Hi.
I’m hoping for some advice. I have an appointment next week to discuss starting on Prostap or Zolodex. I’ve been told I’d have to start HRT alongside it and I’m wondering what experiences people have have with this treatment. I can’t seem to make up my mind and the stress of worrying about it all is driving me mad.
been on zoladex for 7 years. Best decision of my life. Was amazing. I also would work with your gp to get the right hrt, it’s not one size fits all so you can change and find what’s right for you.
That’s really good to hear. I’ve been told that it can’t be taken for over 2 years,which is one of the reasons I’m struggling to decide what to do because if it works I don’t want to go back to living in horrific pain after 2 years!
I basically went to my gyno and said how amazing it was and so he put my on it indefinitely. I have bones scans but you can take it long term for sure
That’s amazing. I’ll definitely ask if that’s an option. It always seems that different hospitals and areas have different rules for these things.
Yeah it’s weird isn’t it. I am actually having a hysterectomy tomorrow though but they said if that doesn’t work (if the miss getting some endo out) then I can go back on Zoladex for the rest of my life essentially as my pain went from a 10 to a 2 and now most days I don’t even notice any pain!
So that’s a positive thing to note if it does work but you end up going down that route.
I am on my third course of zoladex with add back HRT and every time it's been amazing, no pain and my mood has dramatically improved. It's definitely worth a try in my opinion!
That’s really nice to hear. Glad it’s working for you ☺️
Thank you, I know it's different for everyone, especially someone else who has posted below. If it makes any difference I was 37 when I had my first course, and am now 42 and perimenopausal 😊
Hi I'm on prostrap and I'm not taking any hrt not needed it. I do take vitamin d as it was advised by gynecology. Its been brilliant for me. Feel free to ask anything x
That’s really nice to hear. I’m glad it’s working for you. Were you given the option of HRT?Can I ask how old you are?
Hi of course I'm 50, and i was offered hrt to but never took it x
Hello
I’ve had zoladex treatment and prostap. I also had the hrt. I had tablets when I had the first two courses of zoladex no then I had patches on the last course and on the prostap. I had a total hysterectomy in October an ld I am in patches for the next 5 years. Rarely get a hot flush so seem to work fine in that way. All we can ever do is try these things and see if they work/help. Good luck
That’s really nice to hear. Can I ask how long you were on the treatment before having the hysterectomy and how old you are?
Hello
I had 3 courses of zoladex over 20 years of attending gynaecology, many surgeries, many miscarriages and an ectopic pregnancy. I had extensive endometriosis removed many times. The last stint started 2 years ago. The Zoladex stopped working so they changed it to prostap. Didn’t have any affect on me, after 7 months of constant bleeding they did a hysterectomy. My surgery went wrong and I had a medical emergency, my bowel was stuck to my womb and they cut it to do the hysterectomy so I needed emergency bowel surgery and a colostomy procedure to save my life. They called my husband during surgery twice to say I might not pull through. 7 months later I’m on the mend, awaiting reversal surgery and preparing for my big 50th birthday next week! It can be traumatic but I’m here, I’m fighting back and us girls can whip this things butt into shape 😊 best of luck
I feel really bad chiming in with a negative experience after 3 super success stories, but I feel it gives a more balanced picture for you to make an informed decision. From my experience, things weren’t so rosy! From day 1 of injection 1, I’ve never felt so ill and I suffer very badly with severe stage IV endo and adenomyosis! Joint pain became horrific, tendon pain in ankles and wrists felt like they were going to snap, a heavy flu feeling where I could barely get out of bed or off the sofa, severe fatigue, very very depressed state of mind (by month 3, I felt suicidal) and extreme headaches and fatigue where even the simplest of activity absolutely exhausted me. Looking back, I barely have any clear recollection of what happened over those 3 months which I find very unnnerving.
Like you, I weighed up the pros and cons and knew it was the last treatment I hadn’t tried to help my situation. I regret it massively. I’d just be getting very slightly better just before the next injection which then knocked me back down again. By month 3, without being overdramatic, I knew I was at a strong risk of doing something really really stupid and I stopped them, with the total support of my consultant who was especially concerned by my reaction. Of important note is that I have had known underlying progesterone intolerance issues in the past which may have caused these severe side effects but that’s guess work from my part. During a lot of IVF I reacted to different forms of progesterone I took, so suspect that has had some bearing on my bad experience.
