Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: CrispyChick on November 01, 2025, 01:31:20 PM
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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. ???
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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
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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
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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
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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.
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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?
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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 :-* :-*
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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
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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
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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
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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.
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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.
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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).
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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!
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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.
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Thank you all so much ladies.
Just having replies makes me smile. People taking the time out of their day to reply.
I know I need to stop chasing. I've tried hormones in one format or other for years - every pill going (except zoley or qulaira), mini pill. Two years of expensive BHRT progesterone and testosterone. And conventional HRT both oral and patch at times. And...that horrific, traumatising, chemical menopause.
The outcome is always the same - every hormonal move triggers extreme toxicity in my body. Like I'm severely poisoned and so motion sick with it. Sore and tingly scalp. Instant loss of appetite. Noone knows what it is. ME? MCAS? Nervous system???
But, unfortunately my own cycle also triggers it. Always early follicular. Absolute hell.
So the idea of cerazette was to try and tame my own, without suprssing too far. But it's not working.
It's never been about the hormone levels for me. Yet. Always the changes /fluctuations.
So, alas, I'm now going to leave it all be. :'(
To answer some of the questions - Kathleen - had every single test under the sun, plus random rogue ones. Nothing wrong.
I've tried ssri and mirtazapine. Ssri made me so bad 12 weeks in that I was sent to emergency phsychiatrist. Mirtazapine was simply doing the same.
There could be a clue in here - they are revving up my already overstimulated nervous system.
I'm now going to try brain retraining. I've been offered some on NHS. But I've also signed up to the Gupta programme. The AI on that is telling me it can help as my nervous system is overreacting to hormonal changes. So the idea is to dial down the response.
It's worth a try. I've decided I'm better focusing on doing that rather than constantly googling and chasing symptoms.
Never found anyone that responds so severely to hormonal change as myself. But, whilst I'm still in peri, I know I'm not going to get any life back.
Noone seems able to help me. But I'm told perimenopause itself should not make me feel like I'm dying. So there must be more to it than that. :o
Alongside this I now have the normal peri shit
The outcome is always
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Hey Crispy, sorry that you’re still in such a bad way. I really do think that adding in anything, when you have strong volatility as we do, just makes things worse.
Once I knew that the combined pill could not even stop my cycle from breaking through, there was nothing stronger that I could then do.
Hormones, or anything that manipulates hormones, also gives highs and lows which means lots of episodes of depression and hopelessness. Once I stopped them, although anxiety is still high, it’s wonderful to no longer have that ‘what’s the point’ feeling.
I was trying DIM for last 2 months to clear the oestrogen better but, after the relief I got that familiar depressed feeling, so have binned that off now too!
Our neurological systems are so closely driven by hormones and you may have silent migraines like myself, from blood flow sensitivities. I know I have to avoid any strong vasodilators, which is hard as most healthy foods and herbs dilate. Caffeine is my friend and did get me out of some awful nausea episodes and now Chat GPT is helping with my systemic fungal/bacterial issues by not including any vasodilators.
Who knows, when I’m about 10 years post meno (at 5 at the moment) and have very low volatility, I may try the oestrogen again but, knowing that exercise, especially strength training, is more guaranteed to improve heart and bone health, I am doing more dance and yoga. Some people on here will probably laugh at that, versus HRT, but it’s actually a lot more powerful than you think. It’s also a great psychological discipline and distraction.
Just look at the facts, your volatility is at its highest right now but that WILL reduce, gradually in time. If I were you, I would just stop the lot, including the old AD if you still take. Just because it didn’t cause you issues in the past, it doesn’t mean it won’t be adding to your liver/nervous system’s burden in peri, just as the POPs have.
One thing you can say for sure, with no doubt, is that you tried everything.
Now just set yourself free, make your way through the withdrawal, and start to do little things every day to start to stretch your comfort zone, knowing that the discomfort is temporary. The more you repeat the discomforts, the more comfortable they become. Then you add another and another, until you’re flying.
You can do this.
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Thank you Dangermouse.
Wise wise words. I do need to stop trying things. They all just give me heightened symptoms or different symptoms. My system cannot cope.
That said, my plan on stopping mirtazapine was to do nothing more. That was 4 cheat weeks ago, but I went straight into COVID and a breakthrough bleed - which has triggered one of the worst months since starting cetazette.
I will stay on the POP as I did 5 months on no hormones before that, and, to be honest, I just wanted to die. I felt, although still awful, I got a bit of relief from cerazette. But I also did double dose, hrt and mirtazapine. So I just need to stop.
You are so right. I am now at the worst volatility. I need to keep going.
