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[CrispyChick]

I know I've posted here many times over the years about my struggles.

Now 49 and very deep into peri. I guess I can see that hormones are not my dole problem, but the fluctuations in them are triggers for severe health issues - that noone can seem to pinpoint. Possibly nervous system, dysautonomia, MCAS, ME?! Noone knows.

I really do feel I've reached the end of the road. I can't keep trying. In the last year I've tried chemical menopause, ssri, mininpill (still on that), hrt and mirtazapine.

I'm done. Everything makes me worse. Or gives me horrific new symptoms.

I'd love to just now give my body stability, but as my cycle is crashing through cerazette - I can't ever get stability.

I do feel like giving up. I'm a shell of my forrmer self. My life is tiny and still shrinking.

Anyone got any advice??? I guess that's a big ask. Just hopeful maybe someone else felt utterly dreadful every second of every day, only to wake up one day feeling better. Possibly post meno. 

[Asher]

Dear crispychick

So sorry to hear you are feeling so unwell and defeated, I can’t offer you any advice as such but I can honestly give you hope that things do get better.
I was like you unfortunately started peri in my 30s and I felt nothing was ever going to be good again, in complete despair , depression, anxiety continuous physical health issues too many too list I was housebound, gave up my job was losing my family and I just felt like dying was the best option that’s how bad I felt physically and mentally but I kept going and after many years of suffering I finally felt better, it was when I reached post menopause at age 51 , I’m 52 now and I do still get symptoms but they aren’t too bad , I did get my life back it’s not the same as before, but I’m mostly well, go out , go on holidays visit friends and family and on the whole I’m happy.
Stay strong love , don’t give in better days will come it’s a long tough journey but it does and will get better.
Sending you hugs xxx

[Vicky81]

Crispy im in tears reading your post .....I know how you've struggled over yhe years......I too feel like it's my end of the road at times.....got nothing to look forward to dont go out etc...it's hard this peri.
If you've tried everything....now im no expert here....but what about hysterectomy???
Maybe look into this? Xxxxx
Love you tons xxxxxx

[Nas]

Keep going Crispy, one foot in front the other, yes? I’ve no idea of your hormonal hell, except I know you’ve been suffering for years.

Have you ever considered booking in with a herbalist and going off the beaten track a bit with alternative medicine. A good reputable accredited one, might be able to help? I only ask because I’m on cancer treatment and pain relief. Both give me side effects. So, I thought nothing ventured, nothing gained and found this private clinic half an hour away. She took some basic details and I’m booked in later on this month. Sometime a combinations of treatments
 ( besides conventional treatment alone) might help alleviate symptoms. I’m not saying come off any prescribed meds ( I won’t be!) but just look at different options in dealing with this hell you are in? x

[bombsh3ll]

I'm so sorry, and whilst my circumstances are different to yours I can relate to a lot of what you are feeling.

I just want to send you a hug and say Never. Give. Up.

I did think about euthanasia in the early years after my accident as my quality of life was so poor, however two things persuaded me otherwise, one my children, who would rather have a bed bound mum than none, and the belief that treatment did exist that could make my life more comfortable and liveable.

Like you I spent a lot of time researching and trying different treatments, and I probably learnt more from others with dysautonomia than the available medical literature.

When you have a condition that is poorly understood and difficult to treat you essentially have to become your own specialist.

Sometimes a treatment that you have already tried may in fact be helpful only if taken in an unconventional way - in my case I had been prescribed fludrocortisone replacement early on, but I had been instructed to dose it blind at the same dose each day, which resulted in severe hypertension and headaches.

I discovered from other patients that it really needs to be closely titrated, like insulin, and now I have become adept at keeping my blood pressure close to target.

Same with my pacemaker, having been incorrectly labelled with tachycardia, I discovered through monitoring my own data that my heart rate was in the 30s and low 40s much of the time, and with the help of a private specialist was able to advocate for a biotronik CLS pacemaker which has been life changing in enabling me to sit up reliably in reasonable comfort and go out.

Obviously these things are specific to my situation, however when your quality of life is sub zero all you really have is to keep researching and trying things.

Lifestyle measures are never enough to move the needle with really severe physical challenges, however the way I see it, I am actually in far more need of adequate sleep, an anti-inflammatory diet, exercise and a really healthy mindset than someone with intact autonomic function, so in many ways my life now mirrors that of an elite athlete.

Never apologise to those around you for things you have to do in order to survive or function. Your wellbeing is more important than their convenience.

I hope you are able to get to a more stable and comfortable place. There is actually realistic hope of this if even some of your suffering is related to the hormonal turbulence of perimenopause.

Once your own fluctuations cease, any treatment you try will no longer be chasing a moving target.

[duffed]

I know you mention you've tried HRT, but there are so many different kinds to try! My consultant recommends a Mirena and evorel patches as the best hrt in terms of avoiding unwanted symptoms. Or Is the combined contraceptive pill an option for you, rather than the mini pill? The mini pill won't be doing much for you.

