Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: Sooze on October 30, 2016, 08:14:42 PM
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Hi,
I've already posted in the 'New' section and, if it might be useful will try and regularly update this thread outlining my experience on Tibolone.
So far I'm almost 7 weeks in and have found the following:
Taking before bedtime doesn't suit me. I seem to get an energy surge in the first 4-6hrs, which isn't good before bed/at night. I'm working on changing the time I take it - I've taken it at 2pm the past week and it seems much better.
Having an espresso in the morning is fine, in the evening makes me anxious and on edge at bedtime. This is really strange as previously I could have a coffee before bed and have no problems whatever.
Alcohol. I'm not a big drinker, but had half a bottle of wine (only 11%) last Saturday at a party, woke at 3am with what seemed like a hangover, and felt quite delicate in the morning. This is not an issue as I'd rather drop the wine & keep the Tibolone ;)
Hair. I'm naturally fair with very fine hair and had noticed over the past year or 2, a reduction in body hair (I'd developed a pubic bald patch, rarely needed to shave my legs and armpits). I also can't remember when I needed to pluck my eyebrows. Well I have started to get a little bit of sprouting, still fine and fair.
Energy/ aches and pains. Took around 5-6 weeks before I saw an improvement. I still have days where I feel better than others, but it is improving.
A question:
I was told to continue with Vagifem and use Ovestin cream 1mg externally. I've stopped the Vagifem due to 'excessive moisture' ;D the Tibolone seems to be doing enough. I'm continuing with the Ovestin, but not sure if I'm using the correct amount. My gyanacologist said to use a 'blob' and rub it in externally. The tube is 15g and I've hardly used any from it. However, things are nice and comfortable down there, so I guess I can't be that far off the correct amount?
Hot flushes - maybe once a day, more likely when I get up but really minor compared to how it used to be.
Anxiety - I'm having the occasional anxious moment, usually when I'm trying to get to sleep and trying some relaxation exercises which are helping.
Well that's all for now, will update as time goes on.
Sooze
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That's really good to hear you're getting on well with it
Have you noticed any weight gain ? And is scalp hair ok ?
These were the 2 things that worried me about trying Tibolone , I have hair thinning already and was worried, but I'm trying Testosterone and although the amount of shedding seems to have decreased I am sure I've lost more hair which is really odd as when I run my fingers through my hair I'm getting much less quantity coming out
X
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Hi Sooze
I don't think I've done so already so :welcomemm: !
Thanks for the update re Tibolone and glad you are feeling better on it - if you keep the thread updated it will be really helpful to others contemplating this treatment - even if you don't always get a response :).
Re the Ovestin - blob sounds about right! Ovestin contains a higher concentration of estriol than the generic estriol cream so should be quite effective. You might find VA re-appears if you stop the internal use but if you start to get any signs then perhaps you would need to do a re-load and then maintain its use regularly?
Hurdity x
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Annie0710,
No weight gain I can attribute to Tibolone. I gained about ½ stone between May & July that I'm now going to make an effort to shift over the next 3 months, as I have more energy for exercise (and horizontal jogging ;) )
I've never had a hair loss issue, even post pregnancy, it just grew finer. I've not noticed any hair loss so far, and it's too early to judge if it's improving.
Hurdity,
Thanks for the welcome, and reassurance. I'm going to make sure I have a back up Vagifem supply, just in case, but the Tibilone made such a huge difference. Adding Vagifem to the new 'monsoon' conditions seemed a bit excessive, and 3 weeks on it's still OK.
Sooze
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Well, her I am almost at the end of week 8 and things aren't going too badly.
I've had the odd muscular twinge, a bit like when you get cramp, which resolves quickly if I massage the area. Otherwise my joints feel much improved, especially my left shoulder that I injured about 6yrs ago - it's more mobile than it has been for years.
I've had a glass of red wine with a meal and had no issues - so maybe I just need to avoid white wine or limit it to a glass?
I was a bit worried yesterday, as I had a headache from about 11am, and I rarely get headaches. Work was very stressful though. I didn't manage to take any painkillers until I got home and it did go by the time I went to bed, so I'll just keep a watch out in case I get more.
I did have 1 night last week where I had a touch of the anxiety symptoms, feeling unsettled, racing pulse etc and I think I may have done less than a blob of the Ovestin for a few nights, so I did a blob and a bit. I guess it's not excessive as I didn't use the Vagifem?
I did top up with a Vagifem last night instead of the Ovestin, but did notice I felt a bit bloated this morning - not really noticed that before so going to stick with the Ovestin only again.
The only other thing of note is that my eyelids have gone very dry & a bit sensitive - think this might be due to the weather getting colder, but anyone else had this happen?
oh, and the libido is still :bed:
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Hi. I'm following this with interest, just in case my gp suggests Tibolone instead of testosterone. So thank you for the updates.
Blakeygray :)
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Update for this week., 10 weeks in.
White wine is a definite no no. Just half a glass made me feel awful.
Sticking to 1 espresso in the morning and no more nighttime anxiety.
Headaches. I'm not convinced that what I'm getting are actually headaches, but possibly sinus congestion. It's defiantly an 'ache', which comes and goes lasting a minute or 2 maybe 3 or 4 times a day. Annoying, as my specs feel too heavy when it happens, but no more than that. Perhaps Tibilone is effecting nasal mucous membranes?
My joints are feeling amazing, and mobility still good.
Skin still fine, eyelids improving no extra facial hair, slight eyebrow & lashes improvement. I don't think there's any change in my scalp hair density but I am getting more root lift, and when I get up my hair isn't as flat - this could be because I'm not getting any night sweats I guess.
No real weight loss, but no gain either. Not managed much exercise as I'm working more hours to cover maternity leave. That should change next month.
My cleavage does look fuller though, which is nice. And the cellulite on my thighs is defiantly less 'bumpy'. Be interesting how this changes when I get chance to exercise more.
Still sticking with Ovestin externally only and all down there very good, keeping an 'action' diary and averaging 3 times/week, so pleased!
Really hopes this all continues and so glad I tried it.
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Sooze
Thanks for all this info I'll be watching your posts with interest
I'm hoping to feel a bit better tomorrow day 3 as have had an awful day today
Felt so nauseous
Wobbly & nervy
Feel very unsure of myself
But sure it's just the hormones infact I know it is
But I'm so hopeful
My hubby being so supportive 🙂 As had lenghty chats about how I've been struggling past few years and he's been great I suppose I'd just not told him and expected him to understand 😁
Explained to him
My brain is like fog
I can't seem to think straight
My mood is like a raving lunatic
I've a mobile phone going off intermittently just behind my c section scar
One min ok ....
next angry
tearful
feel sick
hot palpitations
Claustrophobic
Anxious
and I can't control it 😰
I'd joined a menapause forum thing and I didn't realise how many women are the same but that doesn't help it just reassurance I'm not losing my mind ! As I've gone from a woman whom was
Driven
Motivated
Multi tasked
Enthusiastic
Happy
Loving
Mad
Caring
Sense of humour
To fog brain
Motivated as a cabbage
Can't even remember what I bloody went in the fridge for
No enthusiasm
Sad lonely
Some days it even scares me to go out but that's something I'm not letting happen
ZERO Libido
Tearful
Feel worthless
So I suppose I'm trying to say talking helps as he really is being fantastic X
I m not Me anymore I don't know who I am it's so bloody hard im like 😉🙋😰💋😋😁🤔🙄😖😱😕🙂😝😡😏😃😂😁😬😁🤔😎🙄😏🤑😰😩😫😖😱😳😰😤😤😩😫😈🙅😂😂😂😂😂😂
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Same here Sooze. Exactly the same!!! Except I'm not on Tibolone - I've been taken off HRT altogether!! :bounce:
And I don't know who I am anymore either. Please let this pass soon - surely we won't feel like this forever??
:bighug:
At least your OH is understanding. Mine tries to be and asks me how I'm feeling but if I tell him the truth he accuses me of talking about the meno too much :beat:
So I try to stick to subjects which are all about him. Or politics. Or the fecking weather...it's exhausting. I avoid conversation as much as possible now...
Hang in there - women say it gets better...
Jx
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So a bit of an update, managed to do 'double exercise' at the gym today (80 mins). 50mins cardio split into 35mins and 15mins with light weights in between and I'm not wrecked this evening ;D I can't remember when I last managed this, maybe 10yrs+
Going to tackle the ironing (lucky me). So a definite energy surge.
Despite a crap day at work yesterday I actually felt happy and upbeat at the end of the day ( possibly because it's 2 weeks until I go part time).
I can't remember when I last felt so positive about the future, my future.
I think I may be getting borderline evangelical about Tibilone - I really hope this continues.
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That's fantastic!
I'm seriously considering putting up with the headaches and going back on Tibolone as I had so much energy on it compared to Oestrogel and Testogel.
Glad you're doing well on it :-)
X
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Sooze this makes for brilliant reading, well done you!
I'm less than a week into taking Tibolone and can't wait until it starts to kick in.
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Ooh Sooze you make me want to try it after years of being on the same HRT. ;D Probably a bit late for me to swap to tablet (sort of) HRT in my 60's though!
Hurdity x
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Here you go, another update.....
So don't be tempted to go full out on the exercise. Boy have I suffered :-\
My poor hips, knees and ankles have really been stiff for 4 days this week :'(
No so bad that I've resorted to pain relief though, just slowed me down.
But the good new is that headaches/ sinus pain has completely gone.
My scalp hair is defiantly growing quicker, but not thicker unfortunately.