I'm getting Neurological therapy to expose me to triggers - I really don't think that they get that it's hormones ;D but I'll continue.
I now need to proceed with my Gupta brain retraining, trauma therapy and yes, doing little things to expose myself to life. I've started graded exercise to get me back to walking.
I guess I now need to add or remove nothing, to see where my body really is.
Thank you. Xx
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Crispy, in answer to your question, everything is calming down, including the heavy painful periods.
I used to wander around the house in the early hours switching all the lights on because I was so head mashed and anxious. That's all been gone for a while.
It might be total coincidence, but the biggest improvement came when I started my liver detox: obsessively eating nutritious food rather than all the saturated fat and processed food I used to pile in,
much much less alcohol (sadly), more water. Overnight I was able to tolerate the Utrogestan again, and it felt everything was less...fluctuating.
Someone mentioned liver burden - it's as if our peri bodies are overloaded, and can't cope xx
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Just to end (or maybe end) this post .....we love you crispy so much h yiu have all of us here.....yiu are not alone .......I know what it's like ......we are here to give advice and help you .....maybe more experienced ladies in the advice section lol ......but all the love for you is here.
God bless
Vicky xxxxxxxxx
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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.
:thankyou:
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Have U considered hysterectomy? Although major surgery and 1 mayB require some form of HRT after, at least the progesterone part is done with.
Although peri and menopause are 'natrual', many suffer extreme symptoms. I do think that some of this is down to current lifestyles in that humans don't exercise regularly enough and our diets have been crap for many years without us really taking on board that we were not eating as much 'good' foods as convenience + supermarket shopping became easier.
Also women are designed to keep churning out babies which means menstrual cycles were different ; until we had choices.
The National Assocation for Pre-menstrual Syndrome advised me in 1991? to eat every 3 hours, 24/7. I try to stick to this regime and have in recent years cut out a lot of processed food stuffs.
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Hysterectomy? No. Absolutely not. Given that chem meno is used as a trial for that and it made me worse than ever before (although actually, I feel just as bad now with with my own cycle) - it's a no on that front.
This isn't hormone levels. It's like a severe oversensitivity to hormonal changes. :(
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Crispy, I'm so sorry to hear that you are still going through this hell after all this time.
One question... have you had blood tests to check that your FSH and LH have definitely been closed down properly? I know you've tried so many different things with chemical menopause etc but I don't recall you mentioning this particular test result.
I'm convinced that something happens to the brain in the lead up to the menopause and it seems to cause different things in different people. For many it's anxiety (particularly health anxiety) and depression, morning dreads or panic attacks to name a few but for me it was migraine auras. Things start to happen that didn't happen during your reproductive years. I'm sorry but I can't remember how you were hormone wise pre menopause and if you had any problems with PMS, periods or pregnancy etc.
HRT works well for a lot of women but for others it's not enough and other medication needs to be considered. I'm still finding out new stuff myself and I only found out quite recently about the importance of closing down FSH and LH production to create a stable hormone environment even when you are very post menopause. This is not your problem I know but I wonder if the reason so many women don't get on with certain types of HRT and particularly Utrogestan is because it doesn't block FSH and LH production and therefore wreaks havoc with hormone stability and makes everything worse.
I wish I could be of moe help but they are just my thoughts.
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Hi Crispychick,
I am so sorry to read your post. I was wondering if you have tried acupuncture? I see a wonderful lady who specialises in holistic/alternative therapies and have added a monthly session to my "first aid kit" and more frequently when I need it. I really feel the benefit. It maybe a placebo but I don't really care because I always feel so uplifted immediately afterwards. It has different physical effects depending on what is going on in my life at the time - some days I can can feel shattered for the next 24 hours and other times I can feel energised. Worth a try if you can find a good practitioner.
I know it is a long, challenging journey but please don't give up hope. X
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Thank you ladies. :-*
Just no idea how I'm going to survive. Yesterday was another horrendous day. I'm not living, I'm enduring - simply for the sake of my kids.
Mary - interesting about the LH and FSH. So I was tracking them when I started on double cerazette. Chat gpt was guiding me. Within weeks of starting double cerazette my fsh and lh were both held very very low. I had full supression.
Now on one cerazette, FSH is no longer held that low. And, I'm no longer supressed.
But again - it's not the levels that seem to be my main issue. I had to reduce from double cerazette to single because double supressed me too hard, too fast and I was thrown back into horrendous turmoil like chem meno. I also developed agonising pain in my back, neck, shoulders and groin and it has taken a full 6 months to resolve.
So I just cannot win.
Acupuncture - no. Not for me. Tried it once, knocked me out and it sent me hideously dizzy
for two weeks.