I really do understand how you feel, I feel like I'm rotting away most of the time, and a husk of my former self, and every time a medicine doesn't work I feel heartbroken and lost and don't know where to turn next, but there will be something out there that works for you. Do your levels get tested at all, so you can see what your body is crying out for?

[CrispyChick]

Thank you all. So so much. I really do appreciate this taking the time to reply and offer me reassurance.

I'm definitely hormonal as my mood is flailing around. That's probably why I posted today. So no, the Cerazette is not doing much 

I am so grateful to hear that others, who felt so debilitated pre menopause, are now feeling a lot better post meno.

I know hormones are a massive trigger in my case. But noone seems to know what on earth it is triggering!? I'm booked in with a private specialist this month.

But hopefully, when I get to meno, some stuff may calm down. I do hope so. Unfortunately chem meno made me worse than ever. So there is still fear. But I guess that was a brutal crash.

To answer some of your questions - Nas - I started out at a good herbalist 8 years ago. Nothing helped. And in fact herbs can send my symptoms into overdrive just as much as hormones can.

HRT. Nope. This isn't about type/style of HRT. My body's reaction to hormones is off the scale. I won't try HRT again pre meno.

Combined pill - waded my way through them all a few years back. Tried again last year. Hell. Plus I'm nearly 50 so they'd make me come off.

I think I need to see if I retrigger another bleed this month. If I do, and my symptoms are as diabolical as this month - I will need to try something. So I may buy and try zoley. I actually already have it. But it will be hell. But it's whether that hell can calm. It used to on a pill. It was the changing that was carnage.

I'm also about to start brain retraining. I'm being told by neurology this is all nervous system dysregulation. I believe some of it is. But there's a lot more to it. I don't think he understands my hormonal triggers at all.

To those that feel better post meno...do you taks hrt?

Thank you so much ladies. Asher your post resonates  Bombshell - you've been through so much. But you are so right. My kids too would rather a housebound mum than no mum. That I am sure. 

Thank you all 

[Asher]

Hi crispychick ,

Just to answer your question as to whether I use hrt post menopause, I did for years but don’t now , during my hideous battle with hormones I finally decided to throw in the towel and try without it after 7 years of using hrt , I couldn’t get hrt right at all and I tried everything at every dose, and I do feel better without using systemic hrt , I do use ovestin though.
Not advising anyone not to use it just my own personal experience, unfortunately it didn’t agree with my body at all .
Keep strong you will get through this x

[Minnie Mouse]

Hi Crispy, I too have been through desperate times, a hormonal rollercoaster.
On my knees with it at times.
There really is light at the end of the tunnel when the hormones stabilise.
I'm not post meno yet, but it's really starting to calm down.
I take HRT, but there's been a lot of tweaking along the way to get it right, at times it has felt like it was making it worse.
I echo the advice about lifestyle - I learned to stop worrying so much about others & laser focus on what I needed: sleep, high nutrition food, self-care.
One day at a time xx

[Seasidegirl]

I feel your pain Crispy,  I have overactive thyroid (toxic nodules not AI) which was undiagnosed for 6 years until I went private because despite being massively debilitated and symptomatic I was "in range"

I started HRT prior to the thyroid diagnosis and felt incredible for 6 weeks but since then it's like everything I tweak dosage of anything things improve for a bit and then it's like my body sabotages itself, I feel crap again and my symptoms go backwards.

Having overlapping issues is a nightmare,  there is no joined up medical thinking and we are left alone.   

I'm 56 and still waiting to hit meno and it's crap, .   I can't suggest anything helpful,  I can only sympathise and say I hope you find something that works for you and send lots of love

[CrispyChick]

Thank you ladies 

It really is helpful to hear that many of you had a  torrid time in peri...and feel a bit better post meno.

I know I've tried too many things, manipulated my hormones too many times. Nothing has worked. I know I need to now just stop.

I'm 4 weeks clear of any changes - the last one being retrying mirtazapine - which was amazing for my hot flushes but gave me severe agitation and startle response and anger. So yet again. A fail.

The last 4 weeks have seen me descend to one of my worst places. I've fekg so so ill I've considered removing myself. But I'm still here. The severe Ill feelings are now calming. Now I feel so utterly hornonal. That's hell too. But I can live through that - mood swings, crying, scratchy pre periody stomach, extreme agitation and constant headaches. Joy.

I guess now I just need to try and accept.

Hope.

I do think the neurologist is right. I do think my nervous system is absolutely destroyed. I'm burnt out. I'm traumatised.

So I've booked some therapy to try and help me deal with this. I am frustrated with the NHS. I've been asking and begging for mental health support to help me deal with all this - nadda. Now I'm having to pay yet again. But I'm still off work on no pay. Frustrating.

Do you ladies think I'm best now stopping my trials?

If, for example, I try zoley pill instead of cerazette - I'll trigger 6 weeks of hellish 'poison' asy body experiences the change. I'll also trigger severe nose pressure and headaches and possibly stomach pain - I suspect MCAS or hist intolerance in here too. And that's all before the actual hormones bed in.

