I have been on prostap 3 since October 2020, with add-back HRT, Tibolone, since January 2021, almost 8 months. I'm due to have the next prostap 3 injection next month.
I'm on the waiting list for an "urgent" (been waiting almost 9 months); hysterectomy, cyst and ovary removal, with bowel involvement. I'm not sure whether to continue on prostap 3, as it seems to be less effective than it was. I found it more beneficial without HRT but I understand the long term effects of not taking HRT and risk of osteoporosis.
Currently I have not been given a date for surgery.
I know I can't continue on prostap indefinitely but also dreading coming off it as it does give me some relief 🤔
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I asked my consultant regarding this as I had heard that you can only have it for six months.
She said that if you’re on it longer then you just have to make sure to keep with the HRT and have bone density checks but as long as all is well on it then she was happy to leave me on it for a few years. I came off recently as it wasn’t working for me any more but if it weren’t for that I would have stayed on the treatment
Yeah I had also heard it was 6 months. I was worried that I was being left on it due to the delays. It's good to hear you can be on it longer with HRT and bone scans. How long were you on it? Were you offered a bone scan? Sorry to hear that it hasn't been working for you anymore. How have you found coming off it?
Hope you don't mind all the questions. I'm just trying to work our whether to continue on it 🤔
Hi, at first I read that it was 6 months, as I came to my 6 months and getting anxious I attended a webinar with a bsge specialist and I asked that question. Was told that although it’s not ideal, with add back hrt you can be on it for longer. I was on it for 9 months when I got my op date. I also found that the three month injection didn’t seem to last as long- I was better on the single monthly injections. Good luck and keep ringing the booking clerk to get a date for your op! Xx
Thank you for your reply, I am getting anxious as I will have been on it 9 months next month. It's good to know that with HRT it can be continued, although not ideal. That's interesting that the monthly injections were more effective than the 3 monthly. I get a lot of Palpitations and pain and fatigue are definitely increasing.
I regularly chase up with the waiting list manager, the last time I called the list was being reassessed by an MDT based on clinical need. Hopefully I'll hear something soon 🤞
What surgery were you waiting for? I hope it went well xx
I had stage 4 die endo. I’m with a bsge centre and my consultant is brilliant. He saved my kidney, appendix and bowel (they really thought I’d have to have a stoma) excised from pod and few other areas too. My left ovary and tube couldn’t be saved as was too far gone. I rang booking clerk and the secretaries of both surgeons a few times a week. I had it cancelled twice and a nurse told me to ring and make nuisance of yourself so that as soon as a spot comes up- they’ll book you in to get rid of you. So I did… I rang and rang and spoke to multiple people. Get your gp to help- they can contact secretary/clerks to say that your anxiety levels etc. Good luck, don’t give up, keep fighting for your life. I know it’s hard, but we deserve to have a life. Xx
Glad your consultant is good, and managed to save you from kidney, appendix and stoma complications. Sorry to hear you lost one ovary and tube. I also have stage 4 DIE. My womb and ovary are tethered to my sigmoid colon on my left side (might need a stoma). Also have an endometrioma and adenomyosis. My consultant isn't sure if my ureter is involved and my worry is that it could he getting worse while waiting.
Good for you for fighting for yourself, so glad you were successful in your fight. I will keep chasing them up and hopefully will get a date soon.
Hope you don't mind me asking;
When did you have your surgery? Have you noticed an improvement in your symptoms? xx
Not at all, it was in April so am still recovering. It’s not been easy, but I’m getting there. I too had my urethra covered in endo, my consultant told me it was like trying to peel apart something that had been stuck with ‘no nails’- he put in a stent which I only had taken out 10 days ago.
Where are you based? Are you with a bsge centre? If not you should be- then you’ll have a team of specialists for each area where there’s endo.
Two years ago I was just under a gynae who ‘had an interest in endo’ big difference to an actual specialist.
Glad you are getting there with your recovery and you've had the stent out now. I am under a BSGE centre. The waiting list manager says that's why there's such a long delay, due to needing 3 surgeon's for my surgery (gynae, colorectal and urology). How long did you wait for surgery?
Wishing you a smooth recovery and thank you for sharing your experience xx
Hallo, I was given permission by my bsge consultant to stay on Zoladex indefinitely - I’ve been on it since 2013. I have regular dexa scans and take Tibolone, and actually feel like a normal person (most of the time!).
We had very extensive conversations about it, taking into consideration my age, fertility, pain issues and general health. X
Thank you for replying. Knowing that you can be on prostap/zoladex for this long and with regular monitoring is helping to put my mind at rest. So glad that you feel like a "normal" person most of the time. It's good to know that you and your consultant have been able to make informed choices about having it long term.
Do you suffer with any side effects from zoladex? xx
Initially, I had tingly hands and hot flushes. Now it’s just the occasional hot flush for me - that’s it!A known side effect to be aware of is a change in your mood - if you feel extremely emotional, then it’s worth raising that with your GP/consultant. But as you’ve been on Prostap for 8 months, I think you would have experienced that by now.
The occasional hot flush is not too bad. Glad it's really suiting you.Thanks for the information regarding mood. I will keep an eye on that. So far I've felt quite emotionally stable but do get anxious and frustrated about the wait xx
Hi! I asked this question to my consultant as I had heard conflicting advice. Zoladex/Prostap is only licensed for 6 months for Endo, but with regular monitoring and bone density scans around the 2 year mark - it can continue indefinitely if it is beneficial. Hope this helps!
Thank you for replying, it definitely helps to know that I can stay on prostap for longer than the initial 6 months. I think because I knew it was only licenced for 6 months, I was worried I was being kept on it due to the delays and it would be detrimental xx
No problem! Don’t get me wrong, I still have the same concerns - I’m also worried that further down the line it will affect me as I’m only 27. But for now, if it helps with the pain (which hasn’t yet happened) then I will continue with it. Xx
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