Decapeptyl injection help

[Zanlancaster]

two days ago I had the Decapeptyl injection but I feel so tired, depressed, not myself at all. I was diagnosed with endometriosis 8 years ago but just carried on and coped but the pain on my left side is so bad. The scan now only shows small endometrioma on right side and I my left side where the pain is they couldn’t find my ovary so the consultant said have this injection to switch off ovaries and if that stops the pain either carry on with injections every six months or ovaries removed in December. I’m only on day two of this injection and I’m wondering if I can even work next week?! Not sure I can cope with this v having op. Anyone had this experience or can offer advice please?

[Honeybeehappy]

Hi there. Sorry to hear you’re not feeling great. I had Prostap many years ago (after surgery for left side endometrioma) which works the same way as Decapeptyl. I didn’t take add-back hormones right away which wasn’t the best idea. I felt terrible as Prostap puts you into chemical menopause and I was a total zombie. I eventually started taking add back hormones to help - Tibilone - which was amazing. I felt myself again. I continued with the Prostap and Tibilone for 8 months until we started ivf (that’s another long story without a happy ending unfortunately. )

11 years later, I now have another big endometrioma, fibroid, and adenomyosis but periods have been better with HRT patches. I’ve now come off them and am back on Prostap and am also taking Tibilone to help with the side effects. I feel really good and for me, Tibilone works very well. The plan is possibly to remove my ovaries as I’m not sure if my gynae will keep me on Prostap long term. If I get my ovaries removed, I would like to continue with Tibilone after that. I don’t want a hysterectomy.

Have you been offered additional hormone support to help whilst you’re on Decapeptyl? If not, I’d explore this urgently with your gp/gynaecologist. You don’t need to suffer like that and the side effects can be treated. I know it’s a horrible feelingand wouldn’t welcome it gain. I’d suggest the add-back hormones make a huge difference.

Hope that helps. X

[Zanlancaster in reply to Honeybeehappy]

Thank you for replying! I did ivf too years ago x 3, no luck sorry to hear that’s ur story too. . I often wonder if that hasn’t helped where I am now. There was no mention of other hormones to have as well; I assumed I couldn’t as I can’t have oestrogen hormone. I’m waiting now to see if the ovary pain calms down to be sure it’s the ovary and not something else (I’m sure it is) and then carry on with this injection or remove ovaries and tubes - not full hysterectomy . It’s not easy going eh! I meet consultant in few weeks so I will ask about this - thank you!!!!!

[Honeybeehappy in reply to Zanlancaster]

Happy to help! It’s. It not easy at all for sure. Endometriosis is the work of the devil and for women like us, has destroyed fertility.

On the ivf front, we tried everything over 7 years from NHS, Private, overseas, donor eggs and eventually donor embryos and it wasn’t to be. Adenomyosis is the main factor for me because it will never allow implantation.

I’m 49 next month and entering my next chapter with all this and would just like to stop having annoying periods and not feel my cyst. I saw the surgeon and she was going straight to hysterectomy to deal with things, I just thought that was a bit radical and I don’t want other new problems when I’m coping ok enough right now. So it’s Prostap for now and maybe ovary removal if I choose that.

Anyhoo, defo discuss hormone help with your consultant. They should have explored this with you as part of agreeing on your treatment. I would go as far to say I like being on Tibilone and it’s making me feel ‘normal’ so see what they say and what you feel is best for you.

Have a read here: nhs.uk/medicines/hormone-re...

Also, on this forum, search tibilone and Decapeptyl to see what others’ experiences have been.

Xx

[Zanlancaster in reply to Honeybeehappy]

Thank you! Interesting - maybe that’s why my ivf failed… I had so many eggs it was crazy but nothing made it. They just kept saying chance failure; try again. I will see how the next few weeks go and if I go ahead with BSO in December and get it over with but not sure if that would still be as frustrating as this. I’m on Instagram zanlancaster or fb if u ever want to catch up.

[Honeybeehappy in reply to Zanlancaster]

I think hormone replacement is a bit of a fine tuning exercise and I’m sure you’ll find what’s right for you and if you get surgery, you’re sure to need it. Feel free to message anytime. 😁