People's advice about coming off decapept... - Endometriosis UK

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People's advice about coming off decapeptyl 🤔

Pureunicorn
Pureunicorn

Hi all 🙋‍♀️

So I'm looking for some advice and others experience of coming off decapeptyl injections, I've got stage 4 endo and I'm waiting for surgery 🙄 I've been on it for nearly 1year, I am starting to feel that it's not working aswell as it was 😔 I know I need to lose weight but I'm finding it so hard and I dont think the meds/injection are helping with that! I'm just feeling so crap about everything and dont know what to do anymore 😭 I've not heard anything from my specialist for months either, which is probably the same for everyone! I just feel forgotten!!

Sorry for the ramble but just need some advice, thanku xx

15 Replies

Hi again. I’m sorry to read this , I’ve replied to you before . I’m sorry you feel like this , I’ve nearly been on it a year. I have recently experienced pain and my gp told me it doesn’t always suppress your hormones , possible was told ovarian cyst or endo flare up. What surgery are you waiting for? I phoned my gynae secretary and have a telephone appointment next week.

I feel like it’s working that well. Had no menopausal symptoms either. Thought I was going mad .

Hiya, nice to here from u again 🙂 I've been bk to gp, I had a scan just before Christmas, they couldn't see anything new 😒 I've just had bloods taken n I'll be getting my results tomorrow as I have another phone consultation with gp to see what we do next! I'm waiting for a hysterectomy, but I just need to find out what these new pains are, it's really affecting my sleep and my day to day life again, I'm taking more painkillers again just to get through the days and nights. I did suffer with hot flushes but once I started the HRT they stopped.How have u been? Are u waiting for surgery? I hope ur phone call goes well next week, u will have to let me know how it goes 🙂 xx

I’m very tired and recently been off work for pelvic pain possible endo pain. I’m waiting a hysterectomy too was going to be March now estimated June. I don’t feel as good when I first started taking this.I hope you get a date soon.

Hello I don’t take the decaptyl injection but read your post about not being able to loose weight. I use to have the injection many years ago in my bum as form of contraception, not sure the name of it and I could never loose weight, piled a whole lot on. Then I got the implant twice in my arm so a total of 6 years, again weight gain and couldn’t shed the pounds. Since I don’t have any of these and only take the pill, the weight fell off. So please don’t feel crap as you could try your hardest, I feel these things put weight on in my opinion x

Hi AllthatGlitters,Thanku for ur message, I just dont know what to do anymore! The injection has helped my pains but if I dont lose some weight they may turn me away for surgery (cos of covid) but the injection n meds make it hard to lose it 🙄 it's like a no win situation!! They say being on the injection stops the spread of the endo so why am I getting these pains and there getting worse 😭 xx

Morning. I refused that injection. I know how my body reacts to things like that. Can you speak to your doctor about any alternatives? I obv don’t know what else you have tried. I am not at the stage of hysterectomy. My lap and 2 ablations haven’t worked. It’s so hard to live with these conditions isn’t it? I have adeno and endo xx

Morning, I've tried most things now! This was my last resort really, other contraceptions I tried gave me really bad headaches and I kept bleeding! It is really hard living with endo! I never suffered untill I had a miscarriage about 5 years ago! There is just so much to get ur head round and covid hasn't helped any of us with this either! How long have u been suffering? What's ur next move? Xx

Hi I have been suffering about 4 years now, well that’s when I got a diagnosis. I was always tired and sore stomachs from teenage years, but I believe it wasn’t IBS as I was too, sure it was these gynaecology problems. I am 39 now and glad to know what is wrong with me. Doctors have said my options are minimal, pills don’t work, ablation didn’t work and now it looks like hysterectomy. I want to leave ovaries in as really not ready for the menopause, think I would be mentally ill if I had to go through that as my journey to date has been very difficult. I got my ablation done during Covid as I couldn’t stop bleeding, had been on a period for 14 months solid, however for routine appointments Covid has really stuffed it up. Hopefully things get back to normal at some point this year so we can all be seen quicker. How are you today, do you get pain every day? X

Sounds like uve had a hard time, it's just always a fight to get anywhere 😔 I'm not feeling great today, had a phone call with gp and he wanted to see me, so I've just got bk, thinks my endo is getting worse and has given me some different tablets! Hopefully we will all hear something sn 🤞 xx

Hope you are a bit better now?What tablets did you get?

When you wake in the morning you don’t know what is going to happen that day, how you will feel pain wise. I feel like I can’t plan anything (not that there is much to do at the mo) 😀

Hiya, gp gave me buscopan to try instead of the Morphine, still not feeling great! I know what u mean! X

I have been refused morphine. Told i can only have tramadol, although I have had several episodes in A&E and been given morphine along with an overnight stay x

I was on tramadol but it just didnt help in the end, ended up in A&E couldnt stand or sit, stayed over night on so many painkillers I felt sick 🤢 they think one of my cysts ruptured 😬 that was over 2 years ago, I only take the morphine if really bad but it's just nice to know I've got it if needed! I dont understand why they wont let u have it, especially if ur already taking tramadol! I've tried so many different things x

I know, tramadol makes me feel drunk and all I can do I go to bed and sleep on it. It also makes me feel sick and if I have to take it in evening time for pain, I don’t get to sleep as I feel really sick on it. So I am better to be in pain from morning time lol I have had quite a bit of pain recently with clots, it’s horrid x

That's crap! The only good thing about the injection is that I dont get periods! And its helped alot with the pain, just isn't working as well as it was 😔 I'm going to email my specialist and see what's going on and ask if there is anything else I can try! Not expecting anything will happen but worth asking! Xx

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