Looking for good experiences on prostap - Endometriosis UK

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Looking for good experiences on prostap

Jademillhouse profile image
15 Replies

Hi everyone,

I have my first prostap injection on Monday and I'm starting to get very nervous about side effects. I don't want to just be trading current symptoms for new ones and I have also struggled in the past with really bad anxiety and depression and I'm worried about this setting it off again.

I have had a look through the posts on here but I can only seem to see people who have had a really bad time on prostap. Can anyone who's had a good experience with the injections or found that it's helped them please give me some reassurance/advice etc

I should add that I don't want to hear bad experiences cause I've read enough haha I also don't want advice on whether to get the injection or not as this has been decided by me and my doctor and I don't need anymore input. Thanks :)

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Jademillhouse
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15 Replies
Saffie123 profile image
Saffie123

I’m in same boat, but for Zoladex. It’s really hard to trust and go with treatment plan when all you hear is the bad stuff. Surely the experts wouldn’t be recommending it if it wasn’t necessary. Heading about good experiences and tips for coping with the ‘alternative’ inconveniences of endometriosis would be great!

Jademillhouse profile image
Jademillhouse in reply toSaffie123

Yes that's what I keep reminding myself. I hope it helps you 💕

anonymousunicorn profile image
anonymousunicorn in reply toSaffie123

Hey Saffie. I was in the same position 5 weeks ago with Zoladex. Had to just trust the process and go with it. I can honestly say 4 weeks after first injection it took a while to settle and I am still bleeding a little, but very minimal pain and the experience has been no where near the horror stories I read online before hand. Hope your experience is good too x

Saffie123 profile image
Saffie123 in reply toanonymousunicorn

Thank you for this! I guess we just have to be prepared for it possibly being worse before getting better!

Jen_dog profile image
Jen_dog

I had prostap and was the happiest and “wellest” I had ever been once it kicked in. The first few weeks were a bit rough, and I had a really bad period, but then things got progressively better. I had hrt too and had really mild symptoms (flushes etc) but they were manageable using things like cold sprays and having small lightweight PJs/bed sheets - which was a novelty for me as I’m usually a fully head-to-toe in fleece and quilt at night 😂

Jademillhouse profile image
Jademillhouse in reply toJen_dog

Ah I'm glad it helped you! Yes I am expecting some side effects and feeling a bit rubbish at first as you would with any medication but I'm hopeful it will offer some relief 🤞🏻 I am starting hrt at the same time so that should help too. Thanks for your reply :)

LCP2018 profile image
LCP2018 in reply toJademillhouse

Reading the above, with HRT it's probably okay, I have it for breast cancer and it's entirely different as i can't obviously have HRT.

Lucinka17 profile image
Lucinka17

hi Jade,

I had laparoscopy 4/7 and was put on Prostap straight away plus HRT. I have been worn the 2-3 weeks can be tough as first all the hormones gets mixed before it starts suppressing your ovaries and it was exactly like that! But when they said bad I was expecting my very bad days I used to had but not at all it was manageable with pain relief.

Prostap made Definitely change in my life at the moment and I am trying to stay possitive it will carry on to bring some more normality to my life.

I haven’t had any hot flushes but insomnia is big problem but again 🤷🏼‍♀️one of the side effects so we have to deal with it.

Jade can I ask you why have you been put on it?

All the best🫶🏻

Msg me anytime👌🏻

Lucie

hi, I was on Prostap on and off for about 2.5 years! The first couple of weeks were a bit rough with huge mood swings, heart palpitations and night sweats but once I started the hrt (tibilone) that all calmed down. I had no periods, no pain and was able to have a ‘normal’ life whilst I was on it. Definitely the best treatment that worked for me prior to hysterectomy. Good luck! Hope it works as well for you x

Starry1977 profile image
Starry1977

No experience but I started working with a new boss this week who has gynea issues and we got talking about endo treatment . She asked if I'd had the injection into the stomach, and said it was the best thing s he did. I think she was meaning the menopause injection.

Gemmsh profile image
Gemmsh

I have just stopped Prostap and Tibilone (HRT), after being on it for around 7 years. Reason for coming off, is I've just had a hysterectomy.

Same as everyone else being worried about the side effects, but you have to weigh up your life over a thing in the future you can't control. My endo was crippling and prostap, although tough, was the best thing I did. My biggest suggestion to you though, is to ensure you get on HRT and try a few if they don't work for you. I am being mindful not to write any negative side effects, but in the main the good outweighed the bad.

Go with the advice and I hope you get the relief, I and others have had x

Tilly456 profile image
Tilly456

just been on zoladex for 3.5 years and have op booked for next week. This was the best thing I have ever done. My quality of life improved so much. I was lucky that I had no bad side effects and was able to be me again. I too had read so many horror stories but my consultant assured me was worth the try and I’m so glad I did. I would honestly recommend trying. Hope bes the same for you

Keepondreaming profile image
Keepondreaming

Hi Jade

I had Prostap SR starting in May. Initially for about 2-3 weeks I had minimal symptoms. I still got a period in May. I had a further dose in June and I got no period in June. However from late May I was really dizzy with the Prostap. I honestly think everyone reacts different but every day was different. I found approx two weeks after having it the side effects took hold more.

I hope you are ok with them and everything works out for you.

LCP2018 profile image
LCP2018 in reply toKeepondreaming

Good to know! 'Keepondreaming' as I was incredibly worried about the constant dizziness I have and no one believed it was the prostap. Once you've had cancer a couple of times, that's all anyone thinks, including me.

F1Lucy profile image
F1Lucy

Try not to worry too much! I know you see a lot of bad stuff but it's not been like that for me at all. I've been on Zoladex 5 months now and it's been amazing. I've put on a little weight but haven't had any other symptoms/side effects at all.

It's really reduced my pain and I feel so much better in myself. I was getting a bit down with all the pain and waiting for my op, but now I'm not in as much pain I'm feeling a lot more positive about everything.

Everyone will have a different experience, but I hope it works out for you!

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