Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: CherryC on October 05, 2016, 07:46:49 AM
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Hello all, I have been on Tibolone for 8 weeks now (switched from Ostrogel/Provera/Test etc). Loving the effect on the libido but...I am feeling very sluggish, tired, slightly spacey. I am wondering whether to continue or not. Would love to but don't think I can cope with the sluggishness if it is an on-going symptom. Might it settle down after another month or two? Would love to hear other people's experiences with taking Tibolone/Livial, good and bad. Anyone finding it good and been on it long term?
Thanks! Cherry
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Apart from breaking out in awful spots (prone to acne anyway) I felt really good on Tibolone. I'm sure things will settle. DG x
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I am interested in learning more about this as it seems the only thing my surgery will consider for my low libido, but the energy thing is worrying, I've got zero energy already, plus I've read about hair loss on it, I can't afford to lose any more x
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Hi CherryC I switched to this nearly 3 months ago now as I'd reached 52 and my GP agreed my bloods were post menopause. I was previously on evorel and utrogestan, the evorel was brilliant but I was ill every time I had a period. I believe it was a physiological response to the fluctuations in my regime and I neeed to stop having periods. Pros of tibolone have been: no periods (hence no ups and downs), steadier mood and increased libido. I haven't had spots (which testosterone did give me). Cons have been: slight weight gain (upsetting) and the spacey sluggish feeling you describe, funnily enough this only lasts the morning then wears off. To combat this I have reduced my dose to half a tablet and it's doing the trick, also my energy is good. I feel as though a whole tablet builds up in my system and is too much for me. Finally I feel no hrt is perfect but on balance (and given I don't want periods) this as good as it gets. Hope this helps x
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Hi Peri, thanks for your helpful reply. Sounds like you have had a very similar experience to me. I did wonder about reducing it to half (or perhaps switching to take the tablet in the evening) and will speak to the consultant when I have a review shortly. You could be right, perhaps a whole tablet builds up as there were 2 or 3 weeks early on when I didn't have this. Or maybe it will settle down after a bit longer as Dancinggirl suggests. Do you find your mood and libido are as good on the half tablet? x
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Hi Annie0710, it definitely has an impact on libido (I would say after about 4 weeks). I had read somewhere else that some people find it good for energy, but I have not found that yet. Hopefully it is still to come! Or as suggested, I may be better on half a tablet. Will let you know if and when there is a change on the energy front. (Haven't noticed any hair loss but it has only been a couple of months for me so far). Hope you manage to get things sorted x
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Thanks DG, hope will settle soon too. If I stick with it, will report on developments. x
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Thanks Cherry, hope it works out for you x
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Hi CherryC mood is definitely better. I used cry (or feel like crying) for several days a month around the time of my period, now I feel much stronger. I think tibolone is very good for anxiety. Re libido that is better also (response not drive), maybe it would be even better on a whole tablet but it's all a balancing act isn't it x Also Annie I haven't had any hair loss just a bit of weight gain (progesterone element I fear) which I hope to tackle with exercise x
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Thank you ladies. I just worry as I already have hair thinning/shedding/loss and am scared of it getting worse. I'm in the throws of being referred to a gynae to fight for a trial of testosterone as hair loss is a symptom of deficiency (I have every symptom) x
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cherry C how are you going with tibolone as I am peri and taking half tablet for past 3 weeks and had a real bad spell near my period days. My biggest problem is that I suffer from nausea, anxiety and low mood. Having stones in gall bladder also. Could you please let me know how things are progressing with you.
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Hi Pam, sorry for the delay, I have just seen your message. Well it has now been 5 months for me on Tibolone. My findings have been as follows: the tiredness and sluggishness I first experienced have improved: Libido is still good: anxiety is much improved. However, I was also feeling much more emotional/tearful and quite flat in mood. I spoke to the consultant about this and she suggested I add in Testim (testosterone gel) to see if that helped (she said it would enhance the testosterone part of Tibolone). I have been doing this for about 3 weeks now and definitely feel much better in mood, confidence and a bit more get up and go. I hope that helps but if you have any other specific questions, please ask. I feel I am still weighing things up myself. I hope you are feeling better. x
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thanks Cherry for the information you have shared. Are you peri or post menopausal? I am also thinking of continuing or not after 3 weeks. Week 3 has knocked me badly as with cramps gastro nausea etc. Anxiety has not settled well much as I have these problems this week. I am peri menopause so don't know if tibilone suits me firstly ( doubting it) then should I increase the dose from half to full or not and what time. I will ask the doctor about testosterone gel next week. So to cut it short I think I have to decide what to do as it will be depending on how my body reacts to this all. Atleast by sharing I have better idea before deciding anything. thanks once again and will let you know what path I take.