Body hair more like it was 5-20yrs ago, no facial hair increase besides maybe 1 or 2 eyebrow hairs.
Skin fine, no breakouts
Still got quite good energy levels-I'm not collapsing on the sofa after tea still.
Hubby went away last weekend (family thing), and I think he's suffering from the "Manopause' or possible 'hormone envy' with my mood lifting. I've not been prescrIbed Testesterone gel but anyone tempted to 'secretly share'. Or how do you think could I broach the subject with 'him indoors' that he could do with a boost :D
Suggestions welcome!
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I'd visit a manopause website and leave the page open on the laptop/tablet. Or any Internet page about the benefits of testosterone in older age ;D
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Another update, almost 12 weeks since starting and I'm a little disappointed.
So lets start with the good...........Mood good, mentally feel quite well balanced.
No increase in 'hair in unwanted places'.
Personal moisture levels, excellent.
Hot flushes - very almost zero.
Energy levels good and sleeping well.
I guess I feel 'normal' - or my 'normal'.
Disappointment..............I don't think the aching joints were down to the exercise, they have persisted. mainly hips, lower back and knees.
Libido has dropped off somewhat, and would say a bit below what my pre meno level was. Now don't get me wrong, this is still better than what it was, but having had experience of being a 'randy old sod' I'd quite like some more of that ;D
So the question is how does my body know what proportions to convert the Tibolone to?
Could it be that it started with a bit too much Testosterone & now the Oestrogen & Progesterone have kicked in it's dulling the Testosterone effect?
I'm seeing my gynaecologist at the end of Dec, and wondering if I could have Testosterone gel - just to top things up a bit? Is anyone taking Tibolone & using Testosterone gel?
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Good question Sooze and one I'm interested to know the answer to as well.
Is anyone taking T and Tibolone?
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Hi sooze
I am doing the reverse, my specialist prescribed Teso gel using pea size blob twice a week, after no weeks there was no change so have increased to four times a week and wow liabdo has finally come back after years it seems but no other changes, I am due to see my gp on the 11 to discuss adding tribone and then I Amy back to specialist in January after the doc re does my testrostone levels. It started at 0.1, so will be interesting to see what it goes up to after two months.
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Thanks mojo, please keep us updated :)
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Have a look at this, it seems there's a 5mg dose available if your dose isn't working as well
http://patient.info/forums/discuss/tibolone-extra-dose-548649
X
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This is so helpful Annie, thank you :)
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Women are splitting doses and tablets too, gives more control than we thought x
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Hello Ladies.
I've just posted on another thread that I am interested in Tibolone so these comments are very helpful. I am post menopause so I would be a candidate and may mention it to my GP when I see him in the New Year.
Many thanks to all the ladies who so helpfully share their knowledge and experience.
Take care all.
K.
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Hello ladies,
Just quick update, the specialist wrote to my doctor to suggest along with my testosterone gel, I can now include 2.5 tibilone so started last Saturday, this has replaced the cerelle mini pill I was taking to stop the ovulation point half way through the month when my body went into overdrive with the progesterone.
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Well here's another update almost 13 weeks since I started.
So the aching joints have subsided again and the libido increased :party:.
The headache/sinus ache has come back though. Not enough to need painkillers, more of an annoyance, slight tension headache, very intermittent.
Yesterday it was nagging on and off through the day, but I did have a stressful day at work. Then I had a flash of inspiration last night and although not needing a Vagifem, I wondered if it would help/effect the headache. Well, it may be a coincidence but I defiantly feel better today - maybe I need a bit of extra Oestrogen?
Now working part time & increasing the exercise so hoping to shift a couple of pounds. Energy levels still very good, and mentally very balanced.
Skin all OK and no excessive hair in unwanted places. Scalp hair growing a bit faster, but no thicker :( Well, you can't have everything sometimes!
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good to hear that tibolone is working for you with 13 weeks of taking it. Did it help wiht emotional being in terms of low mood and anxiety itself.
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Pam Madra,
For me absolutely. When I was peri, about 5 or so years ago I had the full blown panic attacks, and with hindsight I was probably a good candidate fo AD's but my GP put me on Femoson. This got me over the main crisis but 18m later and I was getting similar undesirable side effects to when I was on the combined pill -emotionally flat and zero libido. I did a gradual stopping over 2months and never got another period.
I did get bad VA after that so my GP gave me Vagifem which I plodded on for around 2yrs, my 'feeling like me' returned but not libido and VA not treated by Vagifem alone hence eventual referral to gynaecologist last August. This was all prompted by me reading an article in the Times about testosterone - I identified with so much in the article it was shocking.
For me Tibilone has reawakened my 'inner happiness' made me more motivated, more energy - that saying nothing in the change to my sex life :bed:
I'm sure it doesn't suit everyone but I'd say it's worth a try, as long as there's no contraindications to doing so.
HTH
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HI Sooze
Thanks for sharing all this information. I am just concerned that everyone says that tibilone is used for post not peri menopausal women. so I guess you used Femoston first then and then vagifam. Did these help in any form? I currently experience no inner happiness and completely flat emotionally. Did you have normal menopause and how long did peri last with you? Sorry for asking so many questions. thanks
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Pam Madra,
I think 'I started getting symptoms end of 2007, but my periods were never irregular or heavy- just had occasional hot flushes.
Femoston sorted the flushes, sleeplessness and panic attacks but not the aches and pains or low libido that has come on over the pervious year, but I can't say I felt happy/emotionally upbeat, and libido was pants so March 2012 I weaned myself off. I was also concerned that I was starting to feel depressed, in the same way as I did on the combined pill - I only managed to take that for 2-3yrs in my twenties before I started to get suicidal tendencies.
I never had any bleeding after I stopped Femoston. The GP prescribed Vagifem in July 2012 and I'd been 'managing' with just that up to September this year, which I now realise was stupid, I really should have gone for help sooner..
So to answer your questions my peri probably started late 2007 and officiall ended March 2012, as I had no bleeding after stopping Femoston, so post would have been March 2013.
HTH
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thanks Snooze for the information. I think some of us are new to tibilone in this forum and really interested in knowing if it gives some hope to all of us. I think by following each other we can share few things and find some answers and accept few things.
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I loved Tibilone and only ceased it due to a significant increase in (already existing) facial hair. It literally stopped my flashes from 1-2 in an hour to nothing within 3 days. So easy, just one tablet at night and my life was back. ;)
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thanks matildamouse. did you have any issues with anxiety or low mood lack of zest for life. I also have nausea which does not help and very impressed how quickly it worked. i have had it for only 5 day and half a tablet only. please share
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Reading these posts.......sounds like the magic pill we are all looking for.
Off to GP to suggest another try. Was on it 25 days last year but stopped due to unbarable VA incontinence, cystitis. Told GP but she never suggested anything for the VA.
Thank goodness for you ladies
Wx
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I hope it works magic for you warwick. Do keep us posted how it progress. I am peri menopause and taking half a tablet only yet at night time so would be really interested how it goes with all of us who have similar issues but may be at different stages of life or path medically. thanks
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thanks matildamouse. did you have any issues with anxiety or low mood lack of zest for life. I also have nausea which does not help and very impressed how quickly it worked. i have had it for only 5 day and half a tablet only. please share
As I had no quality of life prior to the Tibolone (1-2 hours sleep per night constantly for 2 weeks while rolling around in sweat), to me it was such a relief to be able to SLEEP and not have the constant hot flushes day and night, so it improved my mood dramatically. BUt women do differ in their responses. I tend to believe that I might never be my old self since the menopause business started and as long as my most bothersome symptoms (to me the lack of sleep and flushes) were under control, I am happy. I can rather cope with a low mood than constant insomnia and hot flushes as I live in a hot part of Australia!
All the best, I really hope you find what works for you. IT is not an easy road...
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yes our Australia weather can be testing. Thanks for your kind words. It is early for me to say anything. will keep you posted
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Update - almost at the end of week 15 and had a review with my gynaecologist.
She's very happy with the improvement in the VA, and a uterine scan shows no thickening. No real answer for the headaches/sinus discomfort, but as it's a minor side effect I'm happy to live with it and there have been less the past 2 weeks. As I've restarted the Vagifem it could be the extra Oestrogen keeping them in check.
Libido is still very good compared to pre Tibolone, but does have peaks on and off, and hasn't gone off the scale again as it did in the first month. On refection it's probably safer if that doesn't happen again.
As I've had no increase in facial hair, and overall my reaction has been very good, she thinks it's a bad idea to add in Testosterone gel - in case it knock everything off balance, and putting my sensible head on I have to agree.
Energy levels still good, absolutely no hot flushes, joints are better but I have an odd day where they ache a bit, but not as bad as previously.
Mood very good and positive.
Weight - no increase, actually 4lbs down before Xmas - probably go back on though as full of a cold and not exercising ATM.
So, just going to continue under care of my GP, unless I have any issues. I did ask her how long I could continue on this regime and basically it's up to me, as long as I keep healthy. She actually has one lady in her 80's who refuses to stop HRT, and as there are no contraindications to her continuing she's not arguing with her!
I won't update further unless anything changes, as it's all pretty stable for me now.
Good luck to everyone else trying Tibolone.
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Lovely update Sooze, thankyou
so glad you're still doing well x
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Hello Sooze.
Thank you for the update. I would give my eye teeth for my mood to be good and to feel positive.
I am using a Conti patch and worry that the oestrogen isn't enough and the progesterone is ruining the effect anyway. I have a GPs appointment in January so I may ask to try Tibolone. Something's gotta give.
Best wishes all.
