Anyone else experience no improvement with decapeptyl?

[Kangalou]

Ok, so it’s early days but I am almost three weeks into decapeptyl treatment. I’m taking the 28 day injections so will have the second next week. My consultant prescribed me HRT (tibolone) which I’ve been taking since I had my injection.

The consultant said to expect ‘some bleeding’ 10-14 days after the injection which appeared in the form of the heaviest period I’ve ever had. With it came the usual terrible period pains and these haven’t died down. My period finished four days ago and I’m still finding these pains really debilitating.

I am still experiencing daily stabbing pains low down in the right side of my abdomen (right ovary?), along with dull pelvic and lower back pain which radiates into my legs.

I’ve had quite a bit of time off work this year due to a hospital admission for endometriosis-related plain plus a further admission for a laparoscopy. The lap was done privately through my employer’s health insurance and if I’m honest, it’s clear they are expecting me to be ‘sorted’ now.

I’ve read lots of stories about the side effects of decapeptyl being unbearable - that’s not my experience so far - just chronic fatigue and headaches. But I haven’t heard any experience of people whose pain doesn’t subside.

Anyone experienced this? Would really appreciate any info. My laparoscopy only showed stage 2 endo so think my consultant was wondering whether my pain might not actually be gynae pain. I’m worried that in telling him the decapeptyl hasn’t made much difference he will send me off for yet more investigations (maybe colorectal?) and I’ll continue to be in this seventh circle of hell. I’m sure my pain is gynae- related - particularly as it’s so painful following my period.

Would be great to understand if I’m alone in this experience - feel like I’m going mad!

[cherry78]

Hi Kangalou, I am on week 4 after my first decapeptyl injection and due another one this Friday. I also had a heavy period a couple of weeks after the first injection and I'm afraid I am still suffering from the same endo pains. I have been told by those who have been on it longer than me that there could be a flare in endo symptoms in the first two months and then it settles down after that so I am seeing how it goes for another month or so before I decide whether to carry on or not. I am expected to stay on these injections up until my hysterectomy which is looking at being about 9 months time, which concerns me as usually recommended that you are on it for 6 months. I haven't started hot flushes yet so not taken hrt but will do once I get those. I can assure you that you are not going mad and in my view it is highly likely that you are experiencing similar to me as it flares up before settling down. I have also suffered from feeling even more down and tired than usual + being more moody with my husband Hope you feel better soonx

[Kangalou in reply to cherry78]

Hi Cherry - thank you so much for replying - yes, I guess this could be a flare up. I have read a little about this but wasn’t sure when it strikes. I have to say my consultant was a bit ‘vague’ about side effects!

He just told me that side effects from decapeptyl were always mild and to expect a ‘bleed’ and then no more periods. He told me I’d get back to half marathon training soon!

Maybe he is right but I think I would have preferred a bit more of a heads up about this stage of things.

I need to email him this week about my progress and was panicking about what he might say - eg I can’t help you anymore/ it’s all in your head - or something. I think it’s easy to doubt yourself.

I’m sorry you are having this too - but thank you so much for the reassurance. I really appreciate it.

I haven’t really felt down - but definitely a bit more easily frustrated and less motivated than normal. I’ve put this down to tiredness. I’ll tell my husband that I might be moody next week - he’ll likely appreciate the advance warning!

I’m taking a menopause multi vitamin in the hope it will also help balance things out. Ever the optimist!

Take care and thanks again xx

[GemParki]

The first month of Decapeptyl is a flare up, I was in horrendous pain and bed bound for two weeks. I’m now five months in and my endo pain is non existent! I’m waiting for surgery after diagnostic lap that found widespread endo on left pelvic wall,urethra and both ovaries.

The stage of your endo does NOT reflect the level of pain you experience. You are not mad Endo is just widely misunderstood, in my experience getting a specialist endo consultant is key

I’ve had four laps over 15 years and been blessed with two pregnancies after each (bar my last diagnostic) I have been told I was ‘cured’. Now I have an endo specialist I will not be discharged until I go without symptoms for 2 years.

I’ve had various stages (1,2,3) mentioned to me over the years I’m not sure what stage I’d be considered now all I know is that if left untreated it is hell!

YOU are not going mad. Xx

[Kangalou in reply to GemParki]

Aw thank you. I have emailed my consultant and he has come back to me saying that he thinks this is a normal flare up and consistent with endo. He had mentioned before that perhaps there were ‘other things’ wrong as well as the endo. The last thing I wanted was for him to refer to some other speciality.

I really appreciate your email - this is a lovely community.

I’m delighted that you are pain free at the moment - I hope it continues xx

[Heatherd1986]

I had my injection 17 days ago, knew I was due my period got all the normal sign, period is lighter I suppose but the pain in my left side and down my left leg on the inside it's hellish. I'm on decapeptyl with Hrt been ok except this pain. Was on decapeptyl last year with no get and only lasted 2 months as the anxiety was horrendous this time round don't think I'll take the 2nd injection as this pain is worse than usual. It's my lower back, lower abdomen left side and inside left leg all the way down but more so my calf.

[Kangalou in reply to Heatherd1986]

Thanks for replying - i am getting similar pains to you - but on my right side. I’m not feeling anxious (yet!) but am also having horrific headaches, pain in my neck.... also hot flushes but they’re not bothering me.

I’m sorry it’s not working out for you - sounds like you are taking the monthly injection too? My doctor seems to think it’s the stupidest thing to stop taking it.

But he doesn’t have to live through it.

Best of luck with whatever you do xx