Decapeptyl concerns

[BikeRiderGirl]

Hi all. Would welcome and shared experiences about decapeptyl v mini pill! And also I think I just need to write this down for folks who I know will get it!!! I have endo and adeno. Excision removed the endo but unfortunately the adeno is still causing pain. I have a coil which has stopped my periods but not the pain. I saw a (non bgse) gynae today who was very quick to say I should go on decapeptyl (plus estrogen back up). I questioned her quite a bit as really don't feel comfortable with the potential side effects and the 'all in' aspect of an injection as opposed to pills which you can stop of the side effects are too bad. Plus have read some research that when you stop decapeptyl it can prompt regrowth of the endo (and I have that under control at the mo fingers crossed!) I understand some folk go on it to tide them over til a hysterectomy but am hoping to avoid that and see if i can ride this out til menopause comes naturally (I'm 42) anyway, after asking again what the alternatives were she finally she offered the option of the mini pill and basically left it to me to chose (which actually I appreciate!). My previous consultant in London who was bgse registered had suggested the mini pill as the next option when we discussed what would happen if the coil didn't do the trick. My gut is to go with the pill, just wondered what others experiences had been...

[BikeRiderGirl]

Ah, I've just read some of the other recent threads re decapeptyl which are so helpful. Soz for being repetitive!

[claudia_91 Moderator Endometriosis UK in reply to BikeRiderGirl]

Hi BikeRiderGirl

Thanks for your post 😊 It's fine to be talking about decapeptyl again. I hope you found some helpful insights in the other threads.

If not, Endometriosis UK have a Treatment Info Pack with details on all the treatments available to us and this includes decapeptyl. If you'd like to have a read the link is here: endometriosis-uk.org/sites/...

Hope you find what works best for you 😊

Take care,

Claudia

[Pureunicorn]

Hi BikeRiderGirl, I tried the mini pill years ago but I just spotted and had a periods every 2 wks 🙄 the pains didnt stop either and after trying other things my consultant said about the decapeptyl which I had monthly, it was great stopped my periods and most of the pains, after being on it for over 2yrs it started to not be as effective but still better then not to have it, I'm now 9 days post hysterectomy and already feeling so much better then I did before, I know it's not the same for everyone but if ur willing to give it a try then I would yes go for it, just remember to take HRT and calcium supplements, I was also advised to take omega fish oils and vitamin D, good luck with whatever you decide xx

[Billyfluffy]

Hi there I’m 46 and had my hysterectomy at the age of 32 not a full one but after another year at 33 had the ovaries taken out. I had stage 4 Endo and they put me in Premarin 0.625 . I have not looked back since . The hot sweats the pains in my head and the weight gain eventually gone .

Luckily I had my twins Who are now 15 so a hysterectomy was my best option . Hope this helps . I wish you all the very best .

Best wishes

Billy fluff