It changed my cognitive function, my mood, my outlook, the side effects were as distressing, if not more, than my endo pain and that’s saying something. The frightening thing was that it has taken over a year for the injections to wear off and my periods return to normal, (despite doctor saying it’ll take a month to work out your system after stopping) I only feel fully back to normal now and my last injection was in March 2023 - 1 year 2 months ago.
I took Prostap with Oestrogel and Utrogestan HRT, I was 49 at that stage and had known severe endo and adenomyosis for background.
I don’t want to be the grim reaper raining on the parade of others’ great experiences, but if you search in this forum for Prostap and Zoladex experiences, it won’t be all rosy I can assure you!!
It’s very evident it works for some, while some consider it an absolute poison and fully regret taking it. Sadly, you only know if you’ll be a lucky one by trying it I guess. Biggest mistake I made though and getting back to my normal excruciating period pain/flares during ovulation and chronic fatigue is still preferable to what it felt like being on those injections. I was a shadow of my former self and it terrified me as I can safely say it severely affected my mind but I feel totally ‘me’ again now!
It would be interesting when people feedback as to know what age they are and whether perhaps that made any difference to the outcome. I naively thought when I was 49 (& no doubt peri menopausal) being put into a chemical menopause would have not been too much of a shock to my system as maybe someone at 25-30, but I think there’s a lot lot more other factors at play with this treatment as some people can have very very severe reactions as in my case. I’m not alone either.
Good luck with whatever you decide to choose. I’ve been there too worrying about what the best thing is to do, what I would say is don’t do what I did and try it - see an extreme reaction - and think you have to just ‘give it more time’ - keep a note of symptoms and discuss with your doctor if you go ahead and notice a severe decline. I stupidly thought I’d be told off for not giving it proper chance to work but the consultant said had he known what I was going through, he’d have recommended I stopped immediately. So don’t be hard on yourself, try it as that’s the best viable option left for you, but don’t be afraid to stop it if it doesn’t suit!!
All the very best and I hope whatever you decide helps you x
oh thank you! I hope I haven’t confused you being negative, but I feel you need to see all sides and I do know of others who’ve had some truly awful experiences like myself. It seems doctors seem reticent to give the full picture and see my case and others as mere anomalies which they aren’t. It seems you get a quick mention in passing of ‘potential side effects’ and they seem to genuinely think this is a suitable treatment for all which it certainly isn’t. As we well know, one size does not fit all when it comes to endo treatment!! You’re doing exactly the right thing by canvassing opinion and making an informed choice, that’s all you can do so I wish you the very best with it and if you do try, hope it works well for you, but don’t feel browbeaten into feeling you have to if you don’t feel it’s for you. Good luck x
I've been on Prostap for 7 years and on it until I'm 50. I can give you views from both sides as it was the only option available to me as I'm unable to have any invasive surgery due to major surgeries in the past. At first I was apprehensive due to my lack of knowledge on the drug, but having trust in my Consultant I took his advice and started on 12 weekly injections at 40 years old and it helped with reducing the pain but after 2 years it was wearing off in week 11, so I was put on 10 weekly injections from then on. I am on HRT which helps with certain side-effects.
Now at 47 my views are changing. I now have osteoarthritis in both my hips, suffer with terrible joint pain, it has given me high blood pressure and worst of all a breakdown in January due to my teeth snapping off. I've lost 4 teeth 7 months.
I have now got my dentist, doctor and maxillo-facial consultant involved and awaiting a CT scan to check the stability of my jaw as I will have to have implants later on.
I hope this helps, obviously every drug effects people differently and I hope you make the right choice for yourself. All the best for the future x
Hello everyone, currently on prostap injection and it has been an horrible experience so far. I took my first injection on the 12th of April and also given tibolone medication to counter the side effects but my experience has been horrific. I feel sick everyday, like I have a fever, hot and cold at the same time, feel nauseous, I'm extremely exhausted, sometimes I can't even get out of bed to take a shower. I have lost appetite, I still have cramps everyday even though I am permanently on mefenamic acid to help with the pain. I am due for my second injection on the 17th of May (in 2days time) and I just pray the symptoms get better and subside, because it has been really tough being on prostap injection. I hope everyone else jas a better experience than me.
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