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[CrispyChick]

Hi All

This is very niche. But I think I've finally discovered my problem.

After almost 8 years of hell, spending thousands of pounds on bhrt clinics and now private specialist meno gynae - I've worked it out for myself.

It's not my hormones themselves causing me issue. Nor their levels. Admittedly the swings of peri are causing me huge issues now with mood and anxiety. Classic stuff.

But it's my body's hypersensitivity to hormones causing me to feel deathly vile and poisioned. This has gone on and on and noone has been able to help me. I decided it was my estrogen. It is not. It is simply any change either natural or add in/take away. Because yes, this all happens with the addition of hormones (Either E or P) or their removal. It's the same symptoms.

For example - trying the pill now causes this. Stopping the pill now causes this. Adding in natural prog causes this. Taking it away causes this. Adding in extra E causes this. Removing E causes this.

I'm at a loss. It's my worst symptoms. I literally feel like death and like I'm in some sort of steroid withdrawl.

On nothing this is happening every month, all through the month as I'm now deep in peri. But adding in/removing hormones makes it even more severe.

Who can help me? An endocrinologist??? I was refused to be referred a few years ago. I always knew these feelings were not 'normal' peri. But I've never been believed.

I've finally proven it. But I don't know what to do.

I know there are a few of you out there with sensitivity issues. Hopefully you respond. Thanks xxx

[Kathleen]

Hello CrispyChick

I completely understand where you are coming from and it does seem likely that you are especially sensitive to hormonal changes.

I think seeing an Endocrinologist is a good idea but you may have to arrange this privately. I believe that the private hospitals have Endo Consultants available so perhaps approach them? Also Wrensong here on the forum has seen private Endos for her thyroid treatment so maybe she has some advice for you.

I think there are a few of us on the forum who have been struggling for years. Unusually I didn't have much trouble during peri, my problems really kicked in when I was post meno. It has now been fourteen years since my last period and almost all my physical symptoms have resolved although I am on a medium dose of  HRT which is obviously making a difference. My issues are mood changes that dominate most of my day. The 'ups' are lovely but the 'downs' are not.  It's a rollercoaster ride that I would love to come off.

I hope you make some progress soon and I wish you well.

Take care and sending hugs.

K.

[Emmia49]

Hi CrispyChick!

I want to let you know that you are definitely not alone.

I also have the same problem, whatever I do with hormones - add or take - everything just gets worse and worse....
A true vicious circle!!! I miss my life I miss myself…

I don't understand how nature can be so cruel to some women…

Feelings of anxiety, depression, mood swings are just not normal for me. It shouldn't be like that.

If someone had told me years ago that this would be the case, I would never have believed it. Depression and anxiety just out of nowhere? I hate this!

I quit my job that I loved, I used to love running, but I don't enjoy it anymore, it just makes me more tired...

So how can I tell you something encouraging?
 
Well, after 6 months of complete darkness, when I couldn't even get out of bed, when I was crippled by insomnia and non-stop hot flushes, I'm a little better today.

I attend professional acupuncture, homeopathy, psychotherapy, I take quality natural supplements and I am on a medium dose of AD.
Hormones? No thank you, not ready for that minefield!

Still in perimenopause, every month literally throws me back and forth, but I also have very good days and even a week or so is good…
Don't give up, everything ends one day, even this hell.

Try good acupuncture and please: never, never, never give up!!!
We are here to help each other so you know you are not alone!
Sending you a big hug!

Emmi

[bombsh3ll]

Did you get anywhere with a trial of chemical menopause?

That does sound like a really rough situation to be in.

Hopefully things will improve for you once you actually enter menopause and things flatten out for you at a consistent low level.

I wish I could say I thought an endocrinologist would be likely to help you, however within the NHS at least I can't see this being a good use of your time and energy.

The only place I can possibly suggest that I have indirect knowledge of but no personal experience is the late Professor Studd's clinic in London. It is still being run by doctors who trained under prof Studd and they deal with the severist of cases relating to hormone issues that the NHS has washed their hands of.

