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[Dramy3]

Hello everyone. I've been in a perimenopausal sh*tshow for the last 5 years since I had a hysterectomy. I'm 47 now and have tried just about everything for symptoms that just keep getting worse. Mainly crippling anxiety, brain fog, nausea dizziness and depression. Having slowly upped my Estradot patch over the last year and menopause GP added in testosterone 6 months ago. Anxiety and depression and brain fog got so bad I was nearly sectioned (I'm on 150mg sertraline btw). Cut out testosterone and went to 50mcg estradot and 2 pumps of oestrogel 3 weeks ago. Had 1 amazing week where I felt better than I've felt in 5 years. And now the nausea, anxiety and dark thoughts are back. I've had multiple blood tests all showing estrogen levels of between 180-290 (not changing much as I upped the oestrogen, hence the GP adding oestrogel to in case I'm not absorbing the estradot patch well).

So I guess my question is--when do you just throw in the towel and accept some of us aren't meant to live this long? I know it's dark and I'm not going to throw myself in traffic, but just need to know if anyone else has tried it all and still failed?

Thanks

[bombsh3ll]

I am so sorry you are feeling this way.

Please don't see it as YOU have failed just because some medical treatments haven't been effective.

My answer to when you throw in the towel is NEVER!!!!

When I was 34 I had a life altering brain injury that left me unable to even sit up without fainting, severe head pain and intractable vomiting. I had to crawl around the floor of my home and pee in a bucket because I couldn't get to the toilet.

My quality of life was sub zero and I was completely abandoned by the NHS, told to just go away and spend the rest of my life lying down.

I did seriously consider euthanasia, but two things stopped me - my children, and after extensive research the knowledge that treatment did exist that could give me some quality of life.

I kept on fighting for care, and after 5 years I got a blood patch (privately) that over several months worked to stop the CSF leak so the splitting orthostatic headaches went away, after 6 years I got medication to support my blood pressure and after 7 years and a private online consult with a specialist in syncope, made possible by the pandemic as I could never have travelled to London in person, he wrote to my local hospital recommending a pacemaker, which in conjunction with everything else has been completely transformative.

I am so glad I didn't give up, and although I am still disabled and life is far from perfect, I am truly grateful to be here.

There is hope for you.

You felt well before your hysterectomy so there clearly is a particular hormonal milieu that suits you and can be replicated pharmacologically, if not perfectly then close enough to get you better than where you are now.

The estrogen levels you mention are low, especially for someone in her 40's.

Have you considered oral estradiol? In my experience this is a lot better than patches.

Also there is tibolone. This is a 3 in one oral option which I have seen people do really well with after surgical menopause.

Two other treatments that have really helped during my own journey and which might be relevant for you, are mirtazapine, which I initially used for the severe nausea and vomiting in the first few months after my brain injury when no antiemetic licenced for human use was effective, and which I still use now for sleep, and diazepam for the autonomic storms, PTSD and secondary anxiety that I developed as a result of my circumstances.

Never stop trying to get the help you need. It exists and you deserve it.

[CLKD]

Never stop trying to get the help you need. It exists and you deserve it.. I agree.

   Dramy3 - have U been advise by a dedicated menopause specialist, GPs and Gyneacologists sadly don't always understand menopause.

If U had a hysterectomy U probably don't require the progesterone part of replacement therapy though some ladies do find benefit.  Many however have difficulties during that part of their regime.

U could of course give your body a replacement break for 3 months 2 C whether you actually require it.  And get that referral to a specialist, make a list of your problems/worries to take and let us know how you get on.

Which symptom would you like to ease first?  Anxiety can be eased by appropriate anti-anxiety meds, i.e. 'valium' as necessary or Propranolol every day.  I have used both with success otherwise I wouldn't be sitting here!  The betablocka was prescribed at 80mg 3 times a day then dropped to 40mg twice then I weaned off to 20mg for years. 

MayBe keeping a mood/food/symptom diary would be of use?  Browse round.  Make notes. Do read the bladder issues and vaginal atrophy threads, 4warned is 4armed ;-).

[Dramy3]

Never stop trying to get the help you need. It exists and you deserve it.. I agree.

   Dramy3 - have U been advise by a dedicated menopause specialist, GPs and Gyneacologists sadly don't always understand menopause.

If U had a hysterectomy U probably don't require the progesterone part of replacement therapy though some ladies do find benefit.  Many however have difficulties during that part of their regime.

U could of course give your body a replacement break for 3 months 2 C whether you actually require it.  And get that referral to a specialist, make a list of your problems/worries to take and let us know how you get on.

Which symptom would you like to ease first?  Anxiety can be eased by appropriate anti-anxiety meds, i.e. 'valium' as necessary or Propranolol every day.  I have used both with success otherwise I wouldn't be sitting here!  The betablocka was prescribed at 80mg 3 times a day then dropped to 40mg twice then I weaned off to 20mg for years. 