K.
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kathleen do update your situation with tibolone. Are you menopausal though I am peri and not really much yet for me as only 2 weeks half a tablet.
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Pam have you been told why it's not normally given in peri ? I am wondering (can't remember if I've posted this before) whether it's purely down to the fact pregnancy is a possibility in peri and the conversion to testosterone would be a problem with the fetus or whether there is another reason ?
If it is what I'm thinking, and you ensure you're protected , couldn't you take the whole tablet ?
Just a thought x
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thanks Annie. I will be checking with another gynae specialist in Jan to check about tibilone in peri stage. Yes pregnancy is an issue but taking protection though my libido is rock bottom. I wanted to check if I can take whole tablet as well. I just find that anxiety, foggy mind and nausea are my main issues. hope to find some answers.
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Half a tablet doesn't seem much when you consider there's a 5mg tablet available. Have a google. It's got to be your say as well as theirs surely when you're suffering xx
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http://www.med.monash.edu.au/cecs/documents/20120209-maprc-tibolone-study.pdf
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Wow! Thanks for the update, Sooze! Sounds like you're doing great. ;) :)
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thanks Annie. I have been in touch with these researchers from Monash and asked them about it as well. They said to me I can be part of the trial but needed to get some tests done and so forth. So I decided to go ahead but stay in touch with them. I agree with you that half a tablet of 2.5 mg is just too little for much effect. I will be getting touch with another gynae in Jan to review my whole situation. I am really impressed with Sooze progress. Also can you help me out with gall bladder stones issues as my ultrasound has revealed that I have lot of stones in gall bladder including big size one. I don't know if this contributes to nausea and anxiety as I really do not have much pain at all. I have lost appetite and there are days when I cannot eat much and lost weight also. So trying to figure out what is wrong. I think I want to up my dose and see but maybe just wait for opinion. But suffering is really bad with low mood, anxiety, nausea, sometimes wanting to vomit and periods a bit irregular. Thanks for this great forum and especially some of you who have always responded when ever in Australia I have asked for help. I am blessed to have all in my lives at this stage of my life.
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HI Sooze could you please update maybe once a month to share how you have been as I have been following you regularly since I started the journey of tibolone in perimenopause . thanks
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Hello again ladies.
I have yet to get my mits on Tibolone but I will be asking to try it in January and I will certainly update the forum.
Pam Madra - I am post meno so I'm in the right category for the drug but I hope it helps you too. The fact that women from all parts of the world can help and support each other via this forum is fantastic. Where would we be without each other?
Wishing you well ladies.
K.
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The more I think about Tibolone and peri I am sure it's to do with a potential pregnancy
Because if you shut down your own cycle with drugs Tibolone is prescribed. Are you sterilised Pam ?
Also Pam I have no experience of gall bladder issues, I would imagine nausea is a symptom but nausea and anxiety are classic meno symptoms x
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Hi Annie no I am irregular as far as my periods go so I assume I am perimenopause. I am not sterllised. Dr Baber gynae specialist in Sydney has recommended this but I am also visiting prof. John Eden in Jan to have another opinion about hrt. I have only taken two types of antidepressants and both were of no help to me. Tibolone is first form of hrt i have taken. I was on yasmin for long period of time and my gp was not keen on pills as yasmin did not help with hormone situation this year. Another gp had prescribed zoely but I did not take it. In meantime I have also approached Monash Uni who have trialled tibolone with peri situation. But I also think half a tablet is less dose to have any results quick enough. I am really trialling out tibilone and will have to get my gall bladder removed as well according to my doc. I will be visiting a specialist for it as well. Thanks once again for everything and thanks for advice
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Aw bless you Pam, hope you get sorted xxx
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Week 17+
Since my last update I've had a fair bit or sinus pain & headaches thanks to an absolutely stinking cold. However in an attempt to up my fruit intake I've made a conscious effort to have more bananas - smoothies, or in my favourite toasted sandwich with a small amount of peanut butter, and the last 4 days no headaches.
Now it could be a coincidence, or just the reduction in the amount of snot my nose has been producing (sorry gross I know), or something else but I thought I'd share just in case.
For those of you starting on Tibolone, be patient. The first month was very odd for me and I did have episodes of nausea (mixed with off the scale libido). The time of day I took it made a difference - before bed was the worst, morning OK but a bit variable time wise if I got up late, so now I take it around mid day and this suits me the best, so do play around with the time you take it.
HTH
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HI Sooze thanks for your kind words. It has been odd one this month with nausea always been a problem for me and really feel like it just there. Also anxiety not settling in much with half a tablet in 23 days thinking of increasing dose but worried about nausea. Also take it at night time maybe will discuss with doctor regarding taking time as well.
thanks once again
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Hi Snooze,
Hope your feeling better soon.
Thank you for the reassuring comments ;)
Day 8 11.00am not as shaky and nauseas as yesterday, still spacey head >:(
Please keel posting with updates as it helps us TT newbies
Wx
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just checking warwick are you taking in morning the full tablet?
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Hi Pam,
Yes took tablet at 10.00am today. Touch wood I feel better than yesterday, still fuzzy head, a little snappy, less nauseas ;)
Wxx
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Pam are you on anything to shut down your own hormones ? I was VERY nauseous during peri, if I had a womb I'd have sworn I was pregnant for 3 years
I still get nausea but very rarely x
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Hi. I have taken a full tablet yesterday last night. Following on I did not feel much for first two week on half a tablet but since my periods started very nausea ( though I have been having bad nausea already, gastro problems, leg cramps and still spotting. Chest tightness as well. I will try to change the time as I can sleep no more that 5 hours at night. I am not taking anything to shut down my own hormones. So I think I will take tibilone in morning/afternoon times and I think I will give it go till my visit next week to discuss with the gynaecologist. I am bit concerned that tibilone is giving side effects and I will have to give it. If anxiety does not get better then no use of taking it for me.
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I took mine in the morning and it took a few days for the sweats to stop and a couple of weeks for my mood to lift.
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Another quick update for you all - week 19+
Cold all gone and the headaches have not come back (yippee), which I think is also down to me doing a temporary increase in Vagifem (x3 per week for 2 weeks) and still doing the Ovestin externally nightly. I think I might be a bit over optimal though as my skin has gone a bit sensitive - dry eyelids and lower neck, which I last had when on Femoston, so I'm going to ease up a bit.
Libido good, not off the scale.
Aches minimal.
Sleeping well.
No adverse excess hair or hair loss.
Feeling quite normal, I would say - oh and no problems with Prosecco or......champagne any more! Would say my tolerance is back to normal and a couple of glasses doesn't make me feel awful.
I think for me there is a critical combination, and not sure if things would have settled on Tibolone alone, so I'll continue trying to 'fine tune' for the best balance for me.
I've been catching up with everyone else's experiences and impressed by all the support here - as they say, Rome wasn't built in a day and much as we all want results ASAP it pays to be patient sometimes.
Continued good luck everyone.
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Aw great post Sooze xx
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Thanks for the update Snooze
Helps us newbies ;)
Wxx
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Thanks for the update, Sooze! That's great news and very encouraging. Day 5 for me today - as you say, patience is a virtue ( I'm not usually that virtuous, but I'm trying)! :) ;) xxxxx
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Glad you are feeling upbeat Sooze and interesting about the alcohol :drunk:
I can see you having good times ahead :)
Hurdity x
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Hi all, as I've now started my 6th pack of Tibolone and have therefore completed 5 months of treatment I think now is a good time for an update.
I've continued taking it mainly at mid day (or thereabouts) for those interested.
Concerns from my last update - sensitive skin & dry eyelids & neck have resolved, I have reduced the Vagifem to every 4-5 days but continuing with small amount of Ovestin externally every night. This is continuing to manage and keep the VA well under control.
No return of the headaches, had maybe one or 2 twinges lasting seconds since last post but nothing else.
Had a couple of short lasting hot flushes - when I say short I mean 10-20 seconds when I've woken up.
Hair. I think my hair is growing faster than it has done for a while over winter but is no thicker. No increase in amount of body hair, but again growth is quicker, probably more like it was 10yrs ago.
Had a couple of episodes where I've felt a bit restless at bedtime where I've been a couple of hours late taking my dose. I've also had 2 panicky episodes when trying to get to sleep. Not too bad, but annoying as I've not had these for a while.
Joints pretty good, flexibility improving still and back to regular exercise following Xmas cold. I appear to have lost 4lbs, but not sure how, and I think my body fat distribution is changing. My waist is getting more defined, stomach a bit flatter (possibly).
Libido - pretty much the same and nobody is complaining ;)
So still all positive, as far as I'm concerned, and massively better than what I was 'putting up with' before Tibolone. I do think that unless you experience intolerable side effects then it's worth trialling for at least 4 months to see how things settle out.
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Great update Sooze
I'm on pack 2 and still feeling ok xx
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Thank you so much for sharing, Sooze! This is very encouraging to us newbies. I'm so glad you're feeling much better on this regime! xxxx
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Just a caution and a heads up for those on or going to try Tibolone. I think I have a problem with Tibolone and diet ginger beer - yes I know it sounds strange but here's a bit of background.
I gave up all diet fizzy drinks over 23yrs ago, before I got pregnant with my 1st child. I'd progressed to regularly drinking 2 cans/day & felt it might be having a detrimental effect on me. Recently (last 2yrs) I've drunk a can diet ginger beer maybe 4 times/week up to the middle of last year, when you couldn't get it at our local supermarket. Now it's been back in stock since maybe last Oct, and I've had weeks when I've not drunk it, but recently gone back to my regular drinking (with evening meal around 7pm).
