Tibilone

[MishC]

I have been on propostap for almost 5 months and its going exceptionally well. So far i have taken nothing along side it as my side effects are limited. Recently i've started to suffer with constipation so i'm toying with the idea of taking tibilone but i'm yet to find anyone who have taken it. My gyne is desperate for me to take some form of HRT but i'm not keen on it as ive been told not to take any form of hormones by another doctor as it will have an ill effect on my health (its a long story but i spent a week in intensive care fighting for my life so i'm heeding their advice). I'm also suffering with reduced libido and hoping the Tibilone helps with that too but i'm quite wary about taking it. Considering the list of side effects that come with prostap i count myself very lucky and worry taking the tibilone will rock the boat and cause side effects which i would like to avoid.

I realise everyone is different it it effects everyone differently but has anyone on here taken this or are you currently taking it? If so how do you find it?

I'm 37 and gyne plan for me to be on prostap indefinably

[pink-elephant]

Hi, I'm on Zoladex and tibolone. I was told to take the Tibolone straight away so I've just had my second Zoladex implant and had no real side effects at all which is great! I'm 34 and on the Zoladex just until I get my hysterectomy and then i'll have to stay on some form of HRT for the next however many years, but so far so good!

[Lindle]

Why is your gynae planning on keeping you on prostap indefinitely? This would be against guidelines as it is only licensed for 6 months and is in any event not a long term treatment for endo. It would be like taking your ovaries out which is not a long term treatment as endo, especially when well progressed, doesn't need ovarian oestrogen. It grows regardless. If you do this then you must give your written consent that you understand that any long term effects are unknown and accept the risks.

[MishC in reply to Lindle]

Like many ladies in here I suffer with exceptionally heavy periods but unlike anyone else I’m allergic to iron treatment. I have had significant iron deficiency anemia since 2018. I have had 2 standard iron infusions which both put me in hospital with major heart problems. The cardiac events I suffer will eventually kill me. I have been having reduced iron infusions (50mls over 2 hours rather than 1000ml in 20 minutes) with the anaphylactic protocol (IV steroids and IV antihistamines) and I still suffer with allergic reaction but not as severe. The more mini iron infusions I’ve had the worse I’m getting and I’m told that eventually I will go into full anaphylactic shock with them. I was very wary about starting prostap due to the side effects it can have but in comparison to the iron infusions and severe anemia it’s an absolute dream for me. I’m still iron deficient but my hemoglobin is actually in range (only just - by 0.1) and I feel amazing for it. Apparently it’s unlikely I’ll ever not be iron deficient as my body doesn’t seem to absorb it properly but it is what it is.