MayBe keeping a mood/food/symptom diary would be of use?  Browse round.  Make notes. Do read the bladder issues and vaginal atrophy threads, 4warned is 4armed ;-).

Thank you for such a detailed reply and the advice. I have been seeing a GP through the Newson Clinic so can tick that one off at least! I take propranolol as needed but it doesn't really help the anxiety a lot--I'm just an anxious/panicky person with a low heart rate. I also have xanax (like valium) for the storms and they've literally been a lifesaver. Had to get those in America though, as doctors in the UK seem very scared of benzos (and fair enough, they are so addictive). I didn't have progesterone for the first year of my HRT, but the menopause GP added it 3 weeks ago just to try everything she could. I think I'll drop it in the next 2 weeks if I don't see any improvement with it.

Good shout on the symptom diary. My wife does love a good spreadsheet!

Thank you again. I just need to hear people have tried what feels like everything and do finally get consistent relief. One good week ever 6 months just doesn't cut it.

Thanks again

[CLKD]

Hi.  I've never understood using a BB part time.  I was told to use it to keep the anxiety levels more even  .  Is your heart rate low, how about your resting pulse?

DH has a low heart rate and resting pulse.  It worries GPs sometimes  he also sweats copiously when eating anything spicy  .........

Let us know how you get on.  GPs don't consider prescribing Benzos under supervision which is how mine regulated what I required.  I would use it the night B4 an event that I was unable to get out of, usually visiting family  and although I knew that I could take 5mg at lunchtime the next day, I never required it.  MinL hated that I went to sleep mid-afternoon  but she would't have seen her Dear Son as he wouldn't visit without me   

The next day however I would ache from the tension 

[Dramy3]

I am so sorry you are feeling this way.

Please don't see it as YOU have failed just because some medical treatments haven't been effective.

My answer to when you throw in the towel is NEVER!!!!

When I was 34 I had a life altering brain injury that left me unable to even sit up without fainting, severe head pain and intractable vomiting. I had to crawl around the floor of my home and pee in a bucket because I couldn't get to the toilet.

My quality of life was sub zero and I was completely abandoned by the NHS, told to just go away and spend the rest of my life lying down.

I did seriously consider euthanasia, but two things stopped me - my children, and after extensive research the knowledge that treatment did exist that could give me some quality of life.

I kept on fighting for care, and after 5 years I got a blood patch (privately) that over several months worked to stop the CSF leak so the splitting orthostatic headaches went away, after 6 years I got medication to support my blood pressure and after 7 years and a private online consult with a specialist in syncope, made possible by the pandemic as I could never have travelled to London in person, he wrote to my local hospital recommending a pacemaker, which in conjunction with everything else has been completely transformative.

I am so glad I didn't give up, and although I am still disabled and life is far from perfect, I am truly grateful to be here.

There is hope for you.

You felt well before your hysterectomy so there clearly is a particular hormonal milieu that suits you and can be replicated pharmacologically, if not perfectly then close enough to get you better than where you are now.

The estrogen levels you mention are low, especially for someone in her 40's.

Have you considered oral estradiol? In my experience this is a lot better than patches.

Also there is tibolone. This is a 3 in one oral option which I have seen people do really well with after surgical menopause.

Two other treatments that have really helped during my own journey and which might be relevant for you, are mirtazapine, which I initially used for the severe nausea and vomiting in the first few months after my brain injury when no antiemetic licenced for human use was effective, and which I still use now for sleep, and diazepam for the autonomic storms, PTSD and secondary anxiety that I developed as a result of my circumstances.

Never stop trying to get the help you need. It exists and you deserve it.

Wow. Thank you for taking the time to share your story. And for giving me a bit of perspective. I feel like I've lost that sitting in my little bubble of peri pity. I wasn't aware of tibolone so thank you for the mention--I'll investigate and discuss at my next meno GP appointment. I have xanax (like diazepam) for the really bad times and it's been a lifesaver.


I might get "Never stop trying to get the help you need. It exists and you deserve it" tattoed on my forehead to remind me to keep moving forward. Thank you again for such a kind reply. And I hope your battles continue to ease.

[Dramy3]

Hi.  I've never understood using a BB part time.  I was told to use it to keep the anxiety levels more even  .  Is your heart rate low, how about your resting pulse?

DH has a low heart rate and resting pulse.  It worries GPs sometimes  he also sweats copiously when eating anything spicy  .........