It occurred to me a few days ago that maybe this might be interacting with the Tibolone, so I've stopped drinking it and switched to fizzy water with fresh lemon.
Well........it may be a coincidence but my libido has taken a turn slightly upwards and I'm settling better at night. Whether non diet drinks would have the same results who knows, but I'm keeping off everything except water & lemon & see how it goes.
Just might be worth dropping the diet drinks for those who aren't having a libido improvement on Tibolone.
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Omg Sooze how interesting !
Thanks for the heads up, I love my Diet Coke x
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Great updates and I'm about to join the Tibolone tribe!
Will post updates as and when. Thank you ladies all so much for sharing your experiences!
Abby xx
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Forgot to congratulate you Abby !
I really hope this is your answer x
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Fingers x'd! and if I feel ok maybe adding testosterone too is way to go.. I've read good things about this combo.. For me I think the weakly estrogenic properties of Tibolone will work.. but who knows? will keep you all updated!
Abby x
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Thanks, Sooze! I'm thinking it's probably the aspartame in the diet drinks. I haven't drunk fizzy drinks for years after a nasty bout of gastritis in peri. I try to keep quite 'clean' with what I eat and drink now. I'm also trying to completely drop my antihistamines and wonder if these are blocking the Tibolone somewhat. I think it's a very unique drug indeed, and who knows what may interfere with its actions?
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I'm so pleased for you Abby! Personally, I think you'll be fine on just the Tibolone. You'd probably have a huge fight on your hands to be prescribed both! It's in various studies that Testosterone shouldn't be used with Tibolone, although I know at least Blakeygray is (but she's doing it off her own back after buying the Testosterone gel abroad). Just take it a day at a time - it takes time to adjust but we'll all be here to support you! :) xxxx
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Abby wait a good while on Tibolone
I think when we take Tibolone our bodies are all different how it is converted into mimicking E, P and testosterone . You may have the good effects of the testosterone type
I've probably worded it all wrong but hope you understand ! X
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Yes I read that too (testosterone not recommended) .. I think it might suit me just fine.. Will give a 3-4 month trial a go and see how i get on
definitely the oestrogen only route is not working for me, so time to try something different.. I've read some good reports and this forum has been a godsend!
thank you ladies!
xx
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I'm the same, oestrogen only is icky for me, I might as well have nothing as the symptoms are horrible
I can't even explain this on Tibolone, it just makes me feel different in a good way x
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I have just started my first pack and only took one pill I took it at ten at night and then had terrible stomach cramps that woke me up,the next morning I felt wretched dizzy and spaced out Im scared to carry on to be honest Im a childminder and cant afford to feel so yuck and that was the fist pill !!
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Anjia, this is completely normal! Seriously!!! If you check into the 'main' Tibolone thread that was started by Suzanne1967 you'll see that this has happened to all of us. Give it a bit of a rethink, and maybe join us there? We'll support you! It may very well be very worth it for you in the long run. :) xxxx
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I no Tempest but I really cant be feeling like that for weeks looking after small children Its such an awkward bloody predicament I have had some terrible flushes at night keeping me awake I really need to sort things just dont no how I can do it
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Hi Anja,
Look at it this way..... yes you may feel rough the first few weeks but then feel wonderful ;) even other HRT prep you will have some side effects in the first few weeks. My stomach side effects only lasted a few days.
Some ladies on here have had very few side effects, that may be you.
Risk nothing.......gain nothing! just give it a few day weekend is close.
Wxx
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Very wise words there from Warwick, Anjia! ;) :) xxxxx
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HI Warwick yes the weekend, I will try again I think what time of day do you take it x
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Anjia,
I take mine at 11:00am but lots of other ladies say it's better for them to take around 7:00pm. Find what time suits you. It's all trial and error the first couple of weeks. It may be best to take your around 3 or 4 in the afternoon which will be just before children leave, just a thought.
Wxx
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Ditto re Warwick's wise words, I didn't have any side effects when I first started on Tibolone but also didn't notice any improvement until day 14.
I take mine in the morning about 7.30 and by the time I've parked up and walking into the office, I'm energised and ready for the day.
Please don't give up, it does help but our hormones need time to adjust and settle down.
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Can anyone confirm hair loss not a problem on T?
I've read some contradicting reviews/statements that say it is NOT a good idea to take if you have already had hair loss. Mine has steadily thinned and dropped out since last year when i had the BSO - so it's obviously related to hormones. I do have new growth since being on v low patch dose (25)
am hoping that starting Tibolone won't make it anyworse
Any thinning? hair loss?
Or hair growth? thicker? (i'd love that to be a side effect for me!)
Thanks ladies!
Abby x
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Abby, I don't think anyone has reported hair loss on Tibolone here. It's weakly androgenic so shouldn't be a problem to you! Relaaaaaxxxx.......... :) ;) xxxxx
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:P
Ok.. still waiting for the Doc to ring!
Abby x
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Hi Abby
As you know I'm a fellow sufferer
When I started testosterone gel I initially felt my hair was better condition but after a few weeks the shedding started again...was this the gels fault or was it going to happen anyway ? Bearing in mind it'd thinned rapidly WITHOUT testosterone
So, starting Tibolone was worrying for me regarding the hair (or lack of). So far nothing bad to report (about 5/6 weeks in. It's more manageable and I condition it each wash which I never did before as it made it even more pathetic looking. Personally I think it's a bit thicker but am also mindful that my body may not have adjusted yet to how it's going to allot the hormones and in what ratio
I wonder if the loss reported is because those ladies converted most of the Tibolone to testosterone and not balanced out the 3
Only time will tell I guess x
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Annie that's great news! and thanks for letting me know.. I'm waiting by the phone to see if the doctor is going to ring and prescribe it to me so I can get on with it!!!.. I hope so.. I've waited long enough and it sounds like it might be the missing link for me hormone wise...
Abby xx
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Yes that's great.. Just got off the phone with doc.. will pick up tomorrow!!!!!
This is great news for me!!!
I'll post a diary update xx
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Aw I'm really pleased for you Abby !
My hair might deteriorate yet and I might not know for a while but my mindset is I can replace my hair I cannot improve other things that Tibolone may do x
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That's great news, Abby! Don't forget to join us over at Suzanne1967's thread. It's where we all mainly post. I'm excited for you! :) xxxxx
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Last night well early eve went out for a meal I had two white wines you would have thought I had been drinking all night at a party, I must have woke I dont no how many times with the most awful flushes and night sweats whats that all about! Feel bloody dreadful today.
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Anjia,
Yes if you look at my earlier entries you'll see I had the same with white wine/prosecco for a few months. Oddly red was OK, not that I normally have more than a glass maybe twice a week. I started on Tibolone last Sept and by Xmas I was OK again with white wine (and champagne). I'd just avoid it for the 1st 3 months and try a small amount again then.
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Anjia
Yep - white wine gave horrendous headaches. Hope it settles by the summer ;D
I do like a drink so been having Malibu & coke and fine with that........it appears to be white wine!
Wx
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Strange that ? Oh well Vodka and tonic then !!
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I've found my desire to drink has diminished on Tibolone (good news!) and am drinking less.. I am not suffering from any kind of hangover type things, hopefully will result in shifting the pounds!
hair seems to be improving (but could be imagination only on day 6!)
hope you are all well xx
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Wow Abby your doing really well with Tibolone ;)
I'm hoping to shed some pounds as not drinking as much.
Wxx
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I feel ok.. nothing much to report, apart from feeling a bit swollen in the boobie area.. Hopefully will settle down. The only thing I really want to get better is sleeping, I'm still waking 2 or 3 times a night.. :(
I think it will take a few weeks to settle in no?
Abby xx
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abby do you get night sweats I am sleeping better its just night sweats wake me ?
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Aching today feel wretched one week in cant even have a glass of wine whats the point of this bloody drug what if I take it for three months and still feel the same fed up !!!!!
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Bless your heart, Anjia! It's very early days - you're withdrawing from your previous HRT too remember!
Join us over on this thread:
http://www.menopausematters.co.uk/forum/index.php/topic,33817.0.html
It's the main Tibolone thread where everyone posts, so you'll be more likely to get input and support there.
Sending biggest hugs your way! xxxxx
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I no Tempest but I am so fed up its like you cant just live your life theres always some hic up that starts I was talking to someone yesterday shes had the op TAH and shes never had a flush or any problems so no need for HRT how come I think, makes me want to scream glad for her but me !!!
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Did she have her ovaries removed too though Anjia?
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Hi Anjia - sorry your feeling rough at such an early stage. You may find after the first month you feel fantastic ;) lots of women swear by Tibolone and say it's given them their life back.It's always more difficult changing from one HRT to another.
As you've read my experience has been very rocky :( 1-4 weeks were horrendous 4-8 better but still more bad days than good. I have just started week 9 yesterday. I will give it the full 3 months to see if I get my life back.
I was on 3 pumps of oestrogel with separate progesterone b4 I changed.
Try to stick it out otherwise you may always wonder if it could have been the answer!
Some ladies (seems all my friends) have no problems where others like me get everything and more.
Wxx
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All the blurb says to allow 3 months for tibolone to work, I'm assuming that's why we get 86 tablets per prescription.
I know I was impatient and wanted results the next day. We're all different and process drugs individually.
Stick with it. I know it's hard but don't give up.
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Hi Blackygray,
How long before you started to feel better? and are you still using Tibolone?
