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[joziel]

Pippa, that's great. I will do that. When they say 'morning and evening' to take it, do they mean like - waking up and 11pm?? Or 10am and 8pm...? Or it doesn't really matter as long as I'm consistent?

I think I'm also not supposed to do it within 1hr (?) of working out...

[Pippa52]

Pippa, that's great. I will do that. When they say 'morning and evening' to take it, do they mean like - waking up and 11pm?? Or 10am and 8pm...? Or it doesn't really matter as long as I'm consistent?

I think I'm also not supposed to do it within 1hr (?) of working out...

I did it at pretty much the same time each day am and pm and no defo not too soon after working out they want a resting BP reading xx

[joziel]

Ok thanks. I'm going to start this in the morning    Before the workout 

I am feeling better this afternoon, less throbby. I feel like I could basically give you an estimated blood pressure reading just by how I feel.    Not sure the GP will accept that though 

I might do several weeks of this whilst I wait for my referral to come through. Because perhaps it is going to drop gradually over the coming weeks and just doing it one week now won't reflect that...

[Pippa52]

Joziel … it’s certainly won’t hurt to do it for longer longer than a week it will give the doctor a really clear idea of what has been going on x

[joziel]

Arrggg.

Not any better yet.

I might have to try stopping utrogestan and switching to desogestrel for a week to see if that helps….just to rule it out. If not, I can switch back… I was on it for 9 years with no probs like these….🤔

Or I could just stop everything. I might get some endo pains but I doubt anything bad in two weeks.

It’s getting worse if anything and I’m starting to get really worried.

[Pippa52]

Arrggg.

Not any better yet.

I might have to try stopping utrogestan and switching to desogestrel for a week to see if that helps….just to rule it out. If not, I can switch back… I was on it for 9 years with no probs like these….🤔

Or I could just stop everything. I might get some endo pains but I doubt anything bad in two weeks.

It’s getting worse if anything and I’m starting to get really worried.

If it’s any consolation I’ve just had an awful night with precious little sleep. Anxiety off the scale for no reason . That being said I know nothing awful going on which is huge relief but the symptoms are hard to deal with. I am aware I’ve only been on the dose I am with the oestrogen for one week so it’s very early days and I appreciate early days after months of change of types and dose but jeeeez it’s hard coping with it all sometimes isn’t it. So very sorry to see you are still struggling to. I was listening to the Calm app for anxiety most of the night and it kept repeating that all the symptoms will eventually pass and I’m sure they will for both you and I but it just seems endless at the moment. x

[joziel]

Mine just seem to be constant now. I’m so sorry Pippa that you are still dealing if with this. It is all very rubbish. I just want my life back now. I feel like I’m not an emergency enough to be at A&E but I get worried that’s where I’m going to end up soon….

I’ve decided to investigate the idea of the utrogestan causing this. I’ve been okay with POPs before but perhaps that’s because the dose is so tiny (mcg compared to mg of utrogestan) or perhaps it’s due to the fact they work differently chemically to real progesterone.

And also I was okay not on anything for 5yrs without these symptoms (with my own progesterone) but your body doesn’t constantly make high amounts of progesterone throughout the month. So perhaps I recovered when levels change. I didn’t have these symptoms the first couple weeks on HRT after all. And. I wouldn’t have made any progesterone during anovulatory cycles.

I feel like the dose I am on at the moment must be a dose which mimics pregnancy really to suppress my ovaries and stop endo (200mg continuous) - and look at my gran and all her miscarriages during pregnancy due to high blood pressure. Which I was told wasn’t pre-eclampsia but “something else”.

SO I have about 24hrs to decide if I should stop everything for a couple weeks or if I should switch to desogestrel….?

OPTIONS.

Thoughts?!?

If I stop everything my ovaries will wake up some again and I may bleed or my uterine lining might thicken (it’s very thin at the mo after 9years on desogestrel).  I may also get my old familiar endo twinges back which are very manageable now I know what they are. But hopefully over 2 weeks it would be ok. Then I’d need to decide what to do, if the blood pressure resolved. I do like the idea of being natural as possible and I don’t like the idea of synthetic progestins… I have over-hauled my diet and added in all the Lara Briden recommended supplements to treat endo. But I’m the sort of person who might end up with heavy clotty peri bleeds.

