anyone had prostap without Tibolone?

[Batwoman3]

Hi I’m nearly 5 months in on the 3monthly prostap ( for fibroid shrinkage and pre hysterectomy) .. I didn’t take the Tibolone due to my fears for the first 3 months , but tried it on a half dose for about a month when I started the second 3month injection . Then I hated the side effects and they made me more anxious so I stopped the Tibolone and just got some calcium vit d, menopause supplements and collagen supplements . Anyone else doing Prostap without the Tibolone? I’m just scared for my bones but the Tibolone wasn’t doing my mental health any good and I got some wierd bleeds and breast weirdness which has all gone since stopping it . Can’t get in touch with the consultant to ask where I am on the list for surgery . He said I’d only need to be in this for 6minths but I think they’ll be pushing it to longer -as no news yet and no contact except nurse follow ups Xx just want to know if it’s ok to be on it without the HRT for a short while Xx

[Ange789]

Hi I've just finished 6 months of prostap I did try tibolone but only managed three weeks as it made me feel anxious and depressed I got stomach pains . Seeing the consultant tomorrow. I think they will push it longer but I don't think I can !

[Batwoman3 in reply to Ange789]

I feel for you Ange! 😔Honestly I don’t know what to do anymore . I can’t even get in touch with the gynaecology dept to ask advice . Their phone just cuts out . I’ve emailed PALS . I hope they come up with a solution for you and something that works better for you!

[Ange789 in reply to Batwoman3]

I will let you know what the suggestion is !! Xx

[Batwoman3 in reply to Ange789]

thankyou!! And if I manage to get in contact with my consultant/nurses I will do the same xx fingers crossed for you!

[Ange789 in reply to Batwoman3]

Hi unfortunately I didn't see the consultant saw a registrar who put me on the hysterectomy list. He didn't feel me with confidence as said in a percentage of women the pain comes back especially if going to take hrt. No idea who the surgeon would be..feeling a bit flat!!!x

[Batwoman3 in reply to Ange789]

aw sweetie I’m not surprised you are feeling flat . I bet they didn’t give you an expected date for surgery either? I’m still waiting to hear about mine . They just leave us in limbo. So did they say to stay on the Prostap while you wait for op etc or can you come off that .. or are they making you go back on Tibolone ? I just feel like we are no further forward when we get ‘on the list’ for surgery as there’s then more mystery and you should at least be able to get in touch with the new consultant as you are likely to have questions 😔 I hope you get somewhere with it all soon. X Maybe natural remedies rather than HRT are better if not for physical but at least for our mental health 😟💕

[Ange789]

Hi I can't remember if I replied to this sorry!

[Batwoman3 in reply to Ange789]

Hiya Ange .. just a quick update on more NHS vagueness .. I managed to get through via PALS to the gynae email and by going via PALS they actually replied , but the current situation is they can’t give any surgery dates for ‘various reasons’ which is really vague and I’ve asked for at least a consultation about interim treatment going forward and explained my feelings about the Prostap/Tibolone not really bring a good idea if they can’t tell me how long I’d be having to stay on it. I think I’ll be going back to my previous situation before long back to square one . It’s a joke x

[Ange789]

Oh my goodness it definitely is a joke. I didn't get a date or any further advice just if pains start again have another prostap (3 weeks now and just starting to get signs of it back ). I really don't know what to do for the best it's so frustrating isn't it. Prostap stopped all the pain but such awful side effects. The only thing I think is to save up and go private!

[Batwoman3 in reply to Ange789]

funny you should say that . My mum was saying the same that she would use her few savings for me but the thought of that amount of money makes me feel a bit sick . But yep it is probs the only option to get things sorted quicker. It goes against my principles but the NHS is up the creek , it’s like even the people who work there have no clue what’s happening with the waiting lists . My dentist said the same .. him and his nurse just rolled their eyes when I mentioned mystery waiting lists and said they are in the same boat . Argh! X

[ScouserA]

Hi ladies I'm going through same thing at present I was just looking on an update to see how things have been for you both. I had my first prostap injection yesterday and that tibolone tab I took with it made me feel awful 😖 scared to take it today x