Wx
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Thanks so much I had a bad day yesterday bit better today, though I just found a few spots on my face ! Cant remember the last time I had a spotty face x
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OH and sorry Tempest you asked about a friend who had a TAH she kept her ovaries thats prob the reason then .
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Anjia
At about day 8 woke with a big red pimple on my nose...... reminded me of when I was 14 lol went after a few days, no spots since.
Tibolone is a true roller coaster ride for some of us ::) good one day, bad the next. Hopefully there will be ore ups than downs.
Wxx
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Hi Blackygray,
How long before you started to feel better? and are you still using Tibolone?
Wx
A couple of weeks and yes I'm still taking 2.5mg a day. I had a hysterectomy at 36 in 2002 and started with menopausal symptoms roughly 6 months later.
I started taking Tibolone 3 months ago, I wasn't aware of, or prescribed anything previously.
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Well not sure now what with the spots I have noticed that my clothes are getting tighter I cannot stand this it gives me anxiety I had an eating disorder but am now a size 12 and feel happy with it.Please tell me this will settle I am not eating anymore than usual maybe I could step up the exercise ?
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I've gained some lbs too but I know my appetite has increased
If you aren't overeating maybe your gain will settle and it'll come off ? I'm afraid I don't know for sure
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Hi Anjia
I was bloated the first few weeks and got some spots. Both settled after first pack Since starting Tibolone I have lost 41b.
Wx
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Fab news Warwick thanks x
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Had the most awful night last night waking up in a panic flushes just tossed and turned all night this hasent happened for ages and I cant stand the thought of it.I wont be able to stay on Tibelone I dont think its going to work ?
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Sorry to hear this Anjia. Were you getting flushes on your previous regime - and what dose were you on? Although the usual advice is to keep going with it, it sounds like it is quite tricky transferring to Tibolone from oestrogen only HRT and especially re the different doses (if you were on a higher dose of oestrogen before changing over). Can you keep going for a bit longer as normally the effects on Tibolone are quite dramatic after the first 4 weeks (according to the research - but this is of course in woman who were not on HRT to start with and probably not TAH/BSO either!
I hope you have a better night tonight...
Hurdity x
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Hi Hurdity for the last four years I have been on estrogen only I started with on 1mg tablet then after about a year 2mg I was doing fine but then I decided to have a go at a patch as I believe its meant to be safer anyway I never really got on with the patch my gp put me on 40mcg which was much to low then it went up to 50 but still I could not get on with it Estrodot it was.My main problem was anxiety it did help with flushes though so to be honest I dont no what the hell to do was estrogen causing more anxiety when it was to high or to low sorry to ramble on and do hope you understand all this I dont like the thought of Tibolone side affects for two more months.x
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I do feel with any hrt you have to prioritise what symptoms you want relieving and work on that basis
I've been on oestrogen hrt for 18 years after my hysterectomy age 32. My symptoms back then were all physical, night sweats, itching and fatigue etc and 2mg elleste solo completely eradicated them all for 13 years. At 45 I was literally thrown into it all again but with different symptoms and whilst still on oestrogen....crashing fatigue, social anxiety, low mood, no libido, up and down weight, ridiculous allergies etc
I changed to estradot but I realised I can't tolerate high doses of oestrogen anymore so tried testosterone gel too as by then my ovaries seem to have disappeared. This did help somewhat and I wouldn't rule it out for the future but wanted to try Tibolone. I feel lucky that I seem to have escaped many of the nasty side effects so far (just started month 3) , my priority is social anxiety which Tibolone does seem to be helping the best but some way to go too, but a definite improvement
My weight has increased and before I started this that was a priority but it's not a deal breaker right now, as my emotional wellbeing is more important
I hope you find the right regime for you
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Another update as now on month 7.
I have had the odd anxiety blip day, and day where I feel a bit 'off'. No flushes of note though.
I am managing to exercise 3-4 times week, and really enjoying it. Nothing major, exercise bike, light weights & stretching, around 45-50mins. Weight loss is 5-7lbs (depending on the day) so far, and I am seeing a pretty good toning results - better than I've had for maybe 10yrs.
Diet - Much more controlled, and healthy. Yes I do have 2 squares of chocolate (good quality, dark) most evenings, but don't feel a need to have more than that, and my crisp consumption is almost zero now. I now realise a fair bit of my snacking was comfort eating, because I was feeling so crap.
As a result of the diet tweaks & exercise I'm not getting the bloating I was getting before Tibolone. Still have long way to go with the tummy, but it's encouraging to see even a little progress.
Libido, doing very nice thank you ;)
As I've said previously Tibolone isn't a cure all, and I think it's too much to expect every day to be amazing, but for me, it is continuing to be so good that it's not worth trying anything else (along with Vagifem & Ovestin).
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Hi Sooze
I agree with you completely
I still need my vagifem but have been suffering terribly externally and wondered about ovestin but worried about it being oestrogen and oral sex so am trying YES oil based VM, early days but not so sore, sadly Sylk stopped working its magic
I did try to google ovestin and oral sex but didn't get much info but I guess if I used it hours away from being intimate it could work for me
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It has been five weeks for me and so many ups and downs.At the moment I have the most terrible joint pains in my legs and feet and waking up about five in the morning with awful nausea I am really trying to ignore any side affects but I really cant the joint pain is getting me down,I am thinking of stopping today but the only thing is I dont seem to have so much anxiety?Oh what to do.
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Hi Anjia,
Yep me too regarding the joint pain >:( mine is in both hips. Sometimes wakes me during the night and also some time I am like a 90 year old...... BUT like you anxiety has improved. Still have the spacey hangover feeling every morning.
It will be 3 month for me on Thursday
Wxx
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I'm getting stiff aching joints but not every day. X
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Hello ladies.
I've only been taking Tibolone for three weeks plus I stopped Evorel Conti abruptly at the end of December so I guess my hormones are all over the place however today my palpitations are very strong.
My anxiety usually takes the form of internal shaking and quivering and this has increased as well.
Any words of wisdom ladies? Does this just sound like an early side effect of Tibolone or just hormonal adjustment that will settle. Oh and of course I still flush often, that has never gone away no matter what HRT I've taken. So fed up!
Wishing you all well and I look forward to any responses ladies.
K.
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Hi Kathleen
The first few weeks (6) were horrendous for me. I have come a long way since the first few weeks. As I've said before it's such a roller coaster my early symptoms were:
Jelly legs
Internal shakes
strange sensations in my head
lightheaded
All these started to improbe at about week 8. Also I went straight onto Tibolone from being on Esrodol for 7 years without a break. Had a word with pharmacist who said the symptoms were more likely to be stopping esrodol as my body will have gone into shock.... :( Dr never said anything about that!
I am seeing more benefits but I still think my body needs more time to adapt.
Take Care Wxx
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Did you have joint aches at first Warwick I still have flushes at night ?
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Anjia
Joint pain has been off and on since week 2. Been bad this week esp yesterday. Feels better today.... so bloody up and down :(
Because the anxiety/agitation is better I don't want to stop. Also on other forums have read the joint pain and spacey head had suddenly stopped for other women. Fingers crossed xxxxx
Wx
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Hello warwick.
Thank you so much for taking the time to reply.
Odd that you should mention strange head sensations as earlier mine felt as if it would explode. Thankfully that particular surge has calmed down now but it was scary, I worried that I was going mad.
The internal shakes have been a common symptom for me but I've rarely had muscle aches and pains so if that develops I will know to blame the Tibolone lol. I will certainly keep you all updated.
Wishing you well.
K.
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OK another update just as a possible what not to do. As things were going so well I thought I'd try moving the time I take Tibolone to earlier in the day, as it would be more convenient for me. I moved from my usual 2.30-3.00pm slowly to 10am hoping to get down to 7am, by taking it maybe 15mins earlier each day.
All I can say is this was horrible. Started getting flushes first thing on waking, anxiety & sleeplessness increased and generally feeling 'not quite right'. Have now moved back to 3pm and feel so much better, more relaxed, no anxiety and flushes gone again. I can't believe the difference. I would encourage anyone trying Tibolone to experiment with the time they are taking it, just in case they too have an 'optimal time' for best results.
It may not be the most convenient time for me but I'm sticking with it!
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Wow that's incredible Sooze!
What week/month are you on now ?
I might try and dabble then with times. Out of convenience I do bedtime (roughly midnight) and there's been about 5 odd occasions I've fell asleep and forgot to take one so just skipped that day x
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Annie0710,
I'm almost at the end of month 7. I have dabbled with timing before, I started taking it when I got up (to see what side effects I got), and moved it later to see if it made any difference to how I felt. I sort of setting into taking it mid afternoon, but my work schedule has changed, so earlier morning would now be more convenient. However if my body prefers the afternoon I'm sticking with it.
I've also tried later in the day (with evening meal) but I found I felt really restless when I went to bed and couldn't get settled/relax easily, so I didn't try any later than that. My joints also feel much better when I get up when I take it mid afternoon.
HTH.
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Are you sticking with Tibolone now for the foreseeable future ?
I feel better on this than any other hrt I've tried but aren't seeing improvement really with social anxiety so may fess up to the dr and try meds x
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Annie0710,
I can not envisage ever coming off Tibolone- for me it really has worked really well, taking everything into consideration. I was at such a low before I started it. Horrible VA, plus really tired and quite depressed about the future.
I have history of flat emotions, suicidal thoughts and low libido on the combined pill in my late teens and only took it 3yrs, Femoston 1/10 made me feel almost similar. I though all HRT would make me feel the same, but not Tibolone.
