Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Jobo on June 04, 2016, 07:39:19 PM
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I will try to keep this as brief as I can but am at my wits end!! I am post meno and have been for 4 years I am 46 years old. On recommendation of my doctor started HRT when I was 41/42 and am still battling to find the right combination. I feel let down by my doctors, I don't think they have the knowledge or experience to know what they are dealing with and every time I have an appointment they look at me like I am stupid and imagining things, but I know my own body and if something is making me ill it's obviously not right!! i.e. progesterone.
This forum has been my life line I wouldn't have been able to cope if it didn't exist, all the information, feedback and support has been tremendous and I have learnt so much I feel I know more about HRT than all the doctors in my surgery.
So far have tried pretty much every HRT combination, tablets patches continuous, combined nothing worked because of the progesterone side effects until I met with an older Male doctor who listened to me, provided me with lots of information, ordered blood tests, telephoned me and together we came up with Estradot Parches 75 and utrogesten days 1-25. He had never heard of it but I told him I had and a lot of people use it because it's the most natural of progesterone.
Everything was well for a good while until I started to bleed a few times. Strange thing was it always seemed to be around day 20. I ignored it for a while because I had already had 2 hysteroscopy and didn't fancy another! According to my doctor if you have not had a bleed for 2 years and have one it has to be treated serious! So I knew she would refer me again. I had a big bleed and began to worry therefore went back to docs; I waited for another hysteroscopy and saw the gyno, who to my disappointment didn't really seem to know a lot about HRT! She advised I have a Mirena fitted, that way the progesterone would be localised to the area, would last 4 years and I would only have to worry about Oestrogen. Wow I thought I've cracked it this is going to change my life!
I am now having second thoughts! It's been nearly 8 weeks, I am having light bleeds which I expected however I am having some strange feelings that are hard to explain. I find it very difficult to explain and all I can say is I come over all nervous, slightly confused a bit disorientated and I feel like I am going to collapse, it's not a dizzy feeling but like I am off balance, has anyone ever experienced this is? Lights also seem to hurt my eyes and when it has passed I feel extremely tired. Sometimes I feel I need to hold onto things and when I am driving have to pull over. I had a very similar experience when I was taking Femseven conti. Maybe it's not the progesterone at all?
Could it be Oestrogen I am lacking in or having too much of, how would I know without having a blood test? It's a very frightening feeling! but with this I am feeling a little more tired than usual my hair is really limp and although I don't have any hot flushes in the day, still get them during the night but am managing this. I feel really run down and not I have lost my sense of humour, don't want to go out! I am usually on the go all the time but everything is such an effort!
I would really really appreciate some advice or feedback, feeling a bit desperate! I have an appointment this week for a check on the Mirena but am considering asking for it to be removed and trying the utrogesten again. I was ok on this but just found it difficult to take because you have to take on an empty stomach and before bed sometimes I don't eat until late because of husband's working hours and I believe it makes you drowsy if taken earlier.
Please help, am I going mad?!
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Hi what/how much estrogen are you using alongside your mirena ?
If you are definitely post meno have you thought about livial if you decide to have mirena removed ?
Sorry to hear of your struggles . :-\
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Sorry to hear you feel awful. HORMONES >:(
Maybe a visit to Prof Studd to get good advice? If you do a 'search' you will see how other ladies have been helped. Sadly not many GPs are au fait with menopause :bang:
Browse round. Make notes! If you were affected by the progesterone part of HRT then perhaps stick with the Mirena and adjust the oestrogen? 'search' Mirena too.
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Jobo - welcome to MM. I had a premature meno like you and it is often very difficult to find an HRT that suits.
It sounds to me that you simply can't tolerate progesterone all the time - so a sequential regime might well be better to reduce the effects of progesterone. Having to put up with a monthly bleed is often better than taking progesterone all the time.
The Mirena can be a good option but there can be an initial few months when the progesterone does has some effect systemically so gives a few side effects e.g. dizziness and fatigue but this should wear off. 8 weeks isn't long enough to see if the Mirena is right for you so I would persevere for another 8 weeks at least.
The bleeding/spotting should stop over the next few weeks and your body will settle.