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CherryC - Wow I am still puzzled - about adding Testosterone gel to Tibolone. :-\ You are the second woman on here to report this recently! I wonder if you see the same consultant? I am glad you are feeling better, but it is not a conventional treatment and I can't imagine there is any information (from trials) on what effect both of these together have (on balance between oestrogen and testosterone) and possible androgenic effects after several months (or years) of treatment.
I do hope you continue to feel better though :)
Hurdity x
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HI girls after 26 days of half a tablet no change at all rather worse with anxiety panic red alert mind. Hit rock bottom as I cannot sleep now even for last 3 days. What should I do girls? Stop tibilone and see doctor next week and change to something else. Sad tha it is not for me I think or is it that I home with holidays and this has added to the problem. some suggestions I feel i have hit rock bottom this week. What can I do to just have a breather from this 24 hour anxiety as I think I am losing the battle. Sorry once again.
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Hi Pam
It does sound like Tibilone is not suiting you. Normally they do say stick with any new regime
for at least 3 months (cant remember how long you've been on it) but if if you're anxiety is that bad I would ditch the tibilone and see the doctor next week. Good luck and hope you're feeling better soon x
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Hi Pam, I have just seen your questions asking if I am peri or post. To be honest I am not exactly sure! I started on HRT 2 1/2 years ago when I was peri and consequently don't know where I am in the process (age 55 1/2). When I switched to Tibolone 5 months ago, I was told you could have it post meno or after age 54. However, I did have a period in november and again now, so I don't know if this is due to incorrect balance or my own period breaking through? I will be asking the consultant at an appointment later this month. How are you getting on, have you made any decisions whether to continue?
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Hi ladies,
A quick question - As I am in the first month of changing from 3 pumps of Oestrogel to Tibolone, I am finding dizziness and morning anxiety to be worse for me. Previously when I have tried reducing oestrogel I have suffered dizziness too.
Do you think it needs more time to adjust.
Wxx
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Hi, Warwick!
I'm just about to join you on Tibolone - my consultant changed me to this yesterday but I've yet to start it. I'm worried about coming off my 2 pumps of estrogel onto this. Do you think Tibolone is much weaker? I'm worried about having one of my catastrophic 'hormone crashes' again. xxx
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Hi Tempest
Tibolone sounds like the perfect HRT for post meno ladies, so join me and give it a go ;)
However, I would suggest you introduce Tibolone by taking half tablet along with one pump of gel the first week (my consultant recommended this) then increase accordingly. I have now completely stopped the gel (was on 3 pumps) and now taking a full tablet at 10.00am.
Yes had headache, joint pain the first 2 weeks but all gone now. Head not as fuzzy as when I was on the gel. I am determined to give it at lease 2 month and review then. The main issue I have is the dizziness and I think its due to coming off the gel, as previously when trying to reduce the gel...
always got dizzy.
Good luck and keep us updated ;) Wxx
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I'm so encouraged that things be are settling well for you, Warwick! That's great. :)
My consultant advised a straight switch - so I hope this is going to be OK! :o
My GP said today that he's noticing a renewed interest in Tibolone just lately. He has a few older ladies who are still doing well on it after many years and he's happy for them to do so, that that's very encouraging!
Do keep us posted how you're getting along, Warwick - there are a growing number of the 'Tibolone Tribe' now, aren't there? I do pray that all the lovely ladies who are trying this manage to have great success with it! :) xxx
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I was told I can't have it!
because of hair loss
but I think I'm going to go to doc's and ask as I can't take anymore oestrogen only and am still in same boat as I was over 7 months ago, hair loss, weight gain low mood
I'll see doc's on the 20th and demand
Abby
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Hi Abby
Keep us updated on how you get on with GP.
I have existed for several years, now I want my life back so trialling Tibolone (nothing to lose)
Watch this space ;)
Wx
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Thanks Warwick.. that's good - no point in just 'existing'
keep me posted
Abby
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Oh, dear Abby! Hi!!!
