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[Hurdity]

I appreciate my reference to the progesterone cream just 'poking at me' not being one of my better descriptions 

Haha -  nothing wrong with describing things in easy to understand language - but I just didn't know what you meant by "poking at me" at all!!! 

Hurdity x

[Hurdity]

Yes, this isn't really a scientific discussion, for the reasons that Crispy explains, there just isn't enough research into it.

Whether progesterone physically pushes excess oestrogen into the bowels or whether (and I suspect this) it's a more complex mechanism, the result is that progesterone can put a lid on oestrogen spikes. I'm using pedestrian language because the specific mechanism is not clear, only the result.

Like I just said to Crispychick - nothing wrong with using "pedestrian language" at all - in fact explaining difficult concepts in lay-women's language is great! However it still has to mean something and I didn't know what you meant at all - hence my question.

In terms of "Yes, this isn't really a scientific discussion," - of course it isn't an academic discussion  but it seems to me to be scientific - there are lots of references to papers, theories, blood tests, and the discussion is around specific hormones, receptors and all sorts - that is all by its very nature "scientific". From long experience of reading about all of this (not much recently though) some of what is written is just someone's theory but doesn't necessarily have any scientific basis - well no evidence to support it. Unfortunately there are sites and companies - mainly in US - where the health system is different - where practitioners make lots of money from the products sold as a result of their theories . In UK not so prevalent but some of the private unregulated clinics also do so.

Hurdity x

[Hurdity]

I agree dangermouse, this is not a scientific discussion.   I'm not interested in studies either which very often conflict with each other anyway.   

Remember the two disastrous HRT studies that were badly conducted and deeply flawed?  Those studies are responsible for making millions of womens' lives utterly miserable because they were (wrongly) terrified of taking HRT.  How ironic that one of those destructive studies was called million women study.

MaryG please see my reply to dangermouse - about whether the discussion is scientific or not.

"I'm not interested in studies either which very often conflict with each other anyway. "

Yikes! How sad.... If it wasn't for studies we probably would not be alive today cf vaccinations and treaments for disease! You wouldn't be able to take the HRT that you do. The whole of medicine is based on studies!  Yes studies do often conflict especially when one considers different populations - because there are so many variables and different assumptions and treatments. But there are many reviews which look at individual studies, sometimes combine them together, look at the assumptions, and try to come up with a better evidence based picture of what is happening. A great example of these are the Cochrane reviews.

Using the example of the flawed HRT study which did condemn many women to years of misery - is not a reason to discount all studies!

If you prefer to limit the basis of the discussion maybe start a private chat somewhere....

Personally I am interested in reading what is being said and understand the basis for it - and if I can, help if possible. We all want to feel better and to function as optimally as possible in our (hopefully) prolonged post-menopause years.

Hurdity x

[Marchlove]

So much for the Cochrane reviews....

https://blogs.bmj.com/bmjebmspotlight/2018/09/16/cochrane-a-sinking-ship/

[Uptick]

Hi CrispyChick, don’t be sorry, you haven’t misunderstood my post. It’s just that your question doesn’t have a straightforward reply, given the many variables that are at play when it comes to hormonal balance, it’s a dynamic process, it’s impossible to reach that sweet spot and stay on it forever. Many women have been on HRT for years just to find a return of symptoms, particularly those who still have their ovaries (they’re not entirely dead in menopausal women), and that is obvious when you see how oophorectomised women struggle to achieve the right oestrogen dose and even sometimes have to consider taking progesterone even though it’s not needed for the purpose of protecting their long gone womb, assuming they had a hysterectomy as well. Other women have to decrease the dose of HRT, it seems they don’t need high doses as they age, because sometimes high doses cannot control symptoms just as low doses, that’s a well known type of hormonal response called ‘an inverted U curve’, when you get the best results with a medium dose.  This is because sex hormones don’t exist just for the purpose of sexual developement and reproduction, they are involved in the regulation of many physiological and pathological processes. There are sex steroid hormone receptors all over the body, brain, breasts, ovaries, bones, blood vessels, you name it. Oestrogen is not only produced by ovaries, adrenal glands and fat tissue, but also by the stomach! So, depending on each particular case, the answer to your question will vary as much as the amount of symptoms that are possible in peri and menopause, because at the end of the day, the HRT mantra is ‘trial and error, because each woman is unique’.