[dangermouse]

Being similar to you, which we’ve discussed before, I believe it could be because whenever hormones metabolise they have to travel through the bowels. Any slow transit can make you reabsorb what is dumped - potentially oestrone.

Adding anything in will always displace more hormones and create a larger dump, followed by reabsorbtion, like a vicious circle.

Clearing the bowels using oxygen magnesium’s can help but also come with their own side effects but can be used maybe once a week. Liver supplements can sometimes add to the burden as other chemicals are dumped into the bowels so keeping it simple is best.

As sex hormones switch to higher production in the adrenal glands, ensuring no fasting to trigger ketosis, will take pressure off of the cortisol cycle, may also help.

Just some thoughts, based on my own experiences.

[CrispyChick]

Thank you all ladies.

I don't actually know how to keep fighting now  .

I'm nearly 6 weeks into chemical menopause (the first month having been absolutely brutal on my mood - as expected) and my worst symptoms of vile, steroidy, extreme motion sickness and dizziness have now appeared, getting stronger and stronger every day.

So today I feel like I did before I started cm.

So that's how I've confirmed it's not high E. I tested my E 10 ago at the 1 month mark and, as text book, all hormones had gone.

So it seems my severe symptoms are not high E. Is my body still adapting to this massive drop? Possibly.

But given the mini pill brought this on badly in Feb and it never left until I stopped (then cane back with my cycle) - I've kind of given up today. 

I can see no way forward.
I can see no escape from these awful symptoms.

I have stopped work.
I can barely parent.
I am literally stuck on my sofa.

I've spent thousands on a bhrt clinic and now a private gynae and it seems there really is no escape for me. 

I've lost my fight today. I'm so done. 8 years this has plagued me.

I think this is more than hormones. I think there is something seriously rattled in my nervous system or immune system, which is affected with these hormonal changes.  But noone seems able to help me.

I'm feeling quite despondent today now I've realised even the f***** menopause won't save me. 

[Wrensong]

Hello CrispyChick, I'm so sorry you've been having the most awful time of it & for so long.  Like you, I found perimenopause the most unimaginably difficult time & for various reasons went for a decade without HRT (inc 3 yrs postmeno), longing for hormonal stability to bring an end to symptoms I found very challenging to say the least.  It can be a marathon of endurance & I really feel for you.  You could well be close to the end of peri & things do eventually get easier in some ways postmeno for many of us (me included), so please don't give up hope of feeling better.

I'm afraid I'm not sure an Endocrinologist would be the right person to help in your circumstances, unless you have another endocrine disorder or strong suspicion of one e.g. thyroid, pituitary, adrenal disease.  As Kathleen says, I have been seeing a good Endocrinologist for some years who's helped with HRT, but I was initially referred because I also have a less usual form of hypothyroidism & another endocrine issue not usually managed by GPs.

I'm sorry I have no personal knowledge of a suitable medic if you've done the rounds of menopause specialists, but bombsh3ll's suggestion of the Studd Clinic seems worth considering if you have the means.

I also agree with dangermouse on the value of tackling any slow transit if this is an issue for you. 

If you can also prioritise R&R this is what I did to help my body cope in a situation in which I felt otherwise powerless.  Learning to meditate & setting aside time for this every day together with regular walking, both formed part of this for me & I did find that helpful.

This feels a pretty feeble offering, so I hope others will be along with something you feel worth pursuing.

Sending a hug.
Wx

P.S. I see you've posted again while I was typing this; I was unaware you are in chemical menopause, so apologies for anything irrelevant in my post.

[bombsh3ll]

I am so sorry you are dealing with this.

I know you have already been through the mill with trying this that and the other, but what about now that you are shut down, adding back in a stable low dose of estrogen eg with a patch?

You could do this for a few weeks as a trial without worrying about endometrial protection.

There's also the possibility of tibolone - this isn't usually recommended until menopause is reached however chemical menopause still counts so it might be worth a try whilst you are shut down.

The only reason it isn't usually recommended in peri is bleed pattern, which I am sure is the least of your concerns.

I really do hope you manage to find something that helps you feel better.

[CrispyChick]

Thank you.

My gynae has prescribed evorel conti to start when I wish. But I'm not yet feeling any low E symptoms and, I do think my system is massively jangled with the changes (for want of a better term).