I think sevsitivity is my issue!
So I feel stuck. I feel extremely hormonal this month. And it's been one of my worst for feeling so bad I'd rather not be here.
Don't really know how this leaves me with the idea of just accepting it and moving forward. :'(
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Crispy, you probably need to see a variety specialists like a menopause specialist, an endocrinologist, a neurologist and any other type of specialist who may be able to help. I don't know how you are placed financially but you need help and it would be quicker to get it privately. What type of specialist are you seeing next? I think you mentioned a scheduled appointment.
You can't just be left like this to sort it out by yourself.
Is there any chance you could be suffering from a rare subtype of silent migraine? This has very strange symptoms that don't include headaches and they often go undiagnosed but they are more common than you think and very often start in peri menopause. You would need to see a hormonal migraine specialist because a GP wouldn't have a clue.
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Thanks Mary.
I'm under neurologist.
I'm booked to see a specialist doctor privately who specialise in ME/CFC, long COVID, MCAS, dysataumonia and chronic multi organ illness. It's taken a long time to get an appointment. I need these illnesses ruled in or out. Once and for all. My GP has put ME/CFC on my file. My neurologist says I don't have it. And basically says MCAS doesn't exist.
So that's my next port of call.
Neurologist has given me access to neurophsyc brain retraining. Not really got going yet.
Paid to join the Gupta programme.
Endocrinology refused to see me. They can't help apparently. Gynae meno specialist said as chem meno made me worse - it's not hormones and discharged me.
I can't even get mental health support to deal with the trauma and overwhelm of all this. .
Neurologist is adamant it's all nervous system. I'm trying to buy into this. But he really does t grasp my hormonal triggers. >:(
I'm now at the end. No idea where I would go after this. I've already paid a small fortune seeing BHRT clinic, gynae and all the herbs etc.
I shall look into silent migraine. DM mentioned if too. But I have these symptoms every single day, but I flare massively with a period. Not sure that fits?
Thank you for trying to help. Appreciate it x
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Crispy, we once had a member who was plagued with migraines every single day. She suddenly developed them in the lead up to the menopause and didn't have a single clear day. It can be very severe and the symptoms shift making it difficult to diagnose. Her name is Elizabethrose if you would like to read some of her posts. She was a brilliant contributor but sadly left MM.
Good luck with the appointment, I really hope you finally get somewhere. The other specialists you saw sound pretty useless.
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Thanks Mary. I'll look.
Now in a new phase of hell. This month has been brutal. I feel so hornonal - mood, stomach, pre periody feeling in uterus. But worst of all is a horrific over stressy, agitated response.
I can't cope with anything. Nothing. So overwhelmed.
And as I can't take antidepressants - I feel doomed.
Does this part get better...?
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simple answer....yes it does!
I've been through exactly what you describe, now gone.
It's not forever. Be gentle with yourself xx
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Thank you Minnie. I needed to hear that. :-*
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Yes, agree. I always refer to it as going through a phase, it does come to an end. With the ageing process you will find that you go from one phase to another with whatever the body decides to hit you with, but each phase ends.
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Ok. I guess that is helpful. The true 'hormonal' stuff I can see might be a phase. It's certainly getting worse.
But the horrific illness I get triggered by my cycle or any additional / removal of hormones seems different. It's the most horrific poison. And ive now had it 8 whole years. Only settling occasionally on contraceptive pills. That's some long phase :(
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Ladies.
I'm on one of the worst months ever. I'm back to feeling like I'd rather be dead than continue like this.
What do I do?
I was meant to be stabalising on nothing. No new hormones, no ADs etc. Yet only 4.5 weeks I to that and the last 4 weeks have been some of my worst.
Do I:
A) continue doing nothing and see what happens once this month ends? I do feel very periody - so I might bleed through cerazette again.
B) Raise cerazette some again. I started this stint on double dose and it did supress LH, FSH and estrogen - but I developed excruciating joint and muscular pain. That pain has only just lifted (quite interesting coincidence considering the month I am having - I expect E is surging)
C) try a combined pill again. It'll just be carnage, I know it will. I get so many reactive symptoms to changes - severe stomach pain, severe nose pressure and headaches - MCAS possibly. Both gone whilst not trying anything new. And the pills never fully controlled my symptoms before.
Seriously, I'm at my wits end.
I fail to see how it is normal to feel so ill that Id rather be dead. :( but no medic can help me it seems. >:(
My GP suggested adding in mirena :o or COC. ???
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Can anyone cast their eye over this.
So I'm having one of my worst months ever. Starting with a breakthrough bleed (on one cerazette). Day 21 bloods show E is 50. So low.
