Tibolone & prostrap prescribed any advice - Endometriosis UK

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Tibolone & prostrap prescribed any advice

Joely21 profile image
21 Replies

Hello lovely ladies hope your all keeping well in this strange world we are living in, so I had an appointment booked after waiting another 3 years which then got changed to a telephone conversation I’ve never spoke to this consultant before so was nervous but he was brilliant spent over an hour on the phone listening to everything I said was sorry I was suffering etc and because I can’t have my next laparoscopy at the minute I’ve been prescribed prostrap once a month and tibolone once a day, I don’t know why but I feel really nervous has anyone been on these before, I’ve just turned 29 I’ve been put on them for 4 months only then have another appointment to see if I can have my surgery then.

Sorry to go in I just keep having major panic attacks about all this new stuff and I don’t know why

Joely x

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21 Replies
Cupcake1617 profile image
Cupcake1617

It’s great to hear the consultant was great at listening and spent time on the phone with you.

I’ve had both prescribed. I found for me, the injections didn’t help until the third one (mine were given monthly).

The tibolone, I was advised to take after the second injection - which really helped side effects.

At the time, this was the only option left for me, although I’d read horror stories online I didn’t feel like I had anything to loose. Hope they help you xx

Joely21 profile image
Joely21 in reply to Cupcake1617

Thank you so much for replying it’s so helpful like you say the horror stories are making me so nervous 😟 I said to my consultant that I have nothing to lose until I can be seen properly again thank you xx

Moon_maiden profile image
Moon_maiden

Anything new is scary, I was the same before lap as never had op. Not as bad as I thought. I’m on fourth Zoladex injection with Tibolone. I’m not sure it’s helped with pain, emotions are much better. Could be takes longer for me. No side effects that I’m aware of.

If you don’t like injections I use Emla cream it numbs the area. I put it on about an hour and half before the appointment.

Joely21 profile image
Joely21 in reply to Moon_maiden

Thank you for replying to me I’m glad it’s not as bad as you thought it’s helpful to hear things from people who have experienced it xx

Moon_maiden profile image
Moon_maiden in reply to Joely21

The idea didn’t thrill me either 😂. I’d read about it and thought over my dead body, but was getting desperate at that point so thought might as well try. One of those things that you don’t know until you do.

Let us know what you decide and if you do, how you get on.

Joely21 profile image
Joely21 in reply to Moon_maiden

Thank you lovely I’m just desperate I’ve had 5 horrendous days of pain again I’ve decided to go ahead with it all starts on Wednesday very very nervous but got to give it a go hope your ok xx

Moon_maiden profile image
Moon_maiden in reply to Joely21

Let us know how you get on. You should have seen me, I’d asked after seeing the consultant, but they needed his letter. When I went for something else the box was on her desk. Couldn’t do it without Emla, put it on and went back an hour and half later. My face would have been a picture 😂 That’s been an advantage of lockdown, surgery was empty

Joely21 profile image
Joely21 in reply to Moon_maiden

I will do oh bless you I’m sure there’s worse people out there 🤣 I’m hoping to be in and out quickly I’m so nervous now doubting myself but nothing I can do now 😬

Joely21 profile image
Joely21 in reply to Moon_maiden

Had it done this morning empty surgery so all done quickly and I’ve known the nurse for years so she was so caring, now just to hope the side effects aren’t too bad hope your ok x

Moon_maiden profile image
Moon_maiden in reply to Joely21

Helps when it’s someone nice 🙂

Hopefully no side effects.

I had a small period after the first one, nothing since.

Joely21 profile image
Joely21 in reply to Moon_maiden

Thank you for your messages they’ve been so helpful hopefully I’m the same as you think I just worked myself up a bit earlier

Joely21 profile image
Joely21 in reply to Moon_maiden

Hello hope you don’t mind me messaging so I’m 9 days after injection pains have been horrendous in my stomach but I have really bad breast pain and pain under my armpits don’t know if this is normal or not and don’t want to google anything as it automatically makes you fear the worse x

Moon_maiden profile image
Moon_maiden in reply to Joely21

Don’t mind at all, 😊, just not sure if I can help.

