Endometriosis UK

Zoladex / Prostap - worth it?

I've had a rotten week with two trips to hospital and one of the worst internals ever, so painful as the doctor felt new scarring and I've been flared since.

Anyway the long and short of it is my

Surgery should be in march (should have been this month but NHS cancellations have severely impacted my local trust) and so the doctor recommended I try the injections.

I have concerns about these but also a lot of questions, the first being is there a difference between prostap and zoladex or is that a brand name?

Secondly, side effects - how bad are they as they read like a nightmare! My main concern would be fatigue, weight gain/skin and hair issues (vain but I already have confidence issues from my endo belly, becoming a crepe skinned bearded lady really will tip me over the edge, and impact on mental health/anxiety as I've previously suffered with clinical depression and anxiety which I now have controlled and don't need medication for, I'm really worried the crazy hormonal changes will set me back and I honestly don't know how I'd cope if I slid back into depression.

I got offered the injections in September when they first saw my endometrioma and scarring in cervix (not had a lap yet just one of those who has the symptoms which make it unlikely that it'll be anything other than endo) but at that point I was told surgery would be January and so I felt I could manage the pain. Four months on my pain and mainly discomfort when sitting and lying is really starting to impact my day to day life but I don't know if this is still better than the side effects of the injections.

Sorry, long post but before I make a final decision I'd really like to hear experiences of others, good and bad, so that I can make a more informed decision (I know everyone reacts differently but it still helps knowing possibilities good or bad).

Thanks xx

13 Replies
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hi, I had these injections last year... worst thing I have ever done.. it triggered depression and anxiety , i was in psychiatric hospital for a while. The hospital who gave me the injections are useless... If I was you I would not have them... Honestly not worth it

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They are not worth it. I was suicidal with decapeptyl and now depression that's I've never had before..

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wish id never had them

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Dear Rajsam, I wish I never had them too. Hope you get better. These injections ruin people's lives. Imagine having depression as a side effect. Terrible..

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they ruined my life, and i was not told by the doctor about the side effects...

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I am on Pro-stap (leuprorelin). I was on it for 6 months at the beginning of last year (taken with tibilone to counteract side affects) it was the best year of life I’ve had in years. It took 5 months for the pain to come back at the end of the 6 months which gave me a pain free year. It did take around 5 weeks to start working and for the pain to subside. The pain came back with a renewed force in November - saw my consultant just before Christmas I thought I would be going down the hysterectomy road as I’m 46 and won’t be having any more children. He said I could have prostap again first injection was on 19 Dec - I am waiting for it to work - pain is horrendous but I am hopeful it will start to work as it did before. On the downside of taking it I did gain 2 stones in weight last time but have lost that again through being in immense pain for a few months - I would gladly take those 2 stones back as a trade for the pain any day!!! The weight gain wasn’t purely down to the prostap it did increase my appetite but I could have made better food choices. When prostap starts to work it’s like a new lease of life and any fatigue, and negativity it saddled me with soon disappeared.

Good luck

Joanne

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Worst thing i ever did having those injections, in themselves they are painful, the side effects horrible. I was moody up and down and i meam happy 1 minutes screaming or crying the next for no reason. My poor hubby got the brunt of it.

The whole 3month where the worst i ever had. I'd like to say i wont have them again but its part of the long protocol for ivf so i had a single one in oct and had basically the same crap all over again.

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There are other options for ivf down-regulation, none are great but just thought I would mention it in case you have another round of ivf and want to ask your clinic for something different x

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Thank you, i think the clinic mentioned a nasal spray, that sounds more bearable x

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Im left with severe anxiety after those injections

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I was started on diazepam for severe anxiety that I never had before as a result of decapeptyl injection

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yep, same here.. is your anxiety still a problem?

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Hi, I had my first Postrap injection last month and have my second next week I was running out of things to try as the pain was so bad so I hope this will work I don’t think I have been on it long enough yet so haven’t really had any side effects yet :) Xx

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