I haven't really taken any other hormones except for around 9m on the progesterone only pill which was ok emotionally but bleeding was all over the place.
Tibolone has given me back my 'sass', energy (don't fall asleep in the evening now), joints are better (not perfect just better) and libido is as good as in my early 20's!
Yes I have days when I feel a little 'off' but most days I actually feel quite happy and optimistic more of the time than not.
Whether my response has been enhanced by low hormone use through my reproductive years, no other medications to interact with and being post meno by around 2yrs before starting it I don't know.
All I can say is that I feel very lucky that it has worked.
HTH.
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I'm 2 years post too
I'll pluck up courage to see doc about the other problem then, then maybe, just maybe I can fully get my life back
So glad you have a success story Sooze xxx
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Same here Sooze, day 130, week 18 and I'm still feeling physically and mentally 20 years younger.
I'm waiting for my blood test results and should find out what levels various hormones are at but the nurse told me that my gp is happy for me to stay on Tibolone as long as I remain fit and healthy.
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I stopped tibelone a week ago now and went back to ellesste solo estrogen, feel so tired in the day because I just cant sleep at least with tibelone I slept well such a shame about the other side affects or I would have stuck with it.
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Try a phernergan tablet (antihistamine) every other night until you get back a sleep pattern
Tibolone gave me insomnia in the early weeks and phernergan worked a treat. Take about 2-3 hours before your bedtime x
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How are you all getting along with Tibelone I stopped 2 weeks ago because of dizzy spells feeling wretched at the moment back to estrogen only my hormones are all over the place wish It would have worked for me.
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Hi Anjia,
Really hoping things settle for you soon. This hormone business is rubbish >:(
With me - anxiety/mood have really improved better I've felt in years, however the dizziness, faint feeling I get during the day is still bothering me. I'm not sure what to do it is week 15 tomorrow. Still better than the first 2months when I had so many symptoms which I think were due to withdrawal from oestrogel after 7 years of continuas use. Now I think I'm experiencing side effects from Tibolone.
I see my Doctor Tue so will keep you updated.
Take Care Wx
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Hi ladies
I don't know what's what with me at the moment. The last week I've not been great BUT I've had loads of energy !
I'll start with pros;
Energy
Sexual response good
Sleep good
I'm sure new scalp hair is appearing
Cons;
Bad palpitations (really wondering whether it's general anxiety now :-( )
Still have social anxiety (pre Tib too)
Double vision gone berserk
Strange muscle spasms in left hand
Tingling in left arm and hand
Cramping in feet still (pre Tib too)
Some low mood but very up and down
I'm not sure if something else is going on with me or it's hormonal. At the moment during this I'm taking a Tibolone every other night . Oh yes and my ear problem is playing up too (now 12 weeks since both drums burst), vibrating tinnitus in right one and the pressure sensations in neck and both ears still, I'm continuing to pop them as and when needed
I need euthanising I think x
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Hi Annie,
You were doing so well a few weeks ago. Funny what you say about your ears, I too have had strange fullness in my ears along with dizziness ::)
Really fed up today, I'm sure hubby is too :( libido is worse than pre Tibolone and to top it all we are due to go away next week.
Take Care Wx
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Annie,
Taking every other night is probably giving you extremely peaks and troughs - have you tried ½ tab every day? This would even things out more I would think.
Re cramps, are you keeping well hydrated? Always find I'm more likely to have cramps when I drop my fluid intake.
HTH
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How would I break the tablet ? Does it have a line through it ? I can't remember lol
I'm not sure about these palpitations (it's not a new symptom, been plagued through meno but it's strong this last week) so wasn't sure if it's anxiety ? Ears I think are ongoing from my eardrums bursting
Cramps - could be to do with hydration or potassium so I've been increasing fluid intake and by drinking coconut water
I can't really pinpoint what's what but I have really embraced this energy, my idea was to clean through the palpitations to make them less noticeable and although I've been tired I've also had energy. It's just that when I do too much (for me, which isn't a lot) my back goes and I have to rest it x
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I haven't been around too much recently but thought I'd pop in to give a month 9 update.
Not made any major changes to my regime, Tibilone taken between 2.30-3.30pm, Vagifem only 1-2 times per week now and Ovestin externally 3-4 times per week, with a smaller amount (tube lasting around 4 months rather than 3).
Still massively better than I was pre T. Energy excellent, exercising 3-4 times/week, and sleeping brilliantly. Occasionally slightly warm on waking, but I couldn't call it a hot flush as such, and no hot flushes at other times.
Libido, some slight peaks & troughs - what I would call 'pretty normal', more peaks than troughs too!
Still get the odd episode of 'depressive/panic moments', but they do pass quickly. They seem to occur mostly just before bed, and I can now rationalise them quite well and get through them.
Diet seems to effect everything. White wine is still a bit hit and miss and can give me hangover symptoms even after 1 glass, but not always.
I'd never has the 'wobbly' feelings that some of you mention until last month. This was while in London on holidays and ate more meat than usual (was Veggie for 25yrs and fell off the wagon 5yrs ago). At home we're Veggie apart from maybe 2 meals/week and that's mostly fish. I'm not sure if there is a link or not but since coming back home I've not had the feeling again.
Weight hasn't dropped further, but I'm looking and feeling more toned so I'm not unhappy about that.
Skin & hair OK. No increase in body/facial hair since last update.
Joints on the whole better. Occasional lower backache- as I used to get pre meno which was linked to my cycles.
Oh and one other thing ....sass. I've got my sass back, plus my sense of humour seems to have returned. I seem to find more things funny rather than irritating.
So still really positive for me.
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Excellent Sooze !
Please keep popping back to update to help others. Even if it's "see above, still the same!" Lol xxx
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Only Day 2 and I'm so bloated and uncomfortable with fluid retention. Can't be weight gain after only 2 days! My GP had suggested that after stopping patches, I wait only a day before starting Tib.
I was wondering how long the oestrogen is stored in the body and perhaps this is why I'm so swollen. I look pregnant.
Anyone have similar experience?
:)
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Yes this happened to me Pollyanna I put a few pounds on in a matter of weeks ! I also had terrible dizzy spells and muscle aches the only good thing was it helped with anxiety which I loved and libido was much better but I could not stand being dizzy I have an active lifestyle and piling the pounds on was awful.I must say though some ladies on here are doing fine on it I was gutted it dident work .
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Hi Anjia
Oh... what a shame. I've never experienced this before. I'm tempted to cut the pill in half to see what that does.
I've had a tiny amount of supper but feel so full.
Iv no idea how long it takes to feel the benefits. It may be that I'm getting this because I've been on oestrogen (only) for so long.
Feeling dispirited right now.
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Oh gosh thinking about it I felt so full after meals to ! Dont worry to much it could be fine for you give it a go I was on estrogen only like you I am now back on it.
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Following this thread.... :)
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Oh my goodness, how the time flies......just over 10 months on Tibolone.
So I picked my prescription last month (and the current 3 month pack) from Boots rather than my usual pharmacy that's attached to my surgery, and been given Lival rather than Tibolone and reassuringly I don't think there's any difference.
The depressive/panic moments have almost completely gone - I can't remember when I last had one. Headaches the same. Had the odd half hour tension headache that could be cause by work pressure TBH.
Weight stable, energy good, no change in hair or skin since last update. Wine less likely to cause issues but consumption pretty low. Libido on the up at the moment, more than last post. Hot flushes, nil.
Annoyance, knee joints particularly the left. It's almost like they're 'over mobile', to the point of hyper extension then almost giving way and pain at the back of the knee. Only happens at the most 2-3 times a day, and I'm wondering if I'm overdoing the excercise bike, but I'm not having any pain or discomfort when I'm actually exercising, so might see a physio for that.
The only other thing is I've suddenly become aware that I'm actually a 'grown up' with 'bags of experience', so much more than my work colleagues. And I don't know whey I haven't thought this before. I also have a hankering to 'be creative', write a book or something when I haven't got a creative bone in my body...........wierd? Is this another meno symptom?
S x
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Brilliant update
Sounds like you've got your mojo back x
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Sooze, it's so lovely to read your upbeat post.
That's given me some inspiration. I'm back on Tib and so I've probably only been on them for 3 weeks. Ha.... I've a long way to go.
Didn't look back at your previous posts but, how long would you say it took you to notice s positive difference?
The one thing I do like, already, is that I don't have the fluid retention I always had on patches.
X
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Pollyanna,
I actually started to feel 'different' after 3, maybe 4 days, probably because I hadn't been on any systemic HRT for over 4yrs. Big changes kicked in within the 1st week with improved sleep, reduced flushes VA improving and libido coming back.
I'm not sure anyone else here has gone onto Tibolone without being on some other systemic HRT immediately before - I'm sure someone will chip in if they have, but I think my success is partly down to that. Yes I experienced various side effects, all of which have been temporary and I had no negative mood effects like I had with Femosten. Plus the libido improvement has been immense, so overall I feel that this is as close to perfect for me as it's possible to get.
S x
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Sounds great Sooze - good news stories are always welcome - now go and unleash that creativity!!
Hurdity x
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Yes, that's all really great Sooze. Hurrah!
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The interesting paradox with tibolon is that, I'm feeling energised....but also really exhausted.
Had tried taking things for sleep but I don't like the after affects.
I'm hoping that the sleep thing will improve, the longer I take them. My eyeballs are burning - I'm so 'tired but wired'. 😳
Does the ability to sleep more quickly, improve?
Please say it does.
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Pollyanna,
I can't say that I had any sleep problems ever, except dropping off when I tried taking Tibolone too late in the day - tired but wired could sum it up. What time are you taking it. If evening try switching to 12.00 -3.00pm. Works well for me.