I’m fairly sure I had some stomach pains initially, but did have a period a week or so after, so could have been linked to that, had a bit of spotting second month but nothing since.

Would you normally get similar symptoms before a period? Would you be due shortly?

It could be linked in this way, you might not bleed though, I’m not sure everyone does. Depending how bad the pain is and continues it doesn’t do any harm to speak to GP to check, or if really bad 111. One of the GP consultation was at the out of hours, she happened to be a gynaecologist as well.

This might make you laugh, never thought I’d hear this. When the nurse did mine yesterday, she was struggling to find fat to put the injection into 🤣. (Have lost weight, not deliberately) she didn’t say that last month.

Google has plus points, but as far as looking up symptoms, way too many bad ones 😂, I think most are a bit guilty of this, can’t help it these days.

Samvee profile image
Samvee

Hi 👋 hope you're well otherwise.. Just wondering, did you experience more pain after the first injection? I had mine 2 days ago and pain seems worse I have to option to go on tibolone or kliovance in 2 months time if needed they say? Xx

Princesspeach84 profile image
Princesspeach84 in reply to Samvee

Hi I’ve had prostap and yes at first it makes your pain worse. I was told this is because it shuts down your hormones in your pituitary gland which produces estrogen and your body has a surge of estrogen at once and this makes your endo grow. So the first jab made everything worse and I was advised to take it easy and prepare for this. By about the 3rd I definitely felt improvement as the low estrogen from HRT and menopause hormones caused the endo to shrink slightly 👍 I took it for 9 months and for the first 4 without HRT and the only side effect I had was feeling fluey next day after each jab and 1st weight gain in the year. I would definitely take it again though and I’m glad I didn’t listen to the horror stories on here 😊

Hello I'm 29 and having abdominal hysterectomy in 3 weeks time. I'm also on tibilone and zoladex which is basically the same as prostap. U will be I'm. A medical menopause. Symptoms hot flushes insomnia LOTS AND LOTS OF SWEATING mood swings.... Saying that it's not the same for everyone. They were just my symptoms. Iv had fibroids in 2014 and endometriosis aswel as pcos and abnormal bleeding iv had operation s and countless medication to try fix it. I've had children so hysterectomy was my only option and guarentee cure. I did have to have some anti depressants too as they can affect your mood. Try not to be nervous the risks and the benefits the consultant would have weighed out for you and only prescribed treatment that they thought suitable. You want to know anything else feel free to message me. Xx

Joely21 profile image
Joely21 in reply to

Thank you very much for the advice and kind words I’ve decided to go ahead all starts on Wednesday so you may find me messaging you after xx

Whoisthis profile image
Whoisthis in reply to

Good luck with surgery, I really hope that gives you the relief from pain xx

As for bleeding It did not help first month, second month I had heavy bleed 2 weeks in after that completely stopped bleeding. As far as pain has not helped but like I said everyone's different. Xx

Lex4 profile image
Lex4

I know it doesn’t work for everyone, but honestly, this was my miracle cure. I had this combo for almost 2 years and had no pain. I’m only off it now as it’s kind of last-chance-saloon to try for a baby.

On tibolone... I took a slightly lighter dose (4 days out of 7) as that handled the side effects and I noticed more of the potential side effects at every day. My nurse was fine with this. Also get a calcium and vitamin d supplement from your pharmacy (I use boots - under a £ for a months worth). If you end up on prostap a little longer than planned it helps with bone density. And in that, try and do good strength focused exercise (circuits, mixed gym, kickboxing etc).

Joely21 profile image
Joely21 in reply to Lex4

I’m so pleased to hear that it helped you and I really hope you are able to have your miracle baby I too hope to one day 🤞🏻 I will keep an eye on things and see if I will be able to reduce the amount I take if possible thank you for the advice I really appreciate it sorry for the late reply I’ve had a terrible 5 days x

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