Fsh is 52 and lh is 26.
On double cerazette my fsh and lh were kept low - supression.
So I'm absolutely not supressed now. But I thought my E must've been high as I feel soooo bad - had that bleed, and feel like I'm about to get another.
But, on the plus side - that's the highest fsh I've ever had. And I didn't think it showed through mininpill.
Do I just ride out this hell???? Is this indicative that it's nearing an end???
I am as sick as a dog this week. Don't understand any of this. >:(
Thanks
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Crispy, this is terrible and I don't really know what to suggest. You obviously need a double Cerazette dose for full suppression probably because you are young. I get full suppression of FSH and LH with 75 mcg single dose Cerazette but I'm very post menopause. Perhaps younger women need more? The aches and pains you mentioned could be caused by extreme oestrogen suppression.
Have you ever had your estrone levels tested? Apparently this is the bad, inflammatory form of oestrogen which doesn't do much good but too much of it could be a problem if you don't have much of the good oestrogen ie estradiol to counter it. I'm pretty hazy on it but perhaps someone on here can shed some light on it? It's a long shot but I would read up on it.
Sorry to ask again but did you have any hormone problems pre menopause? Did you have PMS, pregnancy or period problems? Did all of these problems come out of the blue when you started peri menopause?
From what you have said, your body needs oestrogen but you are not processing it properly and it is poisoning you so the question is why? Assuming you don't have any pre menopause history of hormone problems, what suddenly changed to cause this?
You could try doubling up on Cerazette, it might help.
I wish I could be of more help.
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Hey, I suspect the oestrogen blood test isn’t showing a clear picture as that doesn’t include tissue-bound oestrogens.
I don’t understand enough about the FSH and LH as that may be more accurate.
What is your worst symptom right now that is overwhelming you?
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Ooh MaryG, we just posted at the same time and you also are questioning the other oestrogens.
Great minds….!
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Thanks guys.
Mary - this came out the blue at 41. I had been messing with the herb agbus castus beforehand. So I've always felt that was a trigger.
But I just don't know what this is that is triggered.
My worst symptom DM is, as usual, I feel hideously ill, poisoned and like death. I cannot explain it - which is part of the problem. And that's irrespective of the fact I've felt so hormonal.and nauseous and migrainy this week.
Mary - I used to bleet on about E poisoning me. But I disproved that as chem meno made me feel exactly like this. And I had zero E.
So my current conclusion is it's an extreme body reaction to changing hormones. But right now, I'm at my absolute worst.
Estrone - I had a Dutch test a few years ago. Pretty sure that was tested. There was nothing untoward on it.
I can't double cerazette again as the pain was agony - and yes, I assumed too low E, too quickly. It felt like chem meno.
I really am fading away ladies... :(
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Is it possible that you’ve come full circle? Years of Estrogen surging made you feel hideous, chem meno (No E) was even worse and now super low Estrogen making you feel the same as the chem meno, is it worth gently lowering the progesterone pill to allow a little more of your own estrogen in?
Your FSH suggests your body is screaming for more E.
I had horrific joint pain when my E tanked to 80 pmol, so yours at 50 pmol could well be behind this agony.
I’m not suggesting adding E.
Just throwing an idea out there. Keep going Crispy, we’ll find a way.x
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Thanks Mandy.
I think if I lower the Cerazette, I may as well just stop it.
Not sure I'm ready to do that yet as, before October, I told a friend I was still hideous, but since being on cetazette, I no longer wanted to die.
Well, I'm now back to wanting to die. But I'm only in week 4 of this state. So I feel I need to see what happens next. Pre cerazette I spent 5 months like this.
I dont now believe my poison and vile and feeling like death are linked to absolute levels of E. If I add in HRT it'll trigger it too. Yes, my pain and flushes are - but they're not my biggest issue.
So it must be changing hormonal levels. I was disturbed by the fact chem meno triggered it - but, in hindsight, that was the most brutal 'fluctuation' ever.
The only time I ever got rid of it was on cerazette at 42-43. I lost the poison. But unfortunately my pms was horrid so I started trying other things. But this tells me stability stopped it. Cerazette no longer gives me that stability. I'm just bleeding through it. Something I've never done in my life.
I'm just lost. :(
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One observation I can make there is that whenever I have tried progesterone or progestins, I feel good for a week, sometimes up to 3, and then I feel much worse.
Chat explained something about it initially stimulating the oestrogen receptors which then wears off as it builds up. That doesn’t explain why taking E also makes me ill but your Cerazette week 1 to 3 sounds like this.
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Crispy, I've done a bit of digging around two things spring to mind, inflammation and migraines.