If I go back on desogestrel nothing exciting will happen. It is a progestin but I was on it for 9 years without these blood pressure symptoms. I won’t bleed or have endo symptoms. But it’s not a long term solution for me because it suppresses my estrogen too much, kills my sex drive and gives me migraines.

Neither of these need to be long term options but to trial the idea of this being caused by utrogestan…

After that I don’t know what I do if it’s the utrogestan… 🤷‍♀️ But maybe that’s another thing to talk about then.

[Marchlove]

I’m so sorry to hear Pippa and joziel that you are both still having such an awful time.

I think Joziel that you’ve been off the patch for long enough now that it certainly could be the Utrogestan that is causing these issues. It seems that for whatever reason your body does not tolerate it.

Many are in the same situation, not specifically for it potentially causing high blood pressure, but nether the less you need to rule it out as being the cause.

I can’t advise on whether you should stop everything of carry on with the desogestrel, it’s such a personal choice. Hopefully whatever you decide will get you to a better place than where you are now xx

[joziel]

Well morning blood pressure today was only 112/76 

What’s going on….?

Now really not sure what to do. 

Will see what it is later.

Maybe the issue is more my heart and the ectopic beats than my BP 🤷‍♀️

[Pippa52]

joziel - that's such a good and reassuring sign.  It means you don't have constant high BP - just like the Consultant I saw said.  I honestly would take a lot of comfort from that.  My symptoms are still utterly crap yesterday evening and last night but it really does help knowing it's not BP or heart related.  I know it doesn't help with the symptoms you are having to live with right now but it is a very good sign I honestly do feel.  Re your concerns re your heart.  Maybe try taking another Kardia reading both when you feel your symptoms are at their worst and also at any point if they feel a bit better so that can be compared and shown to your specialist at your appointment?  That way you have all the info to give him straight away. xx

Marchlove - thank you for your kind and lovely messages bless you.  So sweet of you to message us x

In desperation in the wee small hours I ordered a Medcheck finger blood test as I really want to know just where my oestrogen level is at right now.  At least it would give me some sort of guide.  Will wait for another week or so before doing it anyway but just need to know if I am heading in the right direction at least level wise even though it's the symptoms that I need to go by I will at least get a rough idea of what is going on oestrogen wise anyway. xx

[Gnatty]

Pippa not sleeping is so awful for anxiety and of course these temperatures make it worse. If it were me, whilst waiting for everything to settle I would be looking to take something at bedtime to help sleep just to take away the anxiety of will I or won't I sleep. So maybe a heavy duty antihistamine or a good load of valerian etc whatever works for you. Another option might be CBD oil. I have melatonin from my GP which I take every now and then which is useful.

[Pippa52]

Gnatty.... thanks so much for your lovely message.  xx I am going to use some lavender oil on my pillow tonight and I also have a lavendar candle I will light. I love lavender and do find it soothing.   I've been a muppet not to have done it before.  I also have some night rescue remedy I will try and failing that some Kalm tablets which I think contain valerian. I do find the Calm and Headspace apps helpful and in normal times that would send me straight off to sleep.  The consultant is referring me for some CBT as well.  I'm not keen to take strong medication to be honest if I can avoid it so we agreed to hold fire on that for now. Thanks again for your kind message.  This site is full of such lovely kind people like yourself x

[joziel]

Pippa, did the consultant say how long to wait and expect things to get better? I mean, 'if things are still like this in X months, we'll have to revisit' etc etc?

I think I am going to hold off on any progesterone changes now, after this normal BP reading and feeling less throbby today. I'm sure the estrogen was out of my system 6 hrs after I took the patch off, but I think the systemic things it sets in motion don't stop or change so quickly maybe. I know it always took a week after an increase before i knew the full effects so maybe a week after taking the patch off will be a better measure...

The other thing I find really works Pippa, not sure if you want to try it, is exercise. There is something about raising the heart rate in a 'good' way which means that it kind of resets itself when it comes back down. I always feel very rested and still and calm about 30mins after exercise. I hope this state lasts(!). Don't do it too near to bedtime though, as you want time to relax before bed.

