I saw my gyno on Wednesday and from my perspective it wasn’t a good meeting.
I have been on decapeptyl for ten weeks and not had a brilliant time, though not horrific either. Basically had a horrid flare up a few weeks in, and then had a light bleed with spotting either side a month later. This bleeding then caused more pain and the result has been that I have felt sore for another two weeks.
Alongside that, I’ve had joint aches, particularly in my neck and fingers, brain fog, fatigue. Nothing horrendous but I have a demanding job and these things mean that im not doing my best at work.
He has suggested switching to prostap. Anyone know why? I can’t imagine it would make much difference? Surely the side effects will be the same?
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Kangalou
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Dear Kangalou, sorry to hear that your treatment has not been working out too well. While Decapeptyl and Prostap are slightly different formulations and, as every woman is unique some find they prefer one formulation to another, but they are both GnRH Analogues / Agonists and can potentially induce similar side effects. Have you looked up the Summary of Product Charactaristics for both drugs on the website Medicines.org.uk? The manufacturers of both drugs provide detailed guidance there - both patient leaflets and the more detailed SmPC advice.
Has your specialist discussed the possibility of adding in a dose of HRT in tandem with your Decapeptyl / Prostap treatment. Both drugs suppress Endometriosis by suppressing your body’s oestrogen production. All of the side effects you have listed suffering from (including the brain fog etc.) are caused by hypoestrogemism (too severe an oestrogen deficiency), and many specialists “add back” a bit of oestrogen using HRT to try to lessen such side effects. Again, every individual is unique and some find HRT doesn’t greatly improve things, other women do but find it takes a bit of experimentation to find an HRT formulation and dose that suits them. It’s all a bit trial and error (like most Endo treatments).
Anyway, apologies that this was such a log reply, but I hope it is helpful. x X x
It is definitely worth trying a few different HRT preparations and doses as there is no one size fits all. Some brands have quite different oestrogen/progesterone balances and I found the progesterone rich ones really did not suit me, but the oestrogen rich ones did.
There is also “bioidentical HRT” which is closer to your body’s own hormone formulation than old-school synthetic HRT. It used to be hard to get on the NHS, but many specialists do now prescribe it as it supposedly has a better absorption rate and fewer side effects. I certainly found it more helpful although, ultimately, I ended up ceasing GnRH treatment (primarily because of the impact even the reduced brain fog was still having upon my ability to work).
But some women do find that they are able to strike a balance between treatment side effects and Endo symptoms suppression with the help of the right HRT dose. The key is to make sure your Specialist supports you both in finding that balance and continuing to monitor that it remains effective over the longer term. It is after all their job not only to prescribe an Endo treatment, but also to help support you through it to make sure you get the best therapeutic results following their advice and undergoing it.
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