I don't think the angus cactus has done any permanent damage and it was probably just a coincidence. But I think it's worth looking into the combination of inflammation caused by low oestrogen and the onset of migraines.
Inflammation stops you from absorbing and processing hormones properly and might explain why HRT either didn't work or made you feel worse.
Menopause induced migraines are also triggered by inflammation and hormone fluctuations and the two can be connected or they could be two separate issues but obviously both caused by the menopause.
Has this ever been discussed with any of your specialists?
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Thank you ladies. You are very kind to keep digging for me. :-*
I don't think inflammation has specifically been mentioned. No. But I am booked with an expert who deals in dysautonomia, MCAS, ME/CFS etc...so I suspect she deals in this. Seeing her in a few weeks.
Migraines. Nope. My neurologist is specialist in FND. So he takes on 'functional' cases - that's what he believes I have. Central sevsitization. Volume turned up.
I've only really started to have low E in the last few months I think. ::)
Things to discuss with the neurologist I guess. Thank you. Appointments take forever though. >:(
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Just a thought, since you’ve only started to get symptoms of low E recently and you no longer get suppressed on 1 cerazette and get low E symptoms on 2. Would 2 cerazette and then adding back in some E again be an option? I know you’ve tried this before, but things have shifted now for you with your hormone levels it seems, so might be worth a new try? I’m hesitant to suggest it, because you are feeling so poorly right now, but if you are considering trying things again, maybe this should be in the option list?
If you do go this route, I highly recommend trying lenzetto for E, because I find that is most stable delivery for me. Surprisingly enough (because up until I listened to the podcast from this week, I just thought it was just me and my skin) it was mentioned in the podcast that lenzetto has the E level curve with the least spikes and lows from all delivery routes. (I’m very sensitive to fluctuations myself and even with the gel I seem to get them a bit too much, so I might ask to go back on lenzetto + 1 pump of gel if I keep feeling these fluctuations. They might just be my own fluctuations, because I switched progestins).
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Thank you kon.
I only wish I could. That was my initial thoughts - take double cerazette then add in E.
But alas, my body doesn't tolerate add back. I get extreme stomach pain and nose pressure migraines. Possibly MCAS reactions.
I just tolerate nothing. Except progestins. But even the first 6 weeks of cerazette, I was very reactive.
I'm trying to hold out. Be ause change is not my friend. But when my own body keeps changing...
Thank you for the info on lenzetto. I'll bare that in mind if I'm.ever able to try E again. Xx
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I'm having these massive stressy meltdowns. Totally overwhelmed constantly. Cant cope with anything.
Is this part of peri symptoms?
I can't tolerate and AD meds to help. They make me worse!
No hope.
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I'm having these massive stressy meltdowns. Totally overwhelmed constantly. Cant cope with anything.
Yes, that’s exactly what I was like. Thought I was having a nervous breakdown as there was no rationale.
Are you getting good sleep?
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Oh ok. So what do u do about it? I'm losing it over everything. Feel like I'm having a breakdown.
And that's before mentioning all my hideous symptoms.
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I was prescribed 2 pumps of Oestrogel and 100mg Utrogestan. It was early lockdown and face to face GP appointments weren’t available thankfully as I wasn’t capable of driving or seeing anybody. I responded quickly to Estrogen and the feeling of utter terror/anxiety/insanity subsided so I knew it was hormone related. Other symptoms took longer.
I expected HRT to make me feel poisoned because all forms of hormone birth control had made me so ill, pregnancy was horrific (every minute of it) so i really didn’t think HRT would help.
Can you see your GP tomorrow?
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Oh 😞
No. No point fir me. I can't tolerate hrt. I just cant.
Sigh. X
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Yes Crispy, this is the anxiety part I think you said wasn’t affecting you before, where you had more physical symptoms. However, it is what I call a physical anxiety as it’s not thought driven and is the brain reacting to volatility and, perhaps, the dwindling egg supply. It’s a potential alarm to make you take action to continue to pro create!
You can calm some of the adrenaline spike symptoms by lowering cortisol with the amino acid phosphatidylserine.
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Oh Crispy I can feel your desperation. I am in that space too.
I feel like I’ve tried everything. I’m about 4 years post meno and the last couple of years have been the worst of my life. Shows how different we all are as so many people feel so much calmer post meno.
My symptoms are mainly the severe depression and now the nausea seems to come paired with it too. Urgh I dunno, I wish I could put across how much I wish I could help you, how I wish we could all help each other, this is so unfair.
I am thinking of you and sorry I can’t help.
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Crispy, you have mentioned feeling migrainey and having a sinus type migraine feeling so I would continue to explore that despite the neurologist saying you don't have migraines.