If in a couple of months you are still getting this dizziness then you could consider having it removed and trying an alternative. I have been trying Utrogestan and it gives me problems with bleeding and spotting and I got some nasty side effects as well. Utrogeston isn't as stable as the synthetic progesterones so not as effective at controlling bleeds. Have you tried Provera(Micronor) - this is a kinder synthetic progesterone which could be used either sequentially to reduce any side effects but this would involve a monthly bleed or use it continuously for a no bleed regime - you would oesrgogen as patch or gel alongside. DG x
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Thank you everyone
I am currently on Estradot 75, but I thought this was considered quite high, and wondered if this could be why I was having these strange feelings, but maybe not. I have heard alot of people on here use gel but not sure how that works I have noticed recently that the patch creases sometimes and the edges don't stick very well.
Dancing Girl, I will take your advice and persevere longer with the Mirena, I have heard of Provera and was recommended this one by one of the doctors but didn't want to take because of it being synthetic I assumed I would react the same as others I have tried, hence why I tried utrogeston. I also have continuous regime because of problems with having the monthly bleed regime, it would last a very long time sometimes for 3 weeks!
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Even though the Levonorgestrel is local, like our own local hormones, we still feel the effects. It also sounds as if your own hormones are still settling down which can take up to a few years post meno.
The symptoms you describe could be adrenaline rushes from the oestrogen levels plummeting at certain points in your cycle. If the progesterone is too strong it could make these more apparent so it would make sense to first try upping your oestrogen dose. If that doesn't work you could try the opposite, less oestrogen in case you're taking too much. If either doesn't help then it may be the Mirena you need to change for a different prog. Blood tests won't be of help as hormones in the blood fluctuate too much throughout the day to give any clear indication.
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Jobo
The gel - Oestrogel - might be worth trying. If the patches aren't' sticking that well and you feel you need to adjust your dosage of oestrogen , then the gel would be the way to go. You do have to apply it everyday but I have used it for many, many years and found it good because I can use the exact amount I need.
You apply to the gel usually to the inner thighs and 2 pumps per day is the average dose - so one pump of gel applied to each thigh either morning or evening. This would give you a consistent dose and might alleviate some of the effects you are feeling now. Dg x
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Thank you dangermouse and dancing girl your knowledge has helped, you could be right about the adrenaline rush the feelings/episodes I have are a little bit like, but not sure how that works because I thought the patch delivered the oestrogen to the blood stream constantly so how does it plummet? this is all so confusing. I may decide to go with the gel for a while that way I can adjust the levels which is an option I don't have with the gel.
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Your own hormones may be contributing?
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Yes it's your own hormones plummeting, as you can still feel that even on HRT when things are still volatile.
Our own hormones are very potent and as powerful as our blood pressure. Even the pill only controls mine to a degree.
Later when oestrogen settles to constantly low, you should find it easier to control with HRT.
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This is all beginning to make more sense now. Does this mean I could still be producing my own oestrogen ?
Thanks again
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If you are peri meno or in early post meno then your own hormones do still have an effect. This is why it can be good to start on a lower dose of oestrogen and then increase as needed as your own hormones drop. The peri stage can be the most tricky because of hormonal fluctuations but the Mirena can be brilliant as less progesterone is absorbed into the system and you can use as little or as much oestrogen as you need to keep everything balanced. The big plus of the Mirena is it's ability to keep the womb lining thin so less chance of problematic bleeding. If I were you, I'd definitely try the oestrogel and start with one-two pumps per day for 2-4 weeks and see how you feel. The patch may not be giving a consistent dose and 75mg may be too high for you. Keep persevering though as I believe things will settle for you. You are still young and need the oestrogen so try to be patient. DG x
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Thank you so much dancinggirl I am post meno and have been for 5 years so that's why I am so confused because I thought once post meno you don't produce any oestrogen? and I suppose frustrated because I've been trying for 4 years to get the right hrt!
I have heard a lot of good reports about the mirena and it does seem the best option for me but I feel it could be the oestrogen. I feel terrible today can't concentrate, terrible headache and these strange dizzy feelings. I will persevere! Am at doctors again Thursday so may ask for the gel.
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Take a list of symptoms with you ???
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Hi
All I can say is that I have the exact same symptoms - in fact when I find the link about mine, I'll forward it to you and we can compare notes!
I had it on the gel and I also get it on the patches too! My current doseage is 50 mg and have been on these for 12 days after a month on gel.
No idea what they are but they are very frightening. I had one this morning!
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Jobo - I do think the dizziness etc is due to the initial hit of progesterone from the Mirena and this should settle over the next few weeks - your body needs to settle after all that bleeding as well. DG xxx
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Keeping a mood/food diary might help chart symptoms?
:bighug:
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Thanks everyone never thought about a mood food and Mis71mum if you find the link please share with me. Let me know how you are getting on we need to share notes I'm convinced my doctor thinks I'm going mad !
