Decapeptyl injections experiences

[Illy-lory]

Hi ladies,

Going in few hours for my first monthly decapeptyl injection due endometriosis, and unbearable pain, while I'm waiting for a partial hysterectomy.

I know that everyone's different, and everyone reacts differently, but can you please tell me about your experience with these injections? What side effects did you experience? Or did you experience any at all?

I'm really anxious about having a chemically induced menopause at 32, especially considering that I never reacted well to even the smallest dose of hormones.

Thank you for taking your time! X

[AllthatGlitters]

Hi I don’t respond well to hormones either, previously had the pill, implant and injection in my bum, all of which made me swell up and put on weight. My last hope was the decepeptyl injection, I am 39 & struggling with labour like pains and heavy bleeding.

The consultant asked me to go onto decepeptyl because it “mimics” a hysterectomy and they had to know that it would work for me before putting me through the operation.

I got the monthly injections for 6 months, stopped it last month because I was having dark moods and swelling and slight weight gain.

The first injection made me bleed more for the first 2 weeks and then it calmed down, no pain. Overall I have had break through bleeding but very little pain. It’s been nice to have a break from it all.

I would say see how you get on with it, if it doesn’t agree with you don’t take the next injection.

Also on HRT patches and this has helped massively with the hot flushes and night sweats. Although I am off the injections I am still being kept on HRT.

Hope that helps you a little 🥰let us know how you get on x

[Illy-lory in reply to AllthatGlitters]

Thank you so much for you reply. It helps alot.Just got it done, and I was so nervous.. my consultant said to trust it, that it could help, and I really hope so.

He gave me hrt but said to only take it if I experience symptoms.

He said I shouldn't have a flare up with bleeding as he gave me this injection while on my period.

Really hope it helps, been in pain 24/7 for 28 days straight 🙏🙏

When are you getting your surgery? How are you feeling now?

[AllthatGlitters in reply to Illy-lory]

Hi I am waiting for my appointment to discuss a hysterectomy, it should be within the next 6 weeks so I have been told then I will go onto the list for a hysterectomy. No idea how long that will take tho 😢I am feeling okay but had to up my HRT as hot flushes came back after I stopped the decepeptyl, menopausal symptoms are horrid. If you have menopause symptoms I say definitely take your HRT as it took about 3 weeks for it to kick in for me and it does make a big difference.

How long will you wait for surgery?

What other treatments have you had? Xx

[Illy-lory in reply to AllthatGlitters]

I am due to get my surgery on the 8th of January. Fingers crossed the injection will work and I'll be able to "live" through Xmas. He gave me HRT but told me not to take it unless I get side effects, which I'll probably get.

I tried various pills and the coil in the past but I was a wreck. Literally unable to cope with everyday life. I had CT scans, pelvic MRI, and ended up in the a&E so many times that I lost count.

I simply hate my reproductive system, and so many times I felt that I just want to rip it off, with my bare hands.

My genes are pretty hectic as well, with cancer in my family, fibroids and the list goes on.

I sent off my sample for the BRCA 1 and 2 genes, and I'm very scared.

One thing I want for sure is a hysterectomy.

I've been 4 months marriage and there's no life, can't even go out to dinner , nevemind being intimate.

This has been affecting me mentally so much that I'm depressed and moody and an unmitigated b@@%t at times.

How bad are the hot flushes? I never had one in my life... providing it doesn't affect my mood, I'll take pretty much every side effect.

Apart from flushes, did you get headaches, bleeding or anything else? I know we're all different but just trying to prepare myself for the worse.

With regards to your hysterectomy, if your symptoms are really bad, can't they take that into account?

My god, I really hate how long everything takes, it feels like medical professionals are simply immune to women's suffering at times!! Xx

[AllthatGlitters in reply to Illy-lory]

Oh I never got headaches. Break through bleeding. Dark mood which I say is like everything is negative and can’t pull myself out of it. That could last a day and the next I would be fine 🤷‍♀️So I don’t understand why as I try to stay positive.It’s so hard though isn’t it.

Have you had any form of counselling?

I had CBT to help me cope with my problems x

[AllthatGlitters]

That’s great news you have a date for surgery. Where I am it seems to take forever to see a gynaecologist and you have to chase them up too. Fed up hearing my own voice moaning. I have tired the pill, several of them, 2 ablations which failed. Only thing left is hysterectomy. No choice. If i want a life I have to get it done.

Like you I have been in A&E so many times I have lost count, always keep me in and put me on morphine and then the next day I spend vomiting because i can’t handle that in my stomach.

Also have fibromyalgia. Being investigated for bowel problems too at the mo.

Sorry to hear you are having to go through the BRCA 1 & 2 test, I hope you don’t have a risk of the cancer.

Hot flushes, well it feels like someone has shoved your head into an oven, comes on all at once and no wanting, it’s horrible 🥵🔥 have a look at the “balance” app by Dr Louise Newson lots of information there about the menopause xx

[Illy-lory in reply to AllthatGlitters]

Hun, you seem to have a lot going on. The sooner you get your operation the better...fingers crossed you'll get a date soon...Thanks for the tips, I shall check the app ASAP... hopefully we will both find strength within and overcome all these health issues xx

[AllthatGlitters in reply to Illy-lory]

I know it’s tough day in day out. Keep in touch x

[Illy-lory in reply to AllthatGlitters]

Hey hun,

Just wondering, after your injection, how long did it take to have side effects?

I had a really rough night last night, felt pinches in my calves, restless legs and felt like I had a hairdryer blowing hot air all over my face and chest...? Surely, can't be the injection already? 😔

[AllthatGlitters in reply to Illy-lory]

Hi I had menopausal symptoms before i had the injection but they just got worse after my first injection until I got put on HRT which took about 6 weeks for the doctors to give me patches. Life felt like hell. The bleeding which was very heavy started immediately. I thought when I had the 1st injection what have I done as I couldn’t cope with the symptoms. They settled down though.

The injection basically puts us into a menopause and shits our ovaries down so maybe symptoms can be straight away 🤷‍♀️

Can you take something for your sore body? I am currently on nortryptaline and also take ibuprofen when needed x