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Thank you ladies.
So so many symptoms. Still feeling hideously ill with poison, dizzy and nausea and completely off my food. Now so much overwhelm - I cannot cope with anything. Definitely feel like I'm having a mental breakdown on top of the physical.
I feel so hopeless. I want to give up. No idea where this is headed. This month has been one of the worst ever.
Not sure how to keep going really. :(
But thank you all for your kind words. X
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Oh Crispy, I would just stop the Cerazette as you may be too tipped towards progesterone dominance. As much as prog has been my only hormone friend throughout this hell, it can cause depression and suicidal thoughts when it becomes too dominant.
I would leave all the hormones alone and go down your other routes you have arranged to support your own hormonal fluctuations.
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Crispy, I actually joined this forum to try to connect with you. I’d come across some of your posts during some desperate internet searching about ‘estrogen dominance’ and other twists and turns in your journey and felt like ARE YOU ME???? I’ve been around the block with peri stuff as I know you have and we should definitely compare notes. I need to catch up on your posts when I’m a bit less fogged to have something more informed to say but wanted to reach out right now as I totally hear your frustration and wanting to give up. I’m hoping we’ll have some tidbits to share or at least some understanding (so many people hear about my issues and are like ‘whaaaaaaaaaat?’)
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As someone working with MCAS/HI for some time, I think you’re on the right track. Several things you describe, like responding poorly to hormonal fluctuations and many meds/supps are very common especially when the MCAS is uncontrolled. I worked with a leading expert in the U.S. for several years before she passed away (not from MCAS), Beth O’Hara, and I recovered quite a bit under her care. Step 1 she said was nervous system retraining. Sounds like you’re already preparing for that. I can say that nervous system retraining was a top 5 game changer for me- absolutely worth the effort. I’m still a crazy mess bouncing across message boards mind you, but I was absolutely shocked how many symptoms were nervous system related.
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Oh. Tressym - hello!
I've never been sought out before ;D.
Are you UK or US???
Interesting points you make about MCAS and nervous system. I'm currently doing the Gupta programme - early days yet. And I'm getting some brain retraining on the NHS. But it is so slow I feel it's not going to get me anywhere. Hence signing up to Gupta.
Would love to chat when you feel ready.
What hormonal stage are you at? X
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Dangermouse - did you find the agitation/overwhelm calmed once you were past this stage???
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I had it to such a severe form that I would shake and could not keep any food down. One A&E triage nurse was convinced I was having a heart event one time as she could see I was calm in myself but I had a strong and consistent tachycardia and my neurological signs were all off the scale.
So now it’s much less, much less! Still there as I go through mid-cycle and end of cycle so it has its moments. This month is feeling better for where I am in cycle since I started a full on anti-fungal/binders programme so I’m hopeful that this is more the underlying issue. I’ve always suspected there is one.
Interestingly, MCAS keeps coming up in my Candida/SIFO research, apparently fungal overgrowth can trigger MCAS. I certainly have many of the MCAS symptoms but antihistamines don’t do much so I assume it’s not significant.
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Ok. Thanks. Good to know.
I'm totally buying into the brain retraining today because I can feel how ammped up my nervous system is.
I did get horrific agitation when I stopped my hrt trial a few months ago. I'm feeling pretty periody, so it could be a drop in E. God knows. I've had agitation issues a long time though. After both babies too.
But perhaps never as bad as it is how as I feel like, if pushed (stressed) I have a massive meltdown. And that can be someone asking me to do the simplest, tiny thing.
For your info, MCAS is much wider than histamine. I don't believe I am histamine Intolerant. I too take AH for bog standard allergies. But the MCAS treatments are mast cell stabalisers. Because they release a heck of a lot of other things too. Anyway, I'm hoping I'll get a yay or nay to this when I see that particular specialist shortly. Happy to update u privately if you wish this info??? X
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I’m ready to chat anytime! I’m also 49, in the U.S., and as for hormonal stage- the fluctuations were always tough for me even pre-MCAS, so I suppressed them with mirena IUD for most of my life. My ovaries started overpowering that about 2 years ago and Beth recommended I remove it anyhow as we explored why my MCAS was so spicy (the main reason was continued hidden mold in our home. We’ve since moved to the desert). Anyways, it’s been a sh*tshow since then, discovering how fluctuations as well as high estrogen states cause flaring. I have a lot of MCAS supports on board so this interaction sucked but was survivable. So, I’m really really really hopeful that if the shoe fits for you, it’ll bring some major relief. Long story short, things went from tough to hellish about 9 months ago. My ovaries are cranking out crazy levels of estrogen, at this point trying (and failing) to ovulate over and over. Nobody believed me for the longest time (i.e. doctors and other Reddit posters constantly telling me to take more estrogen like broken records), so when I found your posts, I was like THIS HAPPENS, damn it. I’ve been tracking levels in my urine daily using a fertility tracker to show my semi-useless doctors like- estrogen goes crazy high for days, I feel poisoned and get episodically, deeply mentally ill. Stop suggesting HRT! And that triggers the MCAS and my limbic system to go off, so nauseous basketcase for days. So I’ve been cycling through options to suppress my crazed ovaries as I feel much better when levels are low and stable. My second progestin only pill I tried (Slynd) I overpowered after 1 month, now looking at low dose combo pills and maybe chem meno down the road? Sounds familiar!