Let us know how you get on.  GPs don't consider prescribing Benzos under supervision which is how mine regulated what I required.  I would use it the night B4 an event that I was unable to get out of, usually visiting family  and although I knew that I could take 5mg at lunchtime the next day, I never required it.  MinL hated that I went to sleep mid-afternoon  but she would't have seen her Dear Son as he wouldn't visit without me   

The next day however I would ache from the tension 

I used to take 40mg propanolol first thing when I woke up as that's when my panic attacks usually happened and the anxiety is at its worst. My HR is usually pretty high (90+ resting) until early afternoon when it goes back to normal. Might try the BB more consistently and see if it helps.

Your inlaws sound fun. I had to dose myself up last Christmas for exactly the same reason. Don't remember a damn thing!

[CLKD]

 . what did U dose yourself up with, I don't drink    ..........

I took my Propranolol at night to ease the early morning anxiety surges which caused me to wake terrified: anytime after 3.00 a.m.! 

[K45]

Hi and welcome to the forum,  in answering your question when do you just throw in the towel i thought over the past 2 years of this peri malarkey I've really felt like giving up too. Honestly, I  think we haven't scratched the surface on how to make perimenopause/menopause more bearable. That one amazing week where you felt better than you have in 5 years means that it is possible for things to be good again. When I was doing a workshop on peer support the psychologist leading the event said something that has stuck with me...that no matter how bad the situation you're in right now, there are many resourceful things you've been doing to make it through to this point. I know how scary it can feel when anxiety and depression take over your thoughts. It can feel as if we've somehow failed at life. The truth, I believe, is that none of us have failed here because we are still here, still getting up and doing whatever we can to keep going. I hope, like me, you'll find some comfort here knowing that you're definitely not alone in feeling this way. Like others have mentioned, it can be really useful keeping a brief diary of how you're going. It has helped me see a pattern of how much my mental health is linked to sleep. Right, I'm starting to ramble a bit (damn brain  fog!) so I'll stop!

[CLKD]

U ramble!   I would like to get the word 'fail' out of the English language!  We simply don't reach where we had hoped to be.  However, every day is a learning curve ....... I think that OFSTED in school is the worst thing EVER.  As well as schools with too many pupils in each Class.  It doesn't give kids the opportunity to ask questions that might lead them to understanding the subject = results.

We need to teach them how to not get to the top in 1 go.  Some will of course.  Others need to learn ......... and there are often several ways: as with finding a menopause regime that helps : of teaching a subject.

Right - off my soap box now 

[Gnatty]

I think that I would hang on to the fact that you had one week where everything must have been perfectly aligned for you hormone wise and you felt really well. This means it is repeatable we just have to find the magic combo for you.!
So either one of two things must have happened - either a hormone lowered and you felt great at that level but then it carried on lowering and so you went below your happy place. Or ... a hormone increased and your body loved it but then actually needed more to continue feeling good. This can be quite common when trying to increase and find the right spot. So I think you altered two hormones which means you might not be sure exactly what's doing what. Maybe concentrate on sorting out your oestrogen as a first job. Also check you haven't changed anything else. For example if I take ground flaxseeds my hot flushes reappear. I can only assume they mess with my oestrogen.
Slow and steady wins the race. By that I mean when you adjust your dose it can take some weeks to be sure of the effects even for those of us in surgical menopause sometimes. I guess when you think how complicated the human body is and how everything interacts with everything else it can feel like we are groping in the dark. Definitely keep notes as has been suggested and keep in mind that there can be quite a gap of time between cause and effect.
Just a final thought, at 58 I wish I had discovered sooner how mood-enhancing exercise classes are. I honestly can't believe the difference to my well being. x

[Nas]

Never give up the fight, not ever! There IS medical care and there ARE treatments out there, but you have to shout loud and clear to get them! Be an advocate for your own health because no one else will sadly.

Meds and complimentary therapies, plus lifestyle changes can work together; it’s finding the winning combination which can take time.

I have treatable but incurable breast cancer. Last November I had a full hysterectomy. I have since been left to suffer debilitating menopausal symptoms on my own. I take hormone blockers to stop any oestrogen feeding my cancer and endless drugs to slow the cancer down. I’ve been down some dark rabbit holes this year. Well I’m not ready to suffer. I’m 53 and want to live. So I’m pestering my oncology team weekly for drugs and therapies to ease each and every one of these god dam symptoms! They were quick to tell me what I could NOT have, now they can tell me what I CAN have; simple!

Good advice from Gnatty!
Keep diaries and track food types which you eat. Does exercise help? How is your sleep?

 Fight for quality of life, it’s so so important. I told my oncology team that if my quality of life is compromised, I will stop my cancer meds. I have children and a partner and living parents; I can’t stop but I have to live.

You can do this!