I've been catching up on your posts, and I have PLENTY to answer on your thread but just for now can I say that I really think, like me, you have NOTHING to lose by asking to try Tibolone and possibly everything to gain! And.....provided you are well (and I know you are a very fit lady), you can stay on it long term! My GP has ladies in their 80's who still use it by choice after having total hysterectomies including ovaries and they continue to do well on it. :)
By the way, your diet is EXCELLENT and there is NOTHING that needs changing - I'll answer more on your thread but surgical menopause is different in that we go through things so suddenly that the body is in shock (and mind too, might I add) and the 'normal rules' don't apply to us. I also have good news for the long term which I received from my Consultant regarding us surgical ladies, but I'll tell you more later.
I am a trifle perturbed by folk telling us that we should be 'happy' to be able to take estogen only, because this in reality is NOT a piece of cake! Progesterone acts as a diuretic, and as we don't get prescribed it, the bloat and water retention for us can be worse, at least initially! I feel your pain, I really do and the Tibolone may very well give you better 'balance'. I for one HATE feeling like a custard filled balloon and like you, I REALLY watch my diet. And curiously - I've gained 10lbs since my surgery too. So I'm beginning to wonder.....
I'm rooting for you Abby - go and ask! And also if the GP hits you with hair loss, tell them you feel it's likely thyroid related and you need to see an endocrinologist as you're self managing at the moment. It's really not fair on you!!
Sending you biggest hugs!! xxxx
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Oh thank you Marie!!
I've got an appointment next week - I think all you say is correct and that the ongoing hair thinning/loss and inability to lose weight is really nothing to do with diet/exercise carb balance (although I must saying doing the Veganuary thing has tipped carbs over normal, but only things like brown rice etc, not cakes biscuits white carbs)
I will see if I can try tibolone - as you say, nothing to lose and I am missing something clearly.. hope you get on with it too please let me know!
Abby xxx
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http://press.endocrine.org/doi/full/10.1210/endo.142.11.8497
Interesting study on the increase of FFM (lean body mass!) after taking Tibolone!
Abby
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Wow!! Given your work out regimes Abby, this sounds ideal for you! Did you also notice the compliance statistics? They were very high - only 5 women out of 98 enrolled dropped out of treatment! And the reasons were very benign.
Can I just also say that you'd find a good friend in Menomale who has just rejoined us here as she is a committed vegan too! You two should definitely hook up. :)
I must admit I'm 'bricking it' about starting the Tibolone tomorrow but that's only because I've had such a wretched time with ERT so far, as I know you have! A lot of your experiences have been so very similar to mine that I KNOW us surgical ladies are different!
Sending you hugs, as always! xxxxx
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Hi Tempest,
A wise women once told me 'risk nothing - gain nothing' I hate any sort of medication as I always have problems antibiotics etc. My husband always says I must be in pain if I take paracetamol.
Yesterday I read on this site a pt of Prof Stud was advised by him to reduce the gel to one pump and add half tibolone for one week (just to let you know)
My advice..... make no plans for a couple of weeks and expect some form of side effects for the first few weeks. The first 2 were the worst for me. Not out of the woods yet but planning something nice for hubby tonight........ if you know what I mean ;D defo the libido is returning ;D
Procecco in the cooler although like other have said white wine makes me feel a bit odd (that was the first week)
Wxx
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WARWICK!!! You temptress.....! :veil:
That is absolute music to my ears, my dear!!! Thank you so much for your encouragement. :) :)
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Warwick excellent words of encouragement
Enjoy your night nudge nudge wink wink xxxx
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Warwick, Marie (Tempest) Good luck to both of you and let us know how you get on.. either here on in PM
I will be asking for it next week - my hairloss has definitely got worse since the op - which makes me think is a hormone prob not so much thyroid, the quality of my hair has declined, as in as got a lot thinner and finer and fly away and has receeded around the hairline, very classic androgenic symptoms but caused I suspect by inbalance in the two (three!) hormones
I will beg for a trial of T and see if I can join you in the Tibolone Tribe!!
