Help and Advise Anxious!

[Kazza2311]

Gonapeptyl Injection has anyone had these can you advise I start Friday

[Kmlittle]

Hello Sorry I haven't heard of that injection but I'm on decapeptyl injections. And I've been on them for over 9 months now. They have help reduce my pain but I get them every 3 months and after first injection it took 3 weeks to feel any help with pain. And side effects r not the best hot flushes and night sweats. I find mine almost wear off about 3 weeks before I'm due next one. This is different with everyone tho. If u don't mind me asking why r u going on them what stage of treatment and where is ur endo? I'm still awaiting a diagnosis but recent mri which was incinclusive but showed possible endo on my bladder.

X

[Kazza2311 in reply to Kmlittle]

Hello I was diagnosed yesterday with endometriosis and Anedomysis plus polycistic ovary, polips, tilted womb! It's great being a women! Endo is all over my womb constant pain in stomach (niggling ache, pains in bum cheeks and down my legs feel generally unwell have a phobia of needles so dreading it needle goes into the muscle if my bum a X the consultant is putting me straight on HRT xx hope you get sorted

[Kmlittle in reply to Kazza2311]

Yeah I'm on similar drug the actually injection is scary but it's honestly not that bad over in a flash. I'm so sorry to hear it sound awful and completely life changing diagnosis no one understands the pain unless u suffer it. Being a women is a punishment I think especially with this chronic disease. It will help reduce the pain for u. Give it time to kick in and keep a diary of ur symtoms on it. I had 3 months no hrt and and month with and I had to stop hrt it gave me worse side effects but that's my body everyone is different. The side effects again r different for different people but u can deal with hot flushes etc. My mood and tiredness increases when I'm due the next but keep diary and always discuss with ur consultant. Good luck...u will be fine. Look what u have been through u will manage this treatment. X

[Kazza2311 in reply to Kmlittle]

Good luck with you too I need to try something it just gets you down doesn't it you learn to deal with it to a certain extend just need a quality of life back I feel like a monster with two heads some days xx

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I have had 5 injections of the monthly decapeptyl, which I think is similar. The first month was tough and I was all over the place, but things started to settle with the second. My periods have pretty much stopped (I am still bleeding in the last week of the month, but it's just spotting really, not the dreadful can't leave the house in case I have an accident bleeding that I had before).

The really terrifying pain I was having with my periods has gone. I am still having the day to day pain, but I've been told this is due to the adhesions and the decapeptyl won't fix that. I'm taking ibuprofen/over the counter cocodamol for that (plus laxatives, sigh) but it is at least manageable. I haven't gained weight but I am unable to lose any either. I've got water retention, sweating, some hair loss. I also had quite bad joint pain in the first couple of months, and memory problems. However I am significantly more active than I was - I've been able to start running several times a week, which is helping no end, and despite all the side effects, it's worth it for me as my pain was off the scale.

Intending to stay on it for the forseeable future as the thought of going back to where I was is unbearable.

[ScarletK]

I had my first Gonapeptyl injection last week and am the same as you, extremely anxious. My consultant has prescribed me HRT tablets for if I experience side effects, so far, so good.