That said, let’s analyse your particular case. You’re in perimenopause, so anything is possible regarding oestrogen levels, at any given time, while progesterone levels are steadily decreasing with time. The fact that you were on the pill and have tried many of them with no luck is a good indicator that you have a high sensitivity to sex hormone fluctuations. Moreover, all these attempts might have disturbed your hypothalamic-pituitary-adrenal (gonadal) axes. Your symptoms, particularly dizziness and nausea, point to a sensitivity to fluctuations. Brain fog and aches are very common in many other conditions, so they’re not very helpful here, unless they have a specific pattern that can be related to your menstrual cycle. I’d be interested to know the ‘etc’ as well (migraines?), because each and every symptom is important when you need to figure out if you need more or less oestrogen and progesterone (here, I’m assuming you are using ‘alternative progesterone’ because all the progestins and micronised progesterone have failed, as you said, because progestogens are only needed for womb protection on conventional HRT, but not on the alternative approaches). When you say the oestrogen part alone made you feel ‘poisoned’, I also would like you to be more specific about the symptoms, because high oestrogen from HRT preparations is not a problem in perimenopause when extremely high levels occur, but depending on your symptoms, it could mean you’re hypersensitive either to oestrogen itself (very rare) or more likely to its fluctuations. If that’s the case I’d say you are an allergic type of person, am I right?

As for the ‘alternative progesterone’, I just would like to make a short comment (thank the Lord, haha). Progesterone is a very unstable molecule when exposed to light, I suspect that is one of the reasons why there are no conventional progesterone patches available to date. So, I would favour the lozenges over the cream, because it’s possible that most of the progesterone will no longer be active when you expose the cream to light. I suppose each compounded pharmacy has its own formula to counteract this, but the added fillers might also contribute to trigger a hypersensitivy reaction on a predisposed person.

The low doses of progesterone ‘antagonising the oestrogen receptors and making your symptoms worse’ is possible, but unlikely, as an explanation for your symptoms, because the amount of progesterone absorbed wouldn’t reach most oestrogen receptors, given the short half life of progesterone before it’s metabolised.

So, tell me more about your never ending symptoms and how your periods behaved before the pill, if you had PMT, cramps, irritability, low mood, and so on.

Sorry for the late and long reply.

[Marchlove]

You’re an inspiration to us all Uptick and encourages me to keep reading and learning, even though I have no scientific background.
CrispyChick is in good hands with you and all of us with her on her voyage x

[CrispyChick]

Thanks folks. Really appreciate all the interest and help. 

I'll try and explain it all succinctly (try )

So... Back in the day never had any real problems. Always had light periods, a bit of endo pain each month, on and off pills all my life. 2 babies. Easy, straight forward pregnancies. Conceived very very easily. I did suffer anxiety after the births, which I now believe was hormonal. Not a migraine sufferer.

Hit 40. Stopped the mini pill (cerazette). I liked it because I didn't get any periods, but it left me a little flat and i often experienced periods of narkiness and paranoia. Very low libido. However, I only stopped because my husband forgot to pack my bag for a trip!!!

8 weeks later - immense brain fog and pmt descended. Like horrific. I was foggy, extremely grumpy and paranoid. Was awful. Seemed to last a good 2 weeks each month.

Agnus castus trial - 800mg of tablets - worked amazingly. No pmt etc... My libido went through the roof. Sadly I started getting extreme daily migraines, so I stopped cold turkey. Migraines stopped.

8 weeks later - the beginning of the hell I'm still in. 4 years ago now. I woke one day with extreme dizziness and nausea and just felt ill. I had vertigo. My ears felt full. I felt very very ill. Lost my appetite and lost weight.

Tests to date include:
CT scan
MRI
24 hour blood pressure monitor
Heart assessment - I forget the name. Ecg maybe.
Endoscopy (incl. Celiac test)
Vestibular rehabilitation
Nose camera
Awaiting nose surgery as I do have severe rhinitis and nose polyps.