Axx
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Awww, bless you and thank you Abby!!! :)
Yes, I think it would very much be worth a go for you! Especially as you saw some improvement in your hair when you tried estrogen only (even though the other effects were horrid - I know only too well myself)! I think it's balance that we need.....I hope I have good things to report to you although I'm expecting a bumpy ride at first. Warwick has given us very encouraging news today - which is probably why she's quiet on here just now.....Ahem!!! Go, Warwick!!! ;) ;D xxxx
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Hi
Update from me
Well I had a fantastic evening, for the first time in years I felt like the old me ;)even my hubby commented on how I looked so well. No symptoms........just a glimmer of the old me.
Unfortunatly woke this morning with banging head (3 glasses of prosecco) nausea, flushed and feel really off jelly legs too. But I do find mornings are the worse for me as I feel the Tibolone effect as wore off.
Will keep you updated Wxx
It's still only my third week
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When do you take yours Warwick ? Have you experimented on timings ?
I'm getting sooo confused on who is doing what and when lol
X
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That's brilliant, Warwick!!! :) :) :)
I've joined you all today and taken my first tablet at 9.30 am. I reduced to 1 pump of gel last night and even felt better after doing that but a 'hormone crash' is always a big worry for me so I didn't sleep very well last night. :o
I'm sure today is going to be very up and down as the gel leaves my system, so we'll see! xxxxx
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Good luck honey!
We're here for you holding your hand 😘 Xx
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Thank you so very much, Annie! That really does mean a lot. Hubby is working the weekend and not off until Tuesday so it's wonderful knowing you're all here! :) :)xxxx
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Seriously, I'm not going anywhere this weekend so I'm here for you xxxx
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:thankyou: :thankyou: :thankyou:
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Me too Tempest
Your not alone ;)
Not a good for me today but onwards and upwards
Wxx
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Well I've only good things things to say about Tibolone and I've noticed that my hair is growing thicker and faster too. But yes it is about balance and whereas my mood, temperament and general sense of well being is good, I need testosterone for my libido and have had to source and buy it myself.
So I hope it works for those of you who are starting out, hopefully you should see an improvement in a couple of weeks.
The only downside to Tib is that is lowers your ability to handle your vino. I've got bottles of, Asti, Prosecco and other wines untouched, that would have been finished weeks ago normally.
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Good on you BG
I wonder what Bacardi or Baileys will do to me ? I'll let you all know when I next try it
X
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Thanks so much, Warwick!
Blakeygrey, I'd just be happy if it WORKS and I don't go bonkers on it! I haven't drunk in oooh.......how long! So it's not an issue for me! ;)
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Well I had a fantastic evening, for the first time in years I felt like the old me ;)even my hubby commented on how I looked so well. No symptoms........just a glimmer of the old me.
Unfortunatly woke this morning with banging head (3 glasses of prosecco) nausea, flushed and feel really off jelly legs too. But I do find mornings are the worse for me as I feel the Tibolone effect as wore off.
warwick! 3 glasses of proesecco :o. No wonder you had a hangover!!! Many of us experienced decreased tolerance of alcohol as we became peri-menopausal and especially if taking HRT. I noticed this and later it was worse on the progestogen part of HRT. I would manage alcohol consumption very carefully!
For the record - and I've posted about this before, if I am drinking wine or prosecco I only drink it early in the evening and with food. If I go out for a meal that's fine too. However I always drink at least twice as much water as wine and all the time I am drinking the wine I am drinking water. I stop drinking wine etc approx by 9 as if the effects of alcohol have not worn off by the time I go to bed then I could wake with a migraine which then lasts for 3 days! If I'm out for a meal I find finishing the meal with an espresso also helps (prevent the migraine), and then going to bed with a paracetamol if I think I've had slightly more or slightly later than I usually do. So far this has worked and haven't had an alcohol induced migraine for ages! Bit off topic but you mentioned it warwick and as I enjoy a drink or two (dry January excepted) thought this might be helpful - to you or anyone else :).
Glad you are feeling better generally though ::)
Hurdity x
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Funnily enough, I was never able to tolerate alcohol at all after my hysterectomy aged 36! It's definitely 'dry county' around these parts...... :o
I'm thinking I've been hormone deficient pretty much since then, but unbelievably I didn't notice! The reason being is because I also at the time had a very complex situation going on with my spine and was heavily medicated with morphine and fentanyl for a good few years - I was told that the night sweats, flushes and dizziness I had were due to the drugs! After I ceased them following anaphylaxis, I 'magicaly' appeared to have entered peri menopause as these symptoms remained......Hmmmmm...!!!!