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Snooze,
How bad was your VA prior to Tibolone?
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nicolcarrie70,
Totally shocking. I was on Vagifem but even taking every night I still couldn't face the thought of sex as it didn't help externally, which was the main problem. Spontaneous splitting of the labial skin (what was left of the labia wasn't much TBH) was a constant problem.
The combination of Tibolone, and Ovestin (externally) is what solved my VA. I only use Vagifem 1-2 times/week now, whereas I use the ovestin almost every night (a very small amount does the trick). It rejuvenated the labia and I can't remember when the skin last split. I would also say that my pelvic floor feels 'more elastic' and supported too.
HTH,
Sx
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Hi everyone.
I guess I'm three weeks into Tibolone now. Awaiting an appointment with meno clinic in Oxford.. can't come quickly enough.
Today I am literally exhausted but have terrible anxiety too. It's definitely the medication. I feel 'burned out' but not having done anything.
I also have developed a very strange taste. Metallic almost. It's haha, like the taste I had when I was pregnant, 30 years ago.
The dull ache in pelvis has gone now but I am so so tired, anxious but also a bit depressed too. its' like, every emotion is coming out to play. Oh, also brain fog today too.
Obviously I'm noticing these things because they aren't normal for me, and are not a reaction to anything that might be going on in my life.
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Hi Ladies,
I'm on my 10th week of Tibolone, thought of stopping a few times but my doc keeps saying to stick it out another month etc.
My main menopausal symptoms were....joint and pelvic pain, low mood, vaginal dryness, low libido, dry flaky skin, dry eyes and little energy. Tibolone has helped with most of these awful symptoms and it has taken time but I'm now getting heightened anxiety and insomnia, oh and leg sweats. Also, I bled for 7 weeks on and off but thankfully I think that's finished with.
I do suffer from anxiety anyway and I also have an under active thyroid. When I do nap, it feels quiet an anxious sleep and I often waken with a sore neck and shoulders from being tense.
It really is trial and error on HRT isn't it...I used to think that when I reached my 40's my kids were grown and I'd be more career focused and go to lots of social gatherings, how wrong was I. I don't work now due to the anxiety an then going through quiet a bad menopause. I'm hardly out socially as I'm so tired and done in with it all.
Will we ever be back to our true selves....this should be our prime years xx
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Hello everyone
I've just finished my first month of Tibolone.
Jan Brockie from the John Radcliffe called me last week, and was able to offer me a cancellation appointment tomorrow which I'm grateful for.
I seem to be having strange dreams on this medication. Very disturbing. And I also feel as if I have a depression and brain fog. Almost like im perceiving things in a negative way.
As I'm trained in counselling and psychology is my speciality, I know myself very well. I'm insightful and have noticed this change to be related to taking Tibolone.
If I read research papers on it, they tend to highlight Tibolone as being the HRT that helps remove depression. For me it seems to be causing it.
I feel as if I should consider taking an anti depressant if things don't improve, but then I'd be treating side effects, rather than an organic depression.
What a mess of confusion.
I live alone as well so, I don't exactly have family for support it distraction.
Anyone else get depressed on Tibolone?
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Hi all,
Like Pollyanna, I've just completed my one month on Tibolone (I take Tib at 7am)...but unlike Pollyanna, i'm finding my one tablet daily has changed me in so many ways (for the better) my anxiety has completely gone, joint/hip pain, very low mood, dare I say my libido is back and no cheese sandwich for me now ;) I have noticed a few night sweats, but I can cope with that. I feel ME again, before the menopause. I didn't want to tempt fate, so haven't been on here unless it all went pete tong. I think...at last I've found an HRT that is suitable for me. Everything is still crossed....
Pollyanna, so glad you got to speak to Jan, she's lovely and very understanding. I'm sorry to hear that you're not feeling great on Tib. I hope with help from the Meno Clinic, you find the right HRT for you. Don't feel alone, you have all of us on here.
Claire
x
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Haha... Claire, you make me laugh. I sense we have a similar sense of humour.
I'm sure my libido would be tickety boo, if I had a bloke in my life. Never had probs with libido before. Always been healthy in that department. You never know, if the libido becomes super charged in a few months, I may be a danger to all men out there.
Brill that you're good on Tib. Love to read the positive results that some people have on it. That inspires me. I think the changes in me are slow and subtle. The skin on my body, and my hair have been amazing since I started Tib. So, the cosmetic changes have been very positive, compared to the patches I'd been on for almost ten years.
I'm sure I'm in a minority here but I hardly ever had night sweats or hot flushes. The odd few i had, never bothered me. For me it was always pain/low energy and the 'blues' that I used to get in puberty and pre menstrualy.
So ladies.......Saw Jan at the John Radcliffe today. She is the first 'specialist' I've spoken to in the past 5 years, since moving from Bristol, who I had an intelligent conversation with, and who spoke to me about my particular concerns.
I took along with me, various print outs of past Dexa scan readings, dates of hysterectomy, private consultants recommendations, etc, etc. I wanted to have all the information for her.
What was interesting is that when she saw my last serum oestradiol level result, she said it was very low, particularly as I'd been on Estradot for 9 years by that time. My result was 83 pmol/L . She mentioned that some women seem to have problems with absorption from patches and that I could be one of them. Said gel was better delivery. I do feel a bit frustrated that this wasn't picked up by my GP a year ago when I presented with a lot of joint pain.
We left things today by agreeing that i continue with Tibolone for another two months, and then if I still have aches and pains, to use some Oestrogen gel along with the Tib.
Let's hope that's the right way forward.
x
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I wish my GP would have suggested some estrogen gel with Tibelone when I tried it as was having terrible flushes it did help a lot with anxiety for me maybe I should give it another go although I did put on weight while on it.
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It would've been interesting to see if I'd have felt better adding gel to Tib. My night sweats came back
But I'm doing ok on gel and testosterone for now so I'll leave things be
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Yes, she suggested the possible use of gel with Tib, because I don't have a uterus/cervix, so not risk of endo cancer.
I am intrigued though by what she said about some HRT patches, not delivering enough oestrogen and also some women not absorbing it. I had been on Estradot brand for some many years but to begin with (ten years ago now) the doctor I had, prescribed Evorel. The only reason I didn't stay on those is because the size of the patch was almost the same size as my bum cheek. Ha! Huge!
It would be awful if my pain and problems with so called Chronic Fatigue Syndrome and Fibromyalgia were in fact, me being oestrogen deficient. Jan Brockie had mentioned that I am very 'slight' and would need the oestrogen for my bones.
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Wasn't expecting to do another update so soon but have noticed a couple of changes.
Firstly libido has dropped a bit and would say it's the lowest it's been since I started Tibolone. Still much better than it was pre Tibolone but a bit worrying. Also getting a few more aches and pains and feeling a little down mood wise.
The mood drop I think is because I've just come back from a fantastic holiday - frequently feel down on the return to work after so much fun!
The libido and aches makes me wonder if I'm not converting the Tibolone to testosterone as efficiently- whether this is due to holiday diet changes or there is a difference between Tibolone and Lival? This is my second month of Lival and I have another 2 months to go.
I think I'll watch how the libido goes the next month or so and if it drops further pop back to the GP and ask forr a smidgen of testosterone- if she can't prescribe I'll ask to see the gynaecologist again. I have zero other menopause symptoms and had no androgenic effects from Tibolone after taking it for 11months so I'm hoping there won't be any objections to a bit of testosterone if things don't pick up.
S x
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I think I converted too much to oestrogen, one full pill started giving me the jittery feeling I get with high oestrogen, so to combat that I had to halve the dose. Then came the night sweats, aches etc but my orgasms stayed good but never did get libido on it and I had low mood
Now I'm on gel I'm using 2.5 pumps successfully and testosterone has not only giving me orgasms but good libido too and aches are minimal and manageable
So far this regime isn't given me nasty androgenic effects but neither did Tibolone
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Haha Pollyanna, I believe we do!! ;D
GP's have 15mins consultation and boom...out the door, next! They truly don't understand menopause, the effects, the symptoms that can take hold of us. You can't pigeon hole us with a prescription of "one size, fits all". The Menopause Clinic said, not every HRT product is suitable to every woman. That ladies is what makes Woman Kind so GREAT! We are all different!!
In a little over a year, this will be my 5th HRT product and although I felt a little "blurgh" yesterday with a bit of joint pain, I still feel upbeat. I've not looked at my weight, but I know I've gained. I could never get on with the patches, the sticky wasn't sticky enough for me. I kept losing them in the shower or bath, so I used a waterproof plaster on top of the patch...my poor ar*e looked like a patchwork, especially as my skin reacts to plasters too, not great! ;D
My understanding of Livial (contains a substance called Tibolone). Instead of containing hormones, our own bodies break down the Tib to make our own hormones.
Years ago, when I used the contraceptive pill, once a month I would wake up feeling sick, then as soon as I was sick, I was fine. I didn't start my period until I was 16yrs and my mother thought by putting me on the pill it would regulate them, it did. I was on it until my last child was born in 94, then I stopped all together. No more sickness. I think my own hormone production was so very low, that could be the reason why the PILL or HRT, has been too strong for me?! Without a hormonal blood test (My Dr's wont do) I will never know or understand where my hormone levels are. Which is a shame they don't do it, as it would give GP's a better understanding of which HRT they could prescribe, instead of the hit and miss approach, with months/years of upset, for the patient.