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Crispy, thumbs up for Gupta. I did DNRS in 2017, which is similar, and still use somewhat automatically some of the CBT aspects to keep anxiety from going full bore limbic (though when I go nuts during estrogen peaks, nothing beside a benzo works). I know a lot of people who were served very well by Gupta! That’s really great you’re open to it because initially I thought the subtext of these programs was that symptoms were ‘all in my head’ which royally offended me. But it’s not.
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Apologies if I’m being overwhelming with posts/info. Just excited to connect.
Danger and Crispy, just one more layer I wanted to mention that’s helped me explain some of what’s going on. Could be a rabbit hole but have you looked into MTHFR SNPs? For example, some of my genetics, like slow COMT, slow MAO-A, compound heterozygous MTHFR have pretty profound effects - like poor estrogen clearance, which gums up the works and allows certain neurotransmitters to build up (dopamine, norepinephrine, epinephrine), which is why I go completely batshit when my body is flooded with estrogen. Not sure if it’s exactly the same for you but sounds like you both have some major mood effects you’re trying to sortout.
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Hey Tress
Well, yes, it absolutely does sound familiar. I can possibly help you work out the hormonal trials - as I've done them all. And I'm very interested in your MCAS and what you call your MCAS supports.
So firstly, yes, I have tried to supress for years. But nothing works now. I'm currently on 75mg desogestral, which I took all through my 30s with no issue - but 29 days ago I got a breakthrough bleed, triggering one of my worst months on record. And still going ...
Now. I did start at double dose desogestral in April. That supressed very well - low FSH and lh. But I was plummeted into agonising pain, like chem meno - so I can only assume too much supression, too fast. Now my FSH is sky high. So there is no supression.
However, I'm staying on it for the time being as it does stop ovulation. So it might just stop the massive peaks. ::)
Slynd I couldn't tolerate.
I tried practically every combined pill going about 5 years ago. I needed 30mg estradiol to help stabilise me. Felt pretty ill on the 20mg ones. But the 30mg triggered migraines and this awful nose pressure - which I suspect may be MCAS.
Now. My thoughts have moved on from all those old posts you've got on. I believed in estrogen dominance for years. I chased the estrogen (like you are doing now) but chem meno highlighted estrogen was not my issue. As plunging to the depths of no hormones brought on my worst symptoms. So for me, it's either the fluctuations or it's my nervous system reacting. I think both.
Then adding in hrt in chem meno just triggered the MCAS type issues. There was no hope.
So here I am. Still fluctuating. Still in hell.
So, could you tell me what your MCAS support is??? I have my specialist appointment in a few weeks. I did try ketotifen last year via my GP - it triggered massive nose pressure flares within 24 hours. It was really bad. So I stopped after a few weeks.
I'm liking Gupta. I am struggling to see how all my issues are nervous system. But I am under a Neurologist who has already told me the are. But he takes no account of my hormonal fluctuations. I figure doing Gupta is better than googling my life away.
I'm also about to start therapy for chronic illness and trauma. Because I'm no longer coping.
So. That's where I'm at. I'm no longer chasing the E levels. In fact, mine is a lot lower these days and I get a lot of night sweats and hot flushes, which ars new this year. But still my symptoms come the same. Especially this month. The bleed triggered it.
I still assume fluctuations. X
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Thank you - I haven't tried desogestral yet so maybe that's next on the list. The fluctuations feel rotten to me but they aren't as debilitating as you describe or as crazy-making as the estrogen peaks for me. Hopefully a little stabilization of nervous system/MCAS related things might take that effect down a few notches for you, then allowing you to parse what hormone state feels best?
So, fast drops give you agonizing pain? In the joints, muscles, or? Curious about that.
Adding any estrogen gives me migraines too, affects my vision, tinnitus, and exacerbates plenty of symptoms. Is the nose pressure you get just nose or potentially part of a sinus flaring? Are your ears affected?