And also - electrolytes. Which are really important for hearts functioning properly. One thing that occurred to me, is that we distill our water - which strips everything out of it, all the toxins and pesticides but also all the electrolytes. We did try to put the minerals back in the water after distilling it, but we just hate the taste(!!) so we stopped doing that. So last night before bed I had a glass of water with some electrolytes in - and I just did after my workout too. Just in case there is some kind of electrolyte imbalance thing going on here - that can cause palpitations and heart arrhythmia. The only thing is they taste yuck...

Edited to add: Today has been an interesting day. After waking up with no palps and okay blood pressure, everything was lovely until about 2pm, then I had some off-and on periods of palps/throbbing and no palps/throbbing until about 7pm. Now everything okay again. When it is okay it is BLISSFUL. Just so peaceful and relaxed and my whole back (which feels like there is something on it) is stilled and calm. I could almost cry, just to feel normal. I am trying to be hopeful that the effect of the estrogen (?) is wearing off, but rather than stopping suddenly it is going to be more gradual. As it takes about a week for me to see the effect of a patch increase, maybe it will take up to a week to feel normal again. That will be Wednesday....

Pippa, I hope you have a good night. If you're anything like me you are coming to dread night times. I so used to like going to bed and getting nice sleep. I hope I can get back there again...

[Pippa52]

joziel - he is reviewing me in a month's time but the way I've felt today it seems a lifetime away.  Losing the will to live right now (not literally!).  I would love to exercise but unfortunately I have fibromyalgia and due to feeling so rubbish for the past 4/5 months I've just not even been walking my dogs even. mu Husband has kindly taken over that task but I really miss it although its been way too hot the last week to walk them anyway.   As soon as I am on the mend i will be back out there- can't wait. We have a filter on our water tap too as water here is beyond disgusting but I have drunk water straight from the tap today -  I'll try anything Really pleased you have had some good episodes today - that sounds very promising.  Maybe as you say no oestrogen is really starting to kick in.  I so hope you get more and more of them.  Yes I totally dread and hate the nights which of course just compounds everything.  I have some Bach Rescue Night Remedy I will take tonight plus lavender on my pillow and a lavender candle!  I have actually just put up a post asking ladies for their experiences and input as to whether my symptoms are from too high or too low oestrogen.  I know they can be similar and I have read in several places that the latest batches of Oestrogel are quite a lot weaker as has been noticed by quite a few ladies who are on it.  Knowledge is power as they say.  I am getting all the symptoms I had last year when I first cut right down on dosage as I was running out of Oestrogel - it is just so difficult to know as both high and low seem to be quite similar.  Anyway hope so much you continue to improve and that you have some good sleep tonight.  It's so hot here and that doesn't helpxx

[joziel]

Yes Pippa I totally agree. I am now psyching myself up for my evening blood pressure check  Question is, will it reflect the fact that I feel better?

Then there comes the challenge of going to bed and whether I'll be able to sleep.

As for the high or low thing... If you get really stuck, you could go cold turkey, stop all estrogen. Accept that it will be horrible but at least you will learn what that is like. Then start with 1 squirt, wait and see how that feels... and so on.

Assuming I get over this, I've no idea what I'm going to do when I actually need estrogen - I am just hoping that is 10 years away and HRT will be light years into the future by then, with tailor-made plans that imitate our natural fluctuations or something - or at least doctors who understand the problems I have with it   

I will firstly do about 3x blood tests to be sure I actually need it  because, unlike most people, I clearly can't just go by symptoms and start this when I might not need it, this experiment proves that    Then I will have to have a quarter of a 25 patch or something ridiculous for 12 weeks - to see if I can tolerate that. And all the time I might feel crap and will just have to accept that. And then increase another quarter. (This is if I do patches - the good thing about patches is I can be more precise. But perhaps patches don't suit me...). And at the first whiff of these symptoms happening, I will reduce back down - instead of listening to doctors who tell me to keep taking it and I'll get used to it. I will have to accept that I probably won't get higher than a 25 patch maybe, but if I can tolerate ANY estrogen, it's going to be good for my future health, even if it's not a lot. I tell myself I will still have progesterone and testosterone and that makes me feel better.