Decapeptyl and livial help

I'm on day 4 of first decapeptyl injection and I'm taking livial too. I'm being treated for suspected diaphragmatic endo. I've been experiencing nausea, lightheadedness, low mood, stomach pains, headaches, spotting and no change in endo pain which I have in my shoulder, neck and right lung so I feel much worse than usual instead of better. I was wondering are these side effects likely to calm down when my body gets used to the medication or is it likely its just not agreeing with me and they'll continue throughout? I've also put 3lbs on in the last 4 days after working hard for the past while to lose a stone :-( I never really get depressed but this is all getting to me and I don't really know anyone who has experienced this to talk to about it. I'm 37 and have 4 children. Thanks for any advice you can give.

14 Replies

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  • Hi. Im on 2nd week of first injection. Im not having a easy time of it either im afraid.. Im so tired , stabbing pains every were, stiff neck and really low mood, my ovaries feel like there being stabbed. Im in bed at moment and just off fone to gp who has advised me to go to a'n'e to get checked over.. Altho he says most of them symptoms are common. Im dizzy and keep blinking its wierd. Hope u get sorted .claire x

  • Sorry didnt explain that what we are having is a flare of symptoms (another lady told me) but if u are in extreme pain and cant get comfortable (like me :( ) ring ur gp and have a chat. Xx

  • Hi Claire, are you taking any HRT? I don't know whether to come off the livial and see if I feel any better but I'm afraid other symptoms will kick in then and I'll be worse off :-$ I'm working night shifts this week and its seriously grim. Do u take mefenamic acid? It helps with my pain and I'm really tempted just to not get any more injections and just live with it but then I feel doped up most of the time! I hope u feel better soon x

  • Im not taking hrt , wasnt offered that. Up to now i really dont like this injection. M.Acid didnt work for me. Im usually doped up to. Its not fair. Hope u feel better too x

  • Hi,

    I'm on my 2nd 3 monthly Decapeptyl injection (no hrt for me)

    The first 3-4 weeks were hell, it was like endo on steroids!! (migraines, pelvic pain, back pain, dizziness, feeling depressed, nausea & feeling really weird) - your body is flooded with hormones before they shut off & this can make your symptoms much worse. Luckily I was warned that this would be the case!

    I have had virtually no pain or endo symptoms since the flare subsided :D I do have menopause symptoms - hot flushes, night sweats etc - as I'm not taking hrt for this 6month stint, but these I can deal with (they're nothing compared with before!!)

    This injection has given me my life back. I know it doesn't agree with everybody, but for me it's been a miriacle. I knew I was sick before but I didn't realise how bad I was, as it was normal.

    Just hang in there. This bit does pass. I hope that this works for you & you have as much relief as I have had.

    Claire P x

  • Thanks Claire P, I could cope if I thought it was temporary. When I get the second injection will I get another flare up? And have u put any weight on? Maybe I should come off the livial and see how things go without it?!

  • Hi,

    No problems with the 2nd one (just a bit sore at injection site!) I dont think you should get another flare.

    I haven't any gained weight but I am actively trying to lose the rest of the weight I put on whilst it was ill (I'm doing the 5:2 diet & am completely gluten & wheat free which has helped with the bloating).

    I would wait for the flare to subside & if you find that you aren't coping with the livial then go & see your GP.

    Hope this helps :)

    Claire x

  • Hi

    Just thought I'd add my experience, I'm on prostap so similar. I've had 8 doses so far and having a 3 month injection tomorrow. Its quite normal for things to definitely get worse before they get better, before I had my injection my gynae told me to expect the worse for a week or so and that it would be 6-8 weeks before I would notice any improvement. He was completely right, I nearly didn't have the 3rd injection but so glad I stuck with it as from 8 weeks my pain has almost completely disappeared and I feel like I've got my life back. Been on hrt for the past 2 months which I did react to initially (headaches etc) but have calmed down now. Weight gain is one of the worst things though, I gained some weight in the first 6 months of the injections but its seriously got our of hand since I started the hrt so not too impressed but I'm trying to be strict with myself to counteract it.