I chatted with Professor Lumsden's team about this, and they have now referred me for a DEXA scan. I'm really rather scared to see what the findings will be....!! :o
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What is a DEXA scan Tempest?
You probably were hormone deficient after your hysterectomy - I noticed symptoms after about 6 months I think x
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It's bone density, Annie!
I'm thinking so...........It's scary isn't it? You know what it's like - you get fobbed off and told not to darken their door again unless something SERIOUS crops up so you're none the wiser! I always got fobbed off by (my then) GP too that there was DEFINITELY nothing hormonal going on. Wasn't offered tests or anything! If I wasn't so befuddled at the time on all the morphine etc I would have wised up sooner, I can tell you! :o
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It's bone density, Annie!
I'm thinking so...........It's scary isn't it? You know what it's like - you get fobbed off and told not to darken their door again unless something SERIOUS crops up so you're none the wiser! I always got fobbed off by (my then) GP too that there was DEFINITELY nothing hormonal going on. Wasn't offered tests or anything! If I wasn't so befuddled at the time on all the morphine etc I would have wised up sooner, I can tell you! :o
Aw I hope the results will be good
I had a wise gp back then who specialised in women's health, she was a godsend during my pregnancies and losses
My daughter is at that surgery now and she mentioned me to the gp and she remembered me! X
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It's bone density, Annie!
I'm thinking so...........It's scary isn't it? You know what it's like - you get fobbed off and told not to darken their door again unless something SERIOUS crops up so you're none the wiser! I always got fobbed off by (my then) GP too that there was DEFINITELY nothing hormonal going on. Wasn't offered tests or anything! If I wasn't so befuddled at the time on all the morphine etc I would have wised up sooner, I can tell you! :o
It's a shame to admit but it's a lottery advice wise. I had a hysterectomy and was waved off with not even a leaflet never mind conversation about the Menopause, my hormones or HRT. Thank the Lord for this forum and all you lovely ladies.
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Amen, Blakeygrey! Did you keep your ovaries by the way? xxxx
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Morning All
Update from me!
Well spent all day in bed yesterday with sickly migraine.
Up all night with these what I call surges. They feel like a strange tingling coming up from my legs into the pit of my stomach along with feeling faint. I had one after another last night (they really scare me) I can't believe how well I felt Friday :( I finish my first pack (28 days) Thursday, please tell me I should carry on??? Today the headache has gone, joint pain better, but feeling like jelly all through my body...... A couple of palpitations today for the first time.
Tempest - hope your feeling ok ?
Wxx
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Hi Warwick I just commented on your other thread. Are you sure it's not the alcohol ?
I get terrible palpitations day after I've been drinking and can't really plan anything . This just might be day 2 of your hangover x
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Warwick - I also commented on your other thread. Do continue with the tibolone - give things time. DG x
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Annie/Dancingirl
Thank you so much for being there with the support.
Yes things are better today. I really want Tib to work as I never felt right on other HRT.
I panic with every little niggle..... think I'm going to collapse and dye (very irrational) always had a fear of medication.
I really appreciate your support as only my husband know about my HRT journey.
Wxx
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Warwick I'm seeing taking Tibolone as taking the contraceptive pill so that I'm not worrying about every little thing, last night I was stuck in a position because my shih-tzu was asleep on my legs, I thought oh could be Tib but then I thought I've aches and pains since meno started and once he gets off I'll have a walk about. I'm getting headaches (actually this is first morning so far without one) but I'm s headachy person anyway.
I can get terrible hangovers since meno, it's all hit and miss
Carry on Warwick, you're doing great apart from this little blip x
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I agree about the alcohol as I mentioned ealrier in the thread - my alcohol induced migraines (not a hangover because I don't drink enough for that!) would last for 3 days, so with the Tibolone as well maybe taking a while to recover? Also there may well be blips in how you feel due to variability in absorption/digestion of the tablets perhaps? Yes I would carry on if you can just because any HRT should really be tried for 3 months to fully adjust - and if you are changing from the gels - some of what you are feeling may still be down to that. Try not to analyse every niggle or pain and attributing these to the Tibolone - try to be as positive as you can - this is going to work for you - and stay away from the alcohol until you've settled into the Tibolone!! :)
Hurdity x
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Annie/Hurdity
Thank you sooooo much for the pep talk, it really helps.
