was then rang back by a mental health person. She was less sympathetic and was very abrupt and matter of fact. I appreciate that she can't even begin to understand my situation but her feelings were 'we all go through menopause as women. You just have to suck it up and get through it'.
I was made to feel I was just whinging. There was absolutely no attempt to listen and offer sympathy and understand that in my case, being bedridden and very ill and dealing with menopause was nothing like your average healthy women going through it.....who has the capacity to still live life, be out working, socialising, be well (other than dealing with menopause)...
No one understands. Nobody.
Her only help was the usual that they always say coz what else can they do? Relaxation, medication (which react badly too and too scared to take) ...talking
I woke up this morning thinking life is just pointless now. I had very little life before menopause because of my M.E but at least I was able to function and get out n about and live best I could. I was happy and myself.Now, the impact of menopause has impacted my M.E and every part of me so severely, what little life I had before is gone.
Can you imagine dealing with all you're going through with your menopause but being completely bedridden, unable to escape all you feel...with no quality of life....just existing? I doubt you can.........unless you've experienced it.
The final reason being that not being tolerant to meds...or supplements...or being physically able to live my life outside of this bed....food was the only way I could support my body. Nourishing it that way.
2 weeks ago....my stomach began to be affected....its always been my weak spot....I thought maybe I'd get away with menopause affecting it so I could cling to at least being able to eat nice food and meals to sustain me.............but no.
My body is rejecting all food. Just like it has in episodes in the past...even my safer foods I go back to when my stomach is bad....it hates them too. So how do you live when you can't even eat?
So I'm just picking at things just to survive knowing my stomach will hate it and I'll be in discomfort and pain.
Partner says, you've gone through this before with your stomach, for months sometimes and then it just resolves and you're back to a normal healthy appetite and proper meals and all good again...........but I don't think that will be the case this time. Hormones just are making everything deteriorate.
All I hear is fermented this, fodmap that, no gluten, no this, no that, don't eat this, don't eat that....I can't cope with all that. You won't be able to understand but.....
I've gone 12 months without a period. I'm noticing more and more, the symptoms are becoming more severe. Clearly the anxiety and doom..the increase in symptoms elsewhere...
I just can't do this. It's too much. I physically haven't the energy to take on menopause. It's hard enough coping with chronic fatigue syndrome.
I'm sure you must all be sick of my posts and negativity. But my life is one you could only ever understand if you live it I used to be so strong and cope well with my limited life....but since menopause my capacity for coping with ANYTHING has gone . ..I feel nothing but overwhelm and just not able to deal with anything. Its awful. I've lived 30 years with M.E and never once thought I want to end my life or not be able to handle a situation that presents itself....but now I feel I cannot copecat all...not like me one bit. I've lost my brain. I'm not the same girl. I feel I'm letting everyone down.
Just feel utterly no point.
(And the santa emojis are really annoying!! Christmas isn't a wonderful time for alot of people and can be very triggering..and seeing them all over posts is unnecessary...sorry...just saying)
X
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Hi Dorothy. Sorry to labour the point but was the crisis line from adult social care? I know it can be a lottery when you ask for help, it shouldn't be but everything seems to be at present. It's really hard when you're feeling in such despair to not give up, but you deserve help and support and you really need an advocate to contact someone for you, and I'd say your doctor firstly. Have you got anybody other than your partner who will act on your behalf and state clearly what point you've reached with your state of mind and health? You need a care plan for your mental health and your gastric problems. Think about who you could confide in to do that.
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And I agree about the emoji. I find it irritating when they're used in replies to me.
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Thanks.
It was mental health services. Not social care. I don't need social care. It was to talk to someone about my anxiety and not coping. I was under the mental health team in the summer so they have me in their system.
I'm back I their system now. But other than meds not much to offer.
No one has been able to help my stomach issues in the past. I've spent months of tests and trying over the years.
Glad I'm not only one who thinks the emojis are stupid
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Thanks.
It was mental health services. Not social care. I don't need social care. It was to talk to someone about my anxiety and not coping. I was under the mental health team in the summer so they have me in their system.
I'm back I their system now. But other than meds not much to offer.
No one has been able to help my stomach issues in the past. I've spent months of tests and trying over the years.
Glad I'm not only one who thinks the emojis are stupid
Adult social care have a crisis line for any emergency including mental health issues so that's what I meant, not suggesting you need social care. I would still find someone now to act on your behalf. It just needs to be someone calm, and who can communicate clearly and assertive. You need someone not emotionally involved.
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I was prescribed medication a while ago when my anxiety was making me feel suicidal that I didn't take coz I was too scared of side effects so I will start it tomorrow. I know now that I have no choice. Its do or die.
Thank you.
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I was prescribed medication a while ago when my anxiety was making me feel suicidal that I didn't take coz I was too scared of side effects so I will start it tomorrow. I know now that I have no choice. Its do or die.
Thank you.
My son took medication when his life was being debilitated by anxiety and depression. It took some trial and error but he persisted and still takes it. He is doing well.
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I'm glad to hear your Son is doing better now with meds.
Thanks for your support. You're very kind xx
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I'm glad to hear your Son is doing better now with meds.
Thanks for your support. You're very kind xx
You're welcome. I wish you all the best. Remember that nothing stays the same.