For MCAS supports, it was a process. I had already done the nervous system retraining. Next was getting mast cell stabilizers on board, slowly. Beth always said that when the mast cells are really hyped, anything new can be interpreted as a threat...so she'd have us start on 'sprinkles' of supplements, for instance, to avoid setting them off. Ketotifen is one - bummer that didn't help! I found it a little helpful when my MCAS was more hyped. Cromolyn as well. Monteleukast had a mood effect for me but some folks like it. Then there are a literal ton of supplements. I can't say I felt effects from them individually but altogether they settled my MCAS down a lot. I have a long list I can share but some key ones are quercetin, periamine, baicalin. A lot of her patients, including me, had mold sensitivity as the core trigger, so at least some of the supports may not be relevant to you. More on the nervous system front, she was also into vagal nerve toning, which I've also found helpful.
About Gupta- I strongly agree that your/my issues are not 100% nervous system. I noticed with DNRS a tendency for them to overstate the program's powers...EVERYthing will go away if you just follow the routine, etc. Yeah, not true. But it resolved many things for me and I had at that time completely stalled in healing at all, hit rock bottom. It was hard, though, to cultivate a sense of calm and safety when literally my body and mind were falling apart! But, I eventually went to an in-person session with Annie Hopper and started to trust the process after meeting 'recovered' people who helped run the session and also watching some of my classmates improve before my eyes. I was slower to improve - took me about 6 months of faithful practice- but I was still having trouble avoiding mold. That sensitivity unfortunately has not gone away.
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Hey Tress
Desogestral 75mg, as standard. Is not strong enough to supress me. But yes, when I drop too fast either chem meno or 2x desogestral - agonising joint, back and neck pain. It's only just gone after 5 months on 1 desogestral. But I'm obviously fluctuating like crazy now.
I don't even know if it's the fluctuations that are making me feel so ill. But yes, after years of chasing E, I do now know it is not that for me. I don't think I actually have histamine issues. Histamine intolerance. But, I'm aware MCAS is a lot more than just histamine.
The reason I'm suspicious is the ketotifen at 1/4 of a 1mg triggered severe nose pressure overnight. And as I increased dose - it got so much worse. And I know there's a common paradoxical reaction to start with. But my Neurologist shot me down with this thinking. But I'm still suspicious, hence the expert shortly.
Sounds like you have more histamine issues.
Oh. And I take montelekast. Stops all asthma in me. Helps nothing else.
Not sure what my nose pressure is. Could well be sinuses. But all checks out fine with ENT. I even had a nose op due to all this. But that was just to remove polyps. There was nothing to see iny sinuses. This symptom has gone on years as I've tried all pills and hormones etc. Combined pills triggered it badly. My latest hrt trial triggered it. But it's not my worst symptom - by far.
Id love to hear what symptoms the DNRS program helped with? I know it's slow. I'm just starting the real retraining on Gupta this week. It's hard going.
Have you tried LDN? Some find it helps MCAS and other inflammatory issues.
Also - have you ever tried progesterone only? Like real bioidentical progesterone - utrogestan or compounded creams?
I spent years trying them. All trigger my stomach like hrt does. And, as I now know, estrogen is not my devil. But it is a well known treatment (outside of the UK) for estrogen dominance. I'm guessing you've tried?
X
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The DNRS helped with my sensitivity to all triggers (mold, chemicals, food, medications, and stuff I’m probably forgetting). At my worst, I developed multiple chemical sensitivity to the extent that I lived outside in an ice fishing tent for several months trying to stave off reactions. Full of fear and constantly overwhelmed emotionally. My HI started showing up then. I’d have these weird reactions, not always clear to what, when I’d feel extremely heavy, almost like I was underwater, or my legs would buckle. My digestion and circulation were affected, very very brain fogged, wired but tired. People in the class had a wide range of different systems and triggers. I felt like hot garbage constantly and was chasing around symptoms that seemed to come from all the different body systems (DNRS argues this is since it’s largely neuro hyper vigilance issue).
One hard thing I imagine Gupta has too was we were encouraged to get off message boards and not talk about our symptoms unless at the doctors. That was hard but critical, I think. Do you have access to an online group through the program? It really helped motivate and convince me to do the program fully!
That’s so great you don’t have HI. But you feel like your immune system is spicy? I’ve tried LDN a couple times, and will again, but it makes me feel really weird and i haven’t had the will to tough that out for more than a couple days on top of all the peri and MCAS stuff.
Yes bioidentical progesterone feels very good to me but doesn’t seem to help these huge estrogen spikes. I just took my first combo pill and hope I don’t go crazy…