I will take your advice and carry on. If not with Tib I was ready to try something else to get my life back.
Annie - I know what you mean about every niggle >:( I was on the pill for 8 years with no problem so like you will imagine this is the pill.
I do think changing from gel will have some sort of impact.
Wxx
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It will do! I'm changing from Estrogel too Warwick, so we can hold each other's hands to get through this! Remember the other day when you said it was the best you'd felt in a long time? Well, you can and WILL have more days like that! The blips will get less and you'll see more better times, you'll see! And remember - there were MORE hormones in the pill than you're taking via HRT and you're just adding back, not dumping more hormones on top of what you already have so this is BETTER! :)
Sending you biggest hugs!!! xxxxx
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Aww Thank you Tempest.
When I was in my 20s/30s just took my pill (although took a while to find one that suited me) without a thought. Now worry about every little feeling. Today I imagine a stroke, how irrational I have become.
Keep updating...... xx
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I was in ovran 30 I think it was called. It was WAY too strong for me, sent me loopy so they put me on trinordial and I was fine x
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Annie
First one was Eugynon
Second was Microgynon, both made me loopy
Then went on Logynon and was great for 8 years. When I stopped taking it suffered my first hormone crash GP said it was a nervous breakdown and put me on AD. I wasn't that informed in those days (deep down new it wasn't a mental breakdown)
Wxx
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Wow Warwick I count myself lucky. I don't recall anything happening each time I came off to conceive.
An interesting thing...... I had lost babies and on my 4th pregnancy my dr said I was bigger than my dates so sent me for a scan. The sonographer said it was a failed twin pregnancy (one bean had a beating heart but the other sac was empty) but they noticed my uterus was upside down and had a divide down the middle, they recorded their findings as 'failed twin pregnancy and bicornuate uterus'. I later asked my GP (who was so involved with gynae matters) and she said it's highly likely I ovulate from both ovaries each month as if there's 2 uterus (only one but with this divide) On my 5th pregnancy at 5 weeks I started bleeding, dr came out and said cervix has closed. So I had to go for scan, once again there was the remnants of an empty 2nd sac. So to my knowledge that was 2 twin pregnancies in 5 . Also my maternal great grandmother had about 4 sets of fraternal twins, so I wonder whether she had this type of uterus
Useless info really but would my hormones have been higher because I ovulated from both ovaries ? I never had pmt or anything each month x
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Gosh Annie,
Really interesting post - never heard of that before.
Wxx
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I think the alcohol effects being worse with HRT are because the HRT is held in the liver, so adding more burden to it makes it throw the hormones into the bloodstream more quickly.
I was much worse with my high oestrogen pill Brevinor with nausea and migraine after drinking but the lower one (Loestrin) made me much more tolerant of alcohol. Good now with progesterone and find red wine affects me better than white and cocktails (like side cars and mojitos) even better even though I'd assume cognac to have more congeners.
The Tibolone sounds good and something I'd consider post meno if needed.
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Oh wow, Annie! You've had such sadness! You're truly a wee soul!! :'( :'( :'( Gynaecology is so complex - I really think the 'experts' are only skimming the surface a lot of the time! Much more research needs to be done into Obstetrics and reproductive health in general (but as it's not a 'male' area of medicine, I am sensing a bias. Hmmmmm)!!! >:( Twins also run in my family - my Mum was a twin (are you sure we're not....?? Yeah, I know I've been there before. Ha ha)!! ;)
Hi, Dangermouse! That makes perfect sense about the liver/HRT/alcohol! Good thing I'm a lightweight and don't drink. ;)
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I've had some problems yes Tempest, but I am lucky too, against the odds I have 3 children and 3 grandchildren :-) x
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That's truly wonderful! :) :)
I'm very blessed to have my one son too. I had an ectopic pregnancy before him, and was told it was unlikely I would conceive (my other fallopian tube was damaged too due to prior surgery).
Were very blessed Mums, Annie (I'm not a Grandmama yet)! ;)
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Aw absolutely - you'll make a lovely GLAM-MA xx
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Bless you heart!! I don't mind being a wee plump bottomed Nana with my tin of home baking to be honest, as long as everyone is healthy and happy.....It'll all be about the little ones then. :) :)