Nothing ever found. Except my nose/sinus issue - but I've had that all my life - although it does play a big part now.

Yes. I have allergies - mainly hay-fever and asthma. Allergic to dogs and have oral allergy syndrome. I take fexofenadine every day and a steroid inhaler.

Restarted cerazette - although it helped a bit, I was suffering with really bad low moods on it, like pmt. And I was still woozy at times (no longer vertigo). Just never right. I would have long episodes of pmt and paranoia now. I also developed gastritis on it. Now resolved.

Then tried every combined pill under the sun. Interestingly, my first trial on the combined pill brought my initial vertigo and horrific symptoms back after 7 days... Then it calmed (the prog cream is doing the same). Some pills made me worse, some gave me other side affects, some made me feel very ill. I also now get migraines. I use triptans.
The combined pills caused my nose/sinus to flare - it feels fizzy and inflamed on the right side - and can lead to a migraine. Off all pills, it goes away.

Then came my trial of HRT. Tablets. Took estrogen for 2 weeks and I have never felt so ill. Poisoned, dizzy, sick, immense brain fog... Felt so so ill.

So, without any further help from my GP or NHS meno clinic I have resorted to a bhrt clinic for help. There I am told I have very low prog. I can understand that, as I've just recently started to have annovulatory cycles. Plus, I believe the years on the mini pill with the progestin may have lowered my own progesterone. I'm told my estrogen level is good for my age. Not high. But not low.

I was prescribed a very low dose micronised prog to start with. 25mg for 20 days in luteal phase. There was a bit of confusion, so I started on tablets.

First 5 days - horrific. Triggered my initial symptoms of dizziness, nausea, felt poisoned and vile. Ears full. Loss of appetite. Migraine. Then day 6 it flipped and I felt narky for the next 5 days, but the other symptoms calmed. Stopped for a period.

The next 12 days on nothing I was horrific. Like the early days. Then started 25mg cream for 20 days. No improvement.

Then 50mg cream for a whole month and I felt worse than ever. Then up to 150mg...where i've really suffered for the last 2 weeks - woozy, soaced out, nausea, vile, poisoned. Loss of appetite and on top of all the symptoms my nose/sinus has flared - leading to 1 migraine. Now dropped to 100mg.

Absorption of cream - there absolutely is. My mood is good and stable on any cream dosage (much more stable mood than on any pill) My period on 50mg cream was the lightest it had ever been and, for the first time with a natural period, I had absolutely no endo pain. I've not reached the period stage on the 100/150mg trial yet. Without a doubt I won't get a period unless I stop the cream and withdraw.

So there are good things about the cream - stable, better mood and pain free very light periods. But I'm still feeling awful with wooziness, nausea (like motion sickness - not stomsch nausea), fog and now my nose flare.

I find it interesting that the 25mg tablet switched 6 days in and all these symptoms went. Not experiencing that on the cream.

The narrative from the states is my dose is too low (Hurdity - this is not from websites selling prog cream, this is from real people in a group like this, trying to feel better - many seem to feel better on higher doses). My clinic say I shouldn't be feeling bad on low doses  but maybe the UK are just behind the states in their understanding 🤷‍♀️

I'm having bloods drawn this week to check absorption then I'll be going through all this with the clinic. I'm scared of higher doses, as my nose/sinus /migraine has flared at the 150mg.

Uptick - I take your point on cream and light and I'm also thinking a different route of absorption might be better...

Hurdity - as I've said before, I'd love nothing more than to get help for this on the NHS. Would 100mg utrogestan be a good fit? ... I don't know. I'm in Scotland - the fight for utrogestan with hrt is huge... Never mind trying to get it on it's own!!! Truthfully - I don't have the fight in me at the momement. But absolutely, this expensive regime I'm currently under only has one last chance before I jump off!!

Other info - no sweats or flushes (although one of the combined pills did give me mega night sweats). I actually think I'm sweating less overall since being on the P cream.

Had a pelvic scan before the bhrt clinic would treat me. All good. Thin endometrium. Ovaries all fine. Nothing to be seen. So, that's reassuring. Also thyroid all fine.

