Decapeptyl making things worse, any similar experiences

[Illy-lory]

Hi ladies,

Arrrgghh, just feel I had enough.

Had my first injection 2 weeks ago, after 7 weeks of CONSTANT lower right side pain, from endometriosis and burst cyst.

The injection initially stopped my period, but now, 2 weeks later, I'm literally bleeding more heavily than ever before!

I'm moody, anxious, the lower abdomen pain is back (it eased a little for a couple of days after the injection) , got joint pain, hot flushes and bleeding like crazy..

Rang and emailed my consultant's secretary, no answer as per usual 😡😡

Please tell me, from your experiences, will this get better, or worse? I'm due to have another shot in 2 weeks, and really unsure about it now😔😪

[NoEndoInSight]

Hello Llly-lory

Really sorry to hear you are feeling so grotty. Decapeptyl is a "GnRH Analogue/Agonist". This class of drugs works on your “Pituitary/Hypothalamus/Gonadal Axis” to stop your body producing the leutinizing hormone which usually triggers your body's production of oestrogen / progesterone. This in turn suppresses your monthly cycle and (hopefully) your endometriosis symptoms. However, when you first start treatment you can experience what they call a “flare effect” in your endometriosis symptoms for a few weeks while your body adapts.

I’m sorry you weren’t warned in advance about the possibility of a flare in symptoms when you first started Decapeptyl treatment as it can be really unnerving if you are not expecting it. Keep trying to get hold of your specialist to advise them of what you are experiencing. Also let your GPs know too so they can monitor whether things are settling down over the coming days.

In the meantime you can look up the Patient Advice Leaflet and the slightly more detailed Summary of Product Characteristics (SmPC) for Decapeptyl on a website called Medicines.org. Just click on whichever Decapeptyl formulation you are being prescribed on the link below:

medicines.org.uk/emc/search...

Hope the flare passes quickly and things improve soon, x X x

[Escapologygirl]

I had 2 injections and each time I reacted worse than ever and the consultant refused to believe me and said I wasn't following the instructions so I stopped them and just existing now. Have no faith in medical world. I hope you have better luck with it