    I hope things settle down for you and you start to get some benefit from it, and any concerns etc just go to your doctor etc as these are strong and powerful drugs xx

  • Hi

    I agree with Knocksmallmum , I have had the injection for 3 months b4. Then off them for 6 mths now back on then b4 surgery. I was told not to take hrt unless I really needed to so u didn't. Thought the injection was fantastic for me, yes the 1st month is worse knew to expect this, had a week of migraines, bloated, period and spotting all wk but this will go. Then I remember I had a few night sweats and a few mild panic attacks but I coped. All the pains for me settled down. I do think that my short term memory has suffered a bit but its better than the pain of endo. I also panicked about my weight but I was already a slimming world member 1st month couldn't lose but after that the weight dropped off without the usual water retention and bloating that your period brings. I'm 2 and a half stone lighter since last sept so it can be done.

    Good luck hang in there and consider coming off the hrt.

    Malred8

  • Thanks so much for ur comments. Last might was a bit better. Felt really nauseous and was still in pain but my mood was more normal lol. I'm finding that after I eat I'm getting a strong cramp pain in my upper abdomen that lasts about 20 minutes and really takes my breath away. I'm not sure if its trapped wind or what but its making me afraid to eat! I'll try taking the livial before bed tonight and see if that helps with the nausea etc as I've been taking it before going to work this week as have been working night shift. The consultant just have me the script for the decapeptyl and livial and told me to start both. When I asked about side effects she just told me the livial would combat them. She never said anything about things getting worse before they get better :-$ I'm glad ur finding relief - its horrible being in constant pain and doped up just to function! I just hope its worth it for me as I'm only taking the injections for 3 months and hope it kicks in before then x

  • Just thought I'd update in case anyone is interested. I'm now day 20 after first decapeptyl injection. The first week was horrible as I felt so sick and tired all the time and still in pain but once I began taking the livial at night before bed the side effects went. The pain remained unchanged but I'm hoping I'll notice a difference when next period would've been due and the pain normally intensifies. The only issue I have is I've started bleeding today. I know this can be common during the first month but I'm hoping it doesn't last too long!

  • For some they do report things getting better. In my case (zoladex) they just got progessively worse as the months went on, and stupidly i thought he doc had put me on these drugs to help. They certainly did not and made my life a misery for months, so having now had the calm after the storm and been able to really investigate these drugs, please do not suffer more than you can bare. You can stop the process if you want to, don't feel obligated to carry on if you have ended up with a drug that doesn't suit you. They are not life savers, they are not antibiotics battling infections.

    They are artificial chemicals that shut down a part of the brain, and that does have consequences unwanted consequences on the rest of the body. And if it is far worse than coping with endo pain by taking appropriate pain relief then stop the GnRH drugs and get back to how you were before and write it off as a 'tried that, didn't suit me', treatment.

    The early stage is a flair and is for many the worst part of the process, but the horrid side effects may not be gone for good and could come back at any stage in the following days and weeks and months.Each of us is different and it certainly is a gamble taking these drugs for all the good they would do your endo, they can do quite a bit of harm to quality of life too. Please stop if you have to, don't torture yourselves for nothing.

  • Just a quick update...since I last wrote things have gotten much better. I've had my third and last injection and have had hardly any pain except a bit of neck ache, no more bleeding, no weight gain and few side effects. In fact I'm really dreading the injection wearing off. I don't want to go back to the constant pain and meds. Decapeptyl and livial really are making such a big difference and I'm so glad I decided to try it. Thanks for all the messages and support x

  • So I've now had my third and last decapeptyl injection in this course of 3, my second course of injections since July 2013. The injections have been a Godsend. I've had no pain at all while on the injections and minimal side effects. Once the injections wear off though, I'm back to square one. Because the endo is in my diaphragm, the hospital won't operate to remove it. In fact they won't even do any scans because apparentely even if it shows up, it's pointless because they won't operate. I tried the pill which made it worse and my doctor doesn't believe the Mirena will help because the endo they need to treat is not in my womb. So, the consultant said on Thursday that I have no options left other than a hysterectomy. He's agreed to one more course of decapeptyl first as long as I have a 3 month break between my last injection and the next one, but has said I can't have any more after that due to the possible effect on my bones. I've googled but cannot find much about my condition and in particular if a hysterectomy stop the pain. I know I can't go back to living with the pain as it's just not sustainable, shiftwork + 4 children + heavily medicated and in pretty much constant pain is just no life, but I also don't want to rush into such a major operation. Any experiences or advice would be so welcome. I will be asking for more information when I next speak to my Consultant, i.e. is it a full hysterectomy or just my ovaries that need to be removed etc. To be honest I wasn't prepared for him to advise it and didn't think of what I should have asked. Thanks for any help you can give me.

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