Any thoughts on that long saga??? Apologies to those that have heard it all before 

[Mary G]

Wow Uptick, that is one superb post, you really get it!   Every point you have made makes complete sense and I can relate to many of them.

The fact that the menopause is a constantly evolving situation makes it difficult to treat and I have found that I can't tolerate high doses of oestrogen now but fortunately I don't need it.  As we see time and time again on here, women find their HRT regime suddenly stops working so always be prepared to tweak your dose.

A doctor I saw recently admitted that the medical profession don't have all the answers to the complexities of hormones/menopause and I respected his honesty.

[Mary G]

Crispy, I have read your post and it sounds like many of us have the same underlying problem with different manifestations.   

At the beginning of your post you said you are not a migraine sufferer but later on you mention migraines.   This is significant because it could explain many of your symptoms like nausea, loss of appetite, low mood, dizziness, sinus problems, nasal drip, full ears, that very ill feeling.   Migraines do not always mean headaches, they are often silent.  It is very common to start having migraines at the onset of the menopause and they often go undiagnosed.   Sorry to burden you with yet more reading but please do read the work of Professor Anne MacGregor who is a hormonal migraine specialist.   

You mentioned that you got out of bed one day with nausea and full ears.  I would say that was the very beginning of peri menopause and I had a very similar experience myself aged 35 back in 1996.  I was on holiday in Portugal at the time and suddenly and developed mild nausea for absolutely no reason - I developed eye floaters shortly after that.  All tests came back clear, the doctor was baffled, same old story.  It went on for years and then in 2004 (aged 43) the silent migraines started - 30 minutes of visual disturbance but no headache.

I now know that the cause of all these symptoms is unstable hormones caused fluctuating oestrogen and depleting progesterone levels.   The question is how to treat it.   As I mentioned before, in early menopause a very high dose oestrogen works well and I followed this regime for a number of years but it's not sustainable long term and probably not an option in your particular case.   Certain contraceptive pills do a good job of overriding the cycle and cutting out oestrogen spikes and then the other option is smothering the oestrogen spikes with progesterone either by way of a pill, Utrogestan on the compounded route.   

As Uptick rightly points out, progesterone has a short half life so you may need to split the dose by 12 hours and even consider a different delivery method.  Why not discuss the progesterone drops with the doctor?  I find them to be excellent with no side effects at all.

If you want to try Utrogestan why not just buy it from an online pharmacy?   You can buy it over the counter and without a prescription in Spain.   

I have no idea if this is any help but I'm on half a pump of Oestrogel and I have gone back to 50mg progesterone from 25mg and I feel much better for it.   Thanks dangermouse!

Sorry this is such a nightmare for you and that it's so difficult to get proper help.   I know him you feel, I struggled for years and had to work most of it out for myself.

[Marchlove]

Hi CrispyChick

I confer with what Mary G says about the silent migraines and trying a different route from the cream.

My progesterone experience-
Utro 100mg (either vaginally or oral) severe nausea, allergies (itching and runny nose), felt like I was being poisoned. Mood good
Compounded cream - 25mg - same symptoms but not quite as bad. Mood not as good.
Lozenges 25mg - mouth ulcers and sore gums. No nausea
Same lozenges orally - no nausea or allergies. Mood good but felt short half life. So now take 25mg in morning and 25 mg at night. Best so far.

I expect Uptick will have further thoughts and advice. xx

[Mary G]

Hi CrispyChick

I confer with what Mary G says about the silent migraines and trying a different route from the cream.

My progesterone experience-
Utro 100mg (either vaginally or oral) severe nausea, allergies (itching and runny nose), felt like I was being poisoned. Mood good
Compounded cream - 25mg - same symptoms but not quite as bad. Mood not as good.
Lozenges 25mg - mouth ulcers and sore gums. No nausea
Same lozenges orally - no nausea or allergies. Mood good but felt short half life. So now take 25mg in morning and 25 mg at night. Best so far.