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Erm embarrassingly I don't know how to do a link! Anyone?
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Looks like we are the same on that one too! :D no idea hopefully someone will come along to offer guidance.
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http://www.menopausematters.co.uk/forum/index.php/topic,31588.msg500950.html#msg500950
Hopefully this should be it - I couldn't do it on my phone but can on my PC.
Thanks
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Jobo, you have described exactly what was happening to me. We're all different, but increasing the estrogen significantly reduced these episodes for me. Which hrt dose and combo did you feel best on, even if there were issues? I think the other girls may be right in that you are taking an initial hit from the mirena. I know my doctors said the mirena doesn't affect anything except the womb, but my experience with it as a contraceptive says this is not true. I believe it affects everything in the body, just like any other. So, perhaps the mirena is offsetting the effects of the estrogen right now, so you're getting fluctuations as your body tries to find balance with it. I agree that you should stick with it for several weeks to see if the effects subside. Of course, if you begin to feel feverish or that something is terribly wrong, don't waste any time waiting it out.
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Hi lizab thanks for your reply I have tried that many I have lost track on what was best for me but think the utogesteron and the patch seemed the best but because of break through bleeding it was recommended I have the mirena. I will persevere for a few more weeks but it does feel a bit like an adrenaline rush so thought it maybe oestrogen levels. Not sure whether to increase oestrogen or start again in lower dose to see what happens or maybe use the gel so I can adjust l.
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Give it time. The up-take needs to settle alongside your hormones.
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Hi there, these hormones are confusing! I'm post but I think they are still up and down. Plus other things like gaining or losing weight make a difference as well. I've just lost a lot and everytime I lost some off my middle the night sweats returned. I guess for some maybe they never settle or maybe I'm not totally post, who knows!
Just recently I've had a bad couple of weeks with adrenaline surges at night, the weird head thing, my first experience of vertigo on waking and even being jittery during the day etc but I'm still not sure if it's too little or too much oestrogen! Today I woke up normal and it was soooo lovely and didn't have to get up during the night, woo hoo...maybe I'm having a normal level day :)
You would think with half the population being female and then a good proportion of them being 40+ and at a time of hormones going haywire then doctors would be better clued up!
I guess it's just a game of trial and error to find what combination suits you so hope you find it soon!
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>wave< but Trial and Error is SO tiring :-\
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The more fat tissue we have the more oestrogen we make, so this might be why weight loss is making your symptoms worse. So unfair eh!
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Hi wombat62 what you have described more or less how I feel when I get these episodes it is a bit like vertigo! I too had a day where I felt OK it was so lovely but like you I'm not sure if it's due to too much or too little oestrogen if you find out let me know. Thank you
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Jobo, the progestogen in Femseven is the same as the Mirena. As others have said, maybe after the initial hit, the symptoms will die down. If not, it may be the levonorgestrel that is the culprit.
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Hi Jobo
If you are definitely post-menopausal by 4-5 years then your hormones should not be fluctuating to such as extent that they give you these symptoms - oestrogen levels fall dramatically to a low level approx 2 years after last period although there is still some hormonal activity after this - but not anything like in peri-menopause!!
At your age 75 mcg is definitely not too high either and yes patches should give you a fairly stable dose of oestrogen.
By the way you do still produce oestrogen after menopause - it is an essential hormone after all - it is just produced elsewhere in the body.
The other thing is if you had premature menopause - or premature ovarian failure - then sometimes the cycle can resume spontaneously, although you should be getting signs of that if this is the case.
Re the utrogestan - you were using it on a conti basis and as Dancinggirl says it does not necessarily control bleeding so well on higher doses of oestrogen at the recommended dose which is 100 mg orally. Better control is achieved through vaginal use but of course you would not want to do this on a conti basis. I am wondering why you had such bleeding on cyclical utrogestan? Were you using 100 or 200 mg? It could have been that the lining had built up ( can't look at other page to see what you said!) and it would eventually settle. The dose should be 200 mg and you could always take for a couple of days longer for a few cycles to try to control the bleeding - was this suggested?
The side effects sound like they could be due to the systemic effects of the Mirena as others have said. This is why I wouldn't have one even though they are very efficient at delivering progestogen to the womb - because all my HRT has been bio-identical from the start (more or less!).
I wouldn't have thought you need to change from the patch if this is suiting you and you have felt well on this dose in the past?
Just a few thoughts :)
Do you also use vaginal oestrogen to keep things healthy there?
Hurdity x