I think I've probably tried enough. 

Time to just live through the hell and hope?

My sister was through at 50. So fingers crossed.

[CrispyChick]

Minnie mouse - you feel yours starting to calm down and stabalise? Even before post meno?

I guess that's it. I do now need to stop chasing, stop changing, stop trying. Just let me body find it's place. Which is probably still horrific. But maybe in time...

What are your periods doing now things are calming?

I intend to stay on cerazette in the hope that it stops ovulation and massive surges. It did work for me when all this started 8 years ago. But things feel a lot stronger now.

[Konijntje]

I can’t say if it will be the same for you CrispyChick, but I don’t do well on oral estradiol at all. For me, I respond very badly to estradiol fluctuations, but respond well to estradiol without fluctuations.

With oral estradiol, I seem to absorb very quickly and seem to metabolize too fast too. Even when I split my dose to mornings and evenings (1 mg tablets), I got nauseous and jittery 1-2 hours after taking it and I got hot flushes 10 hours after taking it. So, pills like Zoely or Qlaira wouldn’t be a good option for me.

I also feel too many fluctuations with patches (besides the rash), I would be nauseous and jittery the first day, then 1 good day and then a day with symptoms again. Most even for me is lenzetto (I split my dose to every 12 hours), but the dose was too low after a while. I’m now on oestrogel (also split the dose to every 12 hours) and this feels pretty even too.

So, if you would want to add estradiol again, I would recommend (if you also respond badly to fluctuations) starting with a small transdermal dose added to the cerazette twice a day to get a very stable level. I think that I read somewhere that too small of a dose is counter productive, but I am not an expert on that. If so, lenzetto might be your best bet, because 2 sprays would still be less than a 50 mcg patch (and less than the estrogen in Zoely) and very easy to split.

All recommendations are of course coloured by our own experiences, so will be all over the place. You know your body better than us, so hopefully, with the different recommendations you’ll get, you’ll be able to pick one that suits you.

I too hope things will settle down after menopause, I’m 50 and probably in late peri. I’m progesterone intolerant and am hoping that my newest trial (dienogest + oestrogel) is going to work out for me. I was on Drovelis (drospirenone/estetrol) before, but while the drospirenone was better mood wise and suppressed me, the estetrol was too low for me (very stable though, it has a much longer halflife than estradiol) and the drospirenone caused my eczema to flare up (and very dry mouth, for me the diuretic effect was very strong).

[Lucoley]

I really feel for you. Have you tried any anti depressants in the past? I have a longstanding anxiety disorder and the only thing thst has helped is an SSRI. Its very true they can make things worse before they get better. I note you said Mirtazapine made it worse but with these medications you need to stick it out.

Im 51 and post menopausal and have only started HRT this year bit have struggled with progesterone intolerance. Im disheartened and pondering my next steps.

I had a good old think yesterday and Im going to put my focus on what I eat and try and get back to the gym. I say try because motivation has done one.

Its so hard to accept all this isn't it? Im really struggling to accept this is the new me. The ups and downs, the tears, the morning anxiety, the crisis in confidence. One of my biggest heartbreaks at the moment is thst I dont feel able to look after my grandsons. I dont know why as Im fine when Im doing it but the fear of responsibility sends me into a spiral. I can't look forward to anything.

I know Im too hard on myself and I suspect alot of us are. Demanding better reactions and better days from ourselves instead of accepting this is shit but not permanent. Can't even drink anymore, god damn it!

[Kathleen]

Hello CrispyChick.

My heart goes out to you and so much of what you say resonates with me. I completely understand and sympathise.

I am post menopausal and gave up HRT seven months ago partly because I never felt great on it and partly because I hoped that it would be easier for my body to stabilise without adding the extra hormones. In all honesty I haven't felt too bad, I've had a bit of a return of flushes and jitters but it's been manageable. I was prepared for my vaginal dryness to increase as it did the last time I took an HRT break but after a week or two of itching and soreness my symptoms resolved. I have never used topical oestrogen and I haven't needed vaginal moisturisers either. 
Just before giving up on Sandrena gel I began eating a serving of Soy beans every day in the hope that their phytoestrogen content would compensate for the lack of oestrogen. Perhaps this has helped keep the dryness away and one of the ladies found some PubMed research that supported this idea.
I am continuing with the soy beans for now in the hope that other symptoms of the menopause will also improve in time.

I have also recently discovered that I am iron deficient and some symptoms seem to overlap with the menopause, namely fatigue, headaches, irritability and brain fog. Iron deficiency also leads to cold hands and feet and disturbed sleep. My GP has  prescribed iron tablets ( Ferrous Fumarate ) which I need to take for at least three months. I wonder if you would benefit from a general blood test which could identify any deficiencies that could be causing or contributing to your problems.

I am sorry that I can't be of more help but you are not alone and help is put there.

Wishing you well and sending hugs.

K.