I expect Uptick will have further thoughts and advice. xx

Marchlove, our experiences have been very similar.  I really didn't get on with Utrogestan, it was vile!   The 100mg dose is too much in one hit and although the vaginal application was better, it was nowhere near as good as the progesterone lozenges/drops.  However, I suppose Crispy might as well try it and rule it out if nothing else.   Who knows, she may even like it.

Progesterone is very difficult to administer which is part of the problem.

[CrispyChick]

I do still have half a bottle of those 25mg capsules... I could try a quick hit of 4x and see.

I'm going to have my bloods on Thurs, first and foremost. I do think I need to try a different route. It'll all be put on the table at my consult in 2 weeks...I'm paying enough, so I'm hoping they have the expertise and have seen this before?!

I was chatting with a lady in my other group who didn't get on with the cream particularly well either, then she tried it vaginally (I'm not brave enough) and vola! She used it 3 months like that whilst waiting to see a hormone clinic and now has lozenges. It was an absorption issue - she did indeed need a bigger hit of prog!

I do split my dose. I know I need to do that as I've tried both ways. So I do half every 12 hours.

Thank you Mary - it's nice not feeling so alone  not that I'd wish this on anyone else. I will look into the silent migraine and Prog Macgregor this evening. Yes, I do now get headache migraines. Often my nose/sinus feels connected. I struggle to imagine the rest of it being migraine though, as its full time relentless... But, what do I know 🤷‍♀️

So, it does sound like you all have had to try different routes of micronised prog... I am certainly open to that. I am nervous of high doses on other routes though - as I'm sure you all remember my cry for help post a few weeks ago when my 150mg of cream spaced me out so so bad. 

Who do you see Marchlove? I know I attend the same clinic as Mary. X

[CrispyChick]

Actually, I'm going to add this - as it could be pertinent.

During my first pregnancy I fell ill with labyrinthitis. Well, that's what they chalked it up to. Horrific. Woke one morning feeling like I was on a roundabout after drinking 2 litres of vodka. I was 5 months.

Now, I experienced this again 6 months before everything started 4 years ago. I had a session of acupuncture. Next day - floored with so called labyrinthitis. I'll never touch accupuncture again.

So when this started 4 years ago - everyone, including myself, thought labyrinthitis, again. Only this time it never left... Although it morphed into other things and I no longer get vertigo. I'm very grateful for that. But note from my main post, my first trial of a low dose combined pill 2 years ago brought on vertigo...then it subsided.

Don't know if connected... 

[Mary G]

Oh buddha, not the labyrinthitis chestnut again.  This is a much favoured dumping ground for clueless doctors I'm afraid.  My mother was diagnosed with it but she was actually having a stroke.   She was dizzy (so much so, she kept falling over) vomiting and had a headache.  I knew the diagnosis was wrong, it was blindingly obvious.

In your case Crispy, it sounds like a hormonal migraine.  I have never been pregnant (through choice) but I wonder if I would had migraines had I ever been pregnant.   Menstrual, progesterone withdrawal, non aura migraines usually improve during pregnancy but oestrogen driven migraine with aura often becomes worse.

I'm now thinking you need to consult a hormonal migraine specialist too but first of all, please speak to the doctor at the clinic and give the pharmacist a call, she is very knowledgeable.

Sorry to state the obvious but you need hormone stability and fast.  In peri menopause, that either means very high oestrogen or very high progesterone to override the cycle and crush the spikes.

[CrispyChick]

Oh geez. I hope your mum was OK after that bad diagnosis. 

Yes, it very much has felt like a diagnosis thrown at me when nothing else fits. I've often wondered if it was connected. It did last a few weeks though, so it did seem to fit the labyrinthitis diagnosis at the time. Didn't experience anything like it second time around - although I was very nauseaous, so much more text book.

It was that early diagnosis at the start of this mess that led me to pay for vestibular rehabilitation. As interesting as it was, I don't think it helped.

I've not really wavered from this idea either Mary - I too think I'm having hormonal spikes and I think higher dose prog might be my cure - it's certainly what they talk about over in the US. I'm dissapointed to be feeling a lot worse than before I started the prog. But, from what you ladies have experienced, dose is everything.

I did think about calling the pharmacist. I guess they might have seen this before...