[Dramy3]

Hi and welcome to the forum,  in answering your question when do you just throw in the towel i thought over the past 2 years of this peri malarkey I've really felt like giving up too. Honestly, I  think we haven't scratched the surface on how to make perimenopause/menopause more bearable. That one amazing week where you felt better than you have in 5 years means that it is possible for things to be good again. When I was doing a workshop on peer support the psychologist leading the event said something that has stuck with me...that no matter how bad the situation you're in right now, there are many resourceful things you've been doing to make it through to this point. I know how scary it can feel when anxiety and depression take over your thoughts. It can feel as if we've somehow failed at life. The truth, I believe, is that none of us have failed here because we are still here, still getting up and doing whatever we can to keep going. I hope, like me, you'll find some comfort here knowing that you're definitely not alone in feeling this way. Like others have mentioned, it can be really useful keeping a brief diary of how you're going. It has helped me see a pattern of how much my mental health is linked to sleep. Right, I'm starting to ramble a bit (damn brain  fog!) so I'll stop!

Thank you for taking the time to reply. It is a lonely time, especially as my wife didn't experience anywhere near this level of problems with menopause (she's 8 years older than me). I feel like I'm just not as resilient, and I'm being a big baby about all of it. Therapy is helping with that side of things, though.

I'm journaling every day and it does help track what's going on, but it's more an emotional release for me than anything. Especially given I try one thing and it works for a while and then doesn't all the sudden. 5 years is a long time to be fighting all of this and even with all the interventions, I'm in a worse state now than I've ever been. But as you wisely write, I have to keep putting one foot in front of the other. Hard to keep finding the motivation for that though.

Thank you again for your kind words of encouragement. It's exactly the sort of thing I need right now.

[Dramy3]

I think that I would hang on to the fact that you had one week where everything must have been perfectly aligned for you hormone wise and you felt really well. This means it is repeatable we just have to find the magic combo for you.!
So either one of two things must have happened - either a hormone lowered and you felt great at that level but then it carried on lowering and so you went below your happy place. Or ... a hormone increased and your body loved it but then actually needed more to continue feeling good. This can be quite common when trying to increase and find the right spot. So I think you altered two hormones which means you might not be sure exactly what's doing what. Maybe concentrate on sorting out your oestrogen as a first job. Also check you haven't changed anything else. For example if I take ground flaxseeds my hot flushes reappear. I can only assume they mess with my oestrogen.
Slow and steady wins the race. By that I mean when you adjust your dose it can take some weeks to be sure of the effects even for those of us in surgical menopause sometimes. I guess when you think how complicated the human body is and how everything interacts with everything else it can feel like we are groping in the dark. Definitely keep notes as has been suggested and keep in mind that there can be quite a gap of time between cause and effect.
Just a final thought, at 58 I wish I had discovered sooner how mood-enhancing exercise classes are. I honestly can't believe the difference to my well being. x

Thank you for the advice. I think you are right and I need to just focus on one thing at a time. Too many variables will drive me mad. When you get to such a dark place, though, all the different doctors and therapists throw everything at the problem to try and stabilise you. You should see my bedside drawer of medication! At least I know now that I'm not absorbing the patches well and can try the oestrogel formulation. Fingers crossed that has a better result. A few other kind people have suggested other options as well, so the hormone cupboard isn't bare just yet.

Oh, and I have a personal trainer 3 times a week for weight-based sessions. When i feel well enough, I go and always feel a bit better after.

Thank you again.

[Dramy3]

Never give up the fight, not ever! There IS medical care and there ARE treatments out there, but you have to shout loud and clear to get them! Be an advocate for your own health because no one else will sadly.

Meds and complimentary therapies, plus lifestyle changes can work together; it’s finding the winning combination which can take time.

I have treatable but incurable breast cancer. Last November I had a full hysterectomy. I have since been left to suffer debilitating menopausal symptoms on my own. I take hormone blockers to stop any oestrogen feeding my cancer and endless drugs to slow the cancer down. I’ve been down some dark rabbit holes this year. Well I’m not ready to suffer. I’m 53 and want to live. So I’m pestering my oncology team weekly for drugs and therapies to ease each and every one of these god dam symptoms! They were quick to tell me what I could NOT have, now they can tell me what I CAN have; simple!

Good advice from Gnatty!
Keep diaries and track food types which you eat. Does exercise help? How is your sleep?

 Fight for quality of life, it’s so so important. I told my oncology team that if my quality of life is compromised, I will stop my cancer meds. I have children and a partner and living parents; I can’t stop but I have to live.

You can do this!

Thank you for sharing the advice and your BC story. I was diagnosed with BC 3 months after my hysterectomy 5 years ago. Bit of a clusterf*ck few months that was. Mine was very early though and I just had radio. Didn't tolerate tamoxifen so stopped that after the first year.

After a lot of research and reading Estrogen Matters (Avrum Bluming) I chose to go the HRT route. It's all just down to what you personally decide, isn't it? But as you say, for me it was quality of life first.

Thank you for reminding me that this is a battle worth fighting. I hope you have calmer seas in the years to come.