So, given my history of everything causing this reaction, I'm not keen to add hrt into the mix yet.

Yes. Tibolone another option. She said it's most linked to migraines, hence not starting there.

I'm just absolutely astounded that my horrific symptoms have reared badly once I've shut down. It's bizarre.

In saying that, my hormones might have depleted, but my body has not yet accepted it as I'm still getting some of the daily groundhog symptoms that were caused by the initial surge 6 weeks ago. So there is definitely a lag in feeling the shut down.

But it doesn't explain why my horrific vile and motion sickness has been building. So done with it all. But I was basically in this same place before trying CM.  plus more classic peri symptoms on top. Mood and anxiety were bad.

I do appreciate anything you ladies can throw at me. 

If this doesn't work then I plan to go nothing and add in AD to at least deal with the moods and anxiety. But nothing seems to help my physical reactions. 

[dangermouse]

So sorry you’re in an even worse way. Don’t equate this to post meno though as the early post meno is just more of the same volatility (but without enough progesterone to have periods) and the latter is likely when things start to calm down, I’m thinking late 50s at the earliest for me.

I just looked up the chemical menopause and it says that the drug stops the brain from communicating with the ovaries, which then reduces their activity. Could it be that this then puts even more pressure on the adrenal glands to produce oestrogen by awakening more of those receptors?

Nausea is usually oestrogen going up in my experience.

I did try Tibolone but it made me incredibly nauseous after about 4 days so had to stop. Saying that, I did also have a worsening 8 years ago with the combined pill for the first week but then it did calm everything down and allow me to eat again as I had lost 2 stone through unbearable nausea. Symptoms broke through a few months later but it was never as intense.

I still think that prog is the only option at this time but as it dumps so much oestrogen you have to really keep on top of it all clearing out. Considering giving it another chance myself as being on nothing makes me feel so lethargic from the oestrogen dominance.

[ElkWarning]

Have you been tested for mast cell activation syndrome?

[Kathleen]

Hello again ladies.

CrispyChick -  I think your idea of an AD is a good one. Many women decide against HRT but find that an AD is enough to help them with their symptoms.

ElkWarning -  I read up on MCAS a while ago as I occasionally get hot, red and itchy patches of skin that appear for a short time and then resolve.   I need to do some more research but I wonder if this could be due to  MCAS in your opinion?  Many thanks.

Wishing you both well ladies and take care.

K.

[CrispyChick]

Elkwarning. I don't know his to get tested for that???

I've raised it with my GP before but never got anywhere. Also, I'm not sure there's any treatment for it??? I'm already on strong daily antihistamines.

These hormonal reactions for me do not affect my skin. They affect my head (motion sickness, dizzy, vile) or my stomach. (Extene pain - nothing ever found) Or my nose - nothing to be seen on scans.

Thanks Kathleen. It's defo my next port of call if this drastic action fails.  . But I did try AD 7 years ago when my GP tried to convince me these physical symptoms were anxiety! They do nothing for my motion sickness and poision. 😞

[CrispyChick]

Elkwarning - I've messaged you. As I note you were the person that told me to look at immunotherapy before.

That's where all this seems to be leading me, especially as I've now brutally removed all my hormones and am having a massive reaction.

But no immunotherapy in Scotland. 

[ElkWarning]

Sorry, I don't respond to messages - it's a me thing, don't take it personally.

The reason I mention mast cell activation is because this is where we're heading with my daughter, who was referred by a doctor (NHS) to a private lab that provide two different pathways for investigation.  The first is COVID (her), but I was intrigued by the second (Peri/menopause).

She saw the same immunologist that I did a few years ago.  We both ended up there due to various issues including digestive and mood (in her case diagnosed as PMDD, in my case diagnosed as menstrual psychosis).

It would be lovely if we could just recognise symptoms and find diagnoses based on what we have in common with others whose symptoms are similar, but I'm not a doctor, and I don't have access to lab-based diagnostics.  It's worrying though, that you have no immunology in Scotland, like especially given that COVID was an actual thing with proven long term effects.

BW