Being under the careful watchful eye of the Menopause Clinic, I can call them anytime and if they need to tinker with the HRT, they can.
Claire x :-*
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Blimey.... I think I'm having one of those days where I want to quit Tibolone.
Symptoms now, after 5 weeks are, allergies galore. Allergic rhinitis has flared up. Constant sneezing and blowing nose, bunged up sinuses, itchy eyes, systemic candidiasis.
I know it well. Used to get it years ago, and it's back with a vengeance.
Also gaining weight now. 6lbs over the past few weeks.
Don't seem to get hunger pangs, but stick to my normal healthy diet. The weight gain is definitely fluid.
Hair that was looking great to begin with on Tib, has now gone brittle and lifeless. My hair is always affected by medication. Although it was never this fragile in patches.
I'm also really really tired with no motivation....not normal for me.
I have noticed, due to feeling 'blah', I'm not reacting to things as much. That might be seen as a good thing, but I feel like a zombie.
Not so good.
What a bummer.
Haven't taken a pill today as am feeling so rubbish. I'll see how I feel tomorrow but if hate the allergies. I feel like I'm loaded with cold.....only I'm not.
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Hi All!
Pollyanna, how did you go with halving your dose?
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I think Pollyanna has left
When I was on Tibolone I halved my dose as I was feeling jittery. It helped that but it then gave me back night sweats x
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Hi all,
Well happy anniversary to me..........on Tibolone a year :cake:
Since my last post the libido has increased slightly but still a bit lower that I'd like. Mood picked up and feeling very stable - no anxious/panic episodes at all. Feeling very much 'like me'.
Energy still good, although I have had a couple of evenings where I've felt knackered for no real reason. I was given Lival for past 3 months and I'm not sure that there isn't a subtle difference. I've seen my GP for a check up and she said it would be worth asking for Tibolone for the next 3 months. She did say she's still not had anyone experience the crazy libido surge I had within such a short time after starting it and she's reluctant to add extra Testosterone into the mix..... yet.
Re Vagifem and Ovestin. I've dropped the Vagifem and just use Ovestin now. I'm not sure I wasn't having a bit of a reaction to the fillers creating occasional BV.
Hair - no real increase in body hair - well I'm not being completely honest, I have 3-4 extra hairs on the back of my forearms - yes I am that hairless that I've noticed these, but they are very fair ;D
Very occasional flushes - and almost not noticeable - if I'm going to get one it'll be on waking.
The other thing I've noticed is a reduction in tinnitus and dry eyes (contacts more comfortable for longer).
I'm still getting a few aches & pains in my lower back/pelvis region, very like what I used to get pre meno, so I think that may be an indicator that Tibolone is working well & I just need to strengthen my back a bit - staring Pilates soon.
Weight has crept up a little but my diet went to pot for various reasons, but I'm getting back in control now - chocolate covered raisins do not count of 1 of my 5 a day, neither does a glass of wine!
Otherwise all going well, and the longer I've been on it the more consistent have been the result - less peaks and troughs. For me, it probably took 8-10 months for the best stability, so it might be worth keeping that in mind if you are trialing it.
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Brilliant Sooze !
Xx
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That's fantastic Sooz!
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After a week of Tibolone, i started spotting, but lasted less than a day...anyone else?
And because I'm still having the horrendous anxiety I've started to split the pill, and take half in the am and half in the pm (this is post spotting too) - was wondering if many others have done this and did it help?
I've also had another blood test - all hormones this time, not just the big two, iron and vit D studies, and full thyroid with antibody check.
Is there a thread on thyroid on here? I've looked but can't seem to find one...
Thanks everyone xx
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I've read that ladies can get spotting in the early weeks of Tibolone
There are some clued up ladies regarding thyroid here and there's also a good Facebook group too
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Thanks Annie :)
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Time for an update again.........and a few things have happened.
Saw my GP 2 months ago and reported that on Livial I though my libido was a bit lower than Tibolone. She suggested I try getting Tibolone again (had sussed out which pharmacy to go to already).
Well 1st month was OK, nothing really different but the last month wasn't nice. Had maybe 3-4 days of anxious feelings, similar to before I went on it, and a few more flushes. Then I started spotting slightly, possibly a bit more than when I first went on it. Booked appointment with GP, but it stopped before I got to see her. She wants me to see my gynaecologist just in case there is a problem, but she thinks it's probably nothing. Got my next pack and gone for Livial again.
It was almost as if I had a few days of reduced dose with the last pack, with the symptoms, so I don't think all pack are the same, which is different to what I initially thought. Will post any further changes/revelations!
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Another update and everything's fine.
Saw gynaecologist and scan revealed absolutely no uterine thickening. Measures the same as before I started Tibolone :)
Back on Livial the past couple of weeks and no further spotting, plus feeling much better. No anxiety or flushes and for me I would defiantly say there is a difference between the 2 preparations, and for anyone trialing Tibolone it would be worth getting Livial if you've had similar issues with Tibolone.
In my area it's Boots who always give Livial, where as Lloyd's and independents give Tibolone- in case anyone is interested!
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Sooze, thanks so much for doing this diary on Tibolone.
I've recently started on it myself ( Day 7) and hope to start feeling more alive again, upstairs and downstairs 😀
Have previously been on a evorel Conti, full patch made me bleed and half a patch still managed to help with hot flushes and constant tearfulness but still an “out of order†sign down below !! Haha, will let everyone know how I get on.
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Two weeks on Tibolone and I have two spots on my chin :o
Also, I seem to be a tad angry on occasion, on a short fuse so to speak.
I'm not feeling as fragile as I was before I started taking Tibolone, was crying and getting overwhelmed too easily so that's a definite improvement.
Downstairs is still out of order, fingers crossed that'll improve too.
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Are you using vagifem or anything for the vaginal problems ? If not I'd get some prescribed if I were you. You seem to be taking yo Tibolone well x
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Hello Annie , yes it seems to be going well at the moment. Just need to keep a check on my anger !!
Was trying to get my elderly mother into the local coop yesterday and somebody had parked in the disabled bay illegally and I was bloody enraged. So much so that my mother asked if she'd upset me.
I must watch that.
The thing that hasn't changed is my lack of libido unfortunately.
My energy levels seem to be up slightly too. It's difficult to say as it's only been two weeks.
I need a bloody holiday ;D
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GIve it time with libido. Mine didn't improve but my orgasms were good. Sounds like the testosterone-effect is working if you're agitated (not saying that's good) but it's such early days so you may start to want to drag hubby upstairs soon lol x
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Hello ladies this is my 1st time on this site so hope I'm use it correctly. I started to take Tibolene last Monday and have now taken 6 2.5mg so far at 1am. The first 3 days were fab but has since gone downhill a bit.
Today i have suffered shocking brain fog, the one thing i have suffered with for more than 10 years.
My sleep was slightly better last night.
Poor sleep has plagued me for more than 15 years!!! Many nights spent awake. Don't know how i am still here to be honest but i am a fighter.
Sleep deprivation has come from the menopause and horrendous night sweats.
I have never had HRT before so praying it helps.
I am desparate and very nervous about using Tibolene because of all the side effects and health problems i already have.
Its been great to read all the posts on here i now know I'm not alone.
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IF you can, give it time on Tibolone while your body adjusts. It's a great hrt if it works, like hrt I guess lol xx
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Update: thanks for your reply Annie. Yesterday after i had taken my 6th tablet well about 2 hours later i became sooooo bloated and wind OMG it was awful and very very embarrassing. It went like this until i went to bed so several hours. And also very fatigued that at T time i had to go to bed for an hour & spent the rest of the evening trying to stay awake in between running to the loo.
I am not going to take a pill today and then take a whole one tomorrow & see if that makes a difference.
The only good thing was I had a better night sleep.
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Hello ladies.
I thought I'd mention that I've been taking Tibolone for almost a year now but as I am seeing a specialist tomorrow this may change. In the time I've been taking it I have never had any spotting, muscle pains or weight gain however I still flush and continue to have other meno symptoms. Just lately I have been very fatigued and sleeping better however this may be due to my anaemia.
I was hoping that Tibolone, although weakly oestrogenic, would be sufficient as I am post meno but I am ready to try something else now in the hope of feeling better.
Take care ladies.
K.
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Hello, me again.
Meant to say that I have always been given Livial and not Tibolone.
K.
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Hi all I'm 5 weeks into Tibolene and finally all the side effects are settling down except one. My tummy is still a mess. It is active all the time with what feels like trapped wind. Also embarrassing at times too. Has anyone else suffered this? Did it settle down? Thanks for reading. (I do take 20mg of Rabeprazole every day).
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Further update on me & HELP please.
On week 6 of Tibolene.
Libido still very low.
Weight - put on 4lbs - this worries me alot
Headaches - these are horrendous and scary like sickly migraines and they are increasing
Jittery
Spaced out
Some brain fog
Sleep- vastly improved
No aches and pains
My worry now is the headaches and a feeling of being lop sided! Dizzy or falling.
Have to wait 4 weeks before i can get a doctor appointment but they really are not much help.
X
Please help.
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I never got dizziness on Tibolone but I know some of the other women did. Have you read the whole thread? I can't remember how long it took for the symptoms to go x
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UPDATE - i couldn't stand the headaches anymore so doctor has stopped Tibolene and out me on 1 pump per day of Eastragel only. However, after only 4 days the headaches have continued, i now have continuous ringing in my ears and my sleep is once again minimal and restless.
So scared of this head/ear side effect. Is it dangerous/permanent.
So need the sleep.
Doctor at a lost on how to help me.
What to do?