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[Pam Madra]

thanks for all your reply and I will discuss all the option with gynae this week. Now i know not expect any miracles so I will will wait and see what the outcomes is one tablet or stop tablet and try something else. I am bit scared to take tibilone right now truly.
thanks girls.

[warwick01]

Hi ladies,

Just looking for some reassurance please.

Im into my second week of Tibolone and experiencing hip pain in both hips. Anxiety quite bad especially since last night. I had my worse night last night with anxiety, agitation and what I think was adrenalin surges (scared me to death) I feel very clammy today.

On a positive - nausea and that spacy feeling has improved. Feel scared to leave the house (stupid I know) but I think its the adrenalin surges, as I go dizzy too.

Anyone else had these problems ?? and do you think it will improve ??

Wx

[Dancinggirl]

warwick01 - early days yet.  Do you practise CBT or Mindful Meditation.  When I get a bad night, with the brain going mad and palpitations, I find that some mindful meditation can really help.  The dizziness could well be because you aren't breathing properly and nausea can be kept under control by eating small amounts often - the clamminess may be low blood sugar.  Do you start the day with a bowl of porridge?
My hips are really painful with the cold and damp - I try to start each day with a good brisk walk, this relieves the pain and gets me breathing well. DG x

[warwick01]

Thanks Dancinggirl

Thinking about it, I did have a couple of glasses of wine yesterday eve, which may have contributed to the way I was feeling. I agree early days and the fact I have gone from 3 pumps of oestrogel to starting Tibolone which is probably not fully in my system yet.

Wxx

[Dancinggirl]

warwick01 - your odd will take time to adjust and settle - you do need to be patient.  I'd steer clear of wine for the time being - alcohol does result in disturbed sleep patterns.   DG x

[Frankie41]

Hi ladies

Just joining in on your thread here - did any of you taking/or who have taken tibolone have issues with progesterone (either your own or replacement) prior to taking tibolone?  My endo has said she thinks it's not suitable for me given the potential for progesterone-related side effects - I've had terrible issues with progesterone in the past (depression etc).  Also because I am probably still peri - although that I am not sure of, given it's almost a year since I've had a period (but possibly an effect of lucrin I'm taking to suppress my cycle, so hard to tell).

Would really appreciate any relevant feedback, thanks 

[peri]

Hi Frankie41 I did.  Noresthisterone made me depressed, I had problems with utrogestan withdrawal and I suffered with pmt throughout my 40's.  I tried tibolone but the balance wasn't right made left me sedated, and not quite with it + made my weight balloon.  I've just had a Mirena fitted and currently doing well on it.  I foundTibilone is good for some things (anxiety/libido) but not perfect.  Hope this helps x

[warwick01]

Hi Frankie41

I had problems with all types of HRT progesterone. That's why I'm trying the Tibolone.

SORE ACHY LEGS - from yesterday have had sore achy groins in both legs, really sore during the night was difficult to turn over in bed. Hope it settles soon

Wx

[CBA]

Hi I have pain in my groins too and it's much worse at night - wakes me up. Think it might be hip bursitis?

I've had the pains on HRT off HRT and still having them on Tibolone.

Really annoying and sore!

Jx

[Frankie41]

Hi ladies

Thanks for your replies.  Yes, it sounds like tibolone works well for some but not others.    That's really interesting Peri, that you are doing well on the Mirena despite your issues with progesterone in the past.  That's awesome.  I'm currently on no P (still trying to get the estrogen balance right) before adding in whatever progesterone I try next.  Perhaps I will re-visit the Mirena again! 

[CBA]

Hi Frankie

I think you have to be 'post' meno to take Tibolone although maybe some GPS prescribe earlier. Progesterone didn't suit me but it would take a few days of taking it before it became a problem. I was on Tridestra before. That worked better as only took progesterone after 3 months of oestrogen. But then I had other problems so HRT was stopped for a while.

Can you ask if you could try something similar? One warning though - although I felt great on the E for three months in many ways (lost weight, more energy, better concentration) I did end up feeling severely anxious and it wasn't until I took my first prog pill that I realised HOW anxious I'd become. I felt very similar to how I did after the birth of my first child (post natal depression) - although I was never 'depressed' I was hypervigilant and anxiety through the roof...

Tridestra is good for other women though. And you could always go for taking prog every two months instead of three. Then you don't have to feel rubbish every month?

Jx

[Frankie41]

Thanks CBA.  Yes I am already on "long cycle" progesterone therapy and am due for another round but scared stiff given my last trial was horrendous.  I had hoped to be better "balanced" on estrogen - currently I've reverted to oral (estrofem) as I've a feeling I do better on a daily dose rather than the trickle dose of a patch.  But I still seem to have some really challenging days/weeks a month, that I associate with ovulation/cycling.  Even though I am on Lucrin to suppress my cycle (and it does have a dampening effect - because I've tried without it), I still experience some breakthrough symptoms - anxiety, low mood, headache, nausea, poor cognitive function.  I've almost accepted this is the best there is until I am fully menopausal because I have tried pretty much every form of estrogen and progesterone (apart from the Mirena), and obviously not tibolone.   

[Pam Madra]

pleaseeeeeee do not take tibilone Frankie 41. If there is one thing I could say while I am in complete middle of my depression after 4 weeks of taking it is it completely wrecked me.

[warwick01]

Hi Pam

Are you still taking Tibolone?? and have you visited your consultant??

Really interested in how your feeling 

Wxx

[Tempest]

I will be starting the Tibolone shortly, and am hoping it'll be ok! 

Pam, I had a LONG discussion with my Consultant about Tibolone as I have a co-existing mood disorder so I have to be very careful. She said Tibolone is prescribed POST menopause for a reason or in ladies whose cycles are aggressively suppressed because it is not known how Tibolone will behave in the body otherwise. It clashes with your own cycle, and the results can be very unpredictable amongst other things.

If I were you, I would return immediately to your consultant and tell them that Tibolone is not for you! As I understand it, this is something of a trial that is going on with using Tibolone in perimenopausal ladies? Well - it's OBVIOUSLY not working out in your case and you are NOT their 'lab rat'. This is off label prescribing (it clearly states in the leaflet POST MENOPAUSE USE), so please don't put up with this any longer and risk wrecking your mental health!

Sending you biggest hugs!

xxxxxx