Decapeptyl SR side effects

[asoullessstatic]

Its been a while since I posted an update, but after 40+ weeks of waiting I finally got to see gynecology. The endometriosis specialist says it sounds like I have severe endo (given the peeing blood while on my period, bleeding from behind and the extreme pain). I'm now on the complex endometriosis surgical list for a diagnostic lap but the wait list is around a year. So we've got a long way to go still. I was sent for a contrast MRI the same day, they found endo nodules in the pouch of douglass, around my apendix. I had a sigmoisoscopy in January as well where they found endo patches and blood on the side of my colon and bowl.

I’ve found a lot of useful pain relief from gabapentin + metfenamic acid and cocodamol. However prior to my gynaecology appointment we tried tri-cycling the pill and it was one of the worst things I have ever experienced, I had screaming migranes, throwing up, and then had a full period while on the pill and 16 days of hell insued.

Because of this we decided to attempt the GnRH agonist. I had my decapeptyl monthly injection 5 days ago, and I take add back therapy in the form of tibolone. About 24 hours after it I got an incredible migraine and felt absoloutely awful. Thankfully this has now passed, but I’m getting really bad hot flushes and night sweats. This morning my endo flared up worse than every before (I was warned this would happen), and I started spotting. It feels like my back is going to snap and I have appendicitis. I knew this was coming, and I’m looking forward to being on the other end of it and hopefully seeing some long term benefit. I was wondering if anyone else has had this jab, and how long did you experience the worsening of symptoms?

[evilcat99]

I had my 3rd Decapeptyl injection 2 weeks ago. I also had horrendous pain and side effects for 2.5 weeks. I was in more pain, headaches across the front of my head, bleeding etc. I took more pain killers at work and went in a meeting, came out and the pain had gone and has never returned. Everything stopped and it's given me my life back. I've been pain free since then and it's been first time in ten years. When they give me the next injection for a few days I do get the headache across front of my head but soon wears off.

All I would say is stick with it, it does work.

[asoullessstatic in reply to evilcat99]

Thanks! I've got my second injection on Wednesday. I'm feeling better then I was, took about 2 weeks for the side effects to clear through but I've found myself being much more calm and relaxed, and in less pain (though still a lot of pain). It's like I have more good days than bad days now. You're not kidding that sticking with it has real benifits. I've started going back to Karate (I haven't been able to do it for almost 8 years because of the pain), and I've found myself the last two weeks not having to take any days off work because of the pain. It doesn't get rid of it all but whats left can be dealt with by the rest of the medication.

Thanks for the heads up about the headaches after injetion though! I didn't realise you'd get that after the subsequent injections. Will make sure I'm ready to deal with them

[evilcat99 in reply to asoullessstatic]

Glad your feeling better. You may not get the headaches after the next shot but it's a possibility. Still nothing like how horrendous you feel before.

[asoullessstatic in reply to evilcat99]

Yup, I got a migrane about 12 hours after the jab! Though 48 hours on I'm feeling fine, thanks for the heads up on it again, meant I was expecting it and was ready for it! I know a lot of people gripe about the GnRH jabs but I have to say while the start up side effects were horrid, 4 weeks on I've got less side effects than the pill and I'm not having the insane mood swings and really dark thoughts I got with the pill. It's nice to find something that makes a difference even if its not a cure.