Decapeptyl injections

[Endoarmy92]

Hi everyone,

This is my first post so please be patient!

I was on Zoladex injections previously a few years ago, and had terrible side effects. I recently had Lap surgery again mainly for management of Ovarian Cysts and they've found the endometriosis has spread to my pelvis, pelvic wall, bowel and rectum. My consultant wanted me to go on Decapeptyl injections for 6 months as i haven't had a period since February.

I agreed to go back on them out of desperation. My first injection was around 3 weeks ago, but i've been having daily pains for about 10 days and sometimes they have been so extreme i cant move for an hour or so and physically cant stop crying until pain relief kicks in - i've since linked this to possible bowel movements perhaps?

I have been having some restless leg problems, sciatic pains in my bottom/top of my legs, hot flushes and emotions are all over the place!

I just wanted to know if you have any tips about how to cope with it? I'm still working from home due to COVID which makes it a little more manageable, but sometimes i don't know what to do with myself and i dont have any friends who understand the rollercoaster!

Thank you guys,

A very fed up and frustrated girl!

[ber_dock]

Hiya..👋Welcome to the group and it’s great you had the courage to post for the first time.

Sounds like you’re really going through the mill with the side effects.

I can totally relate as I’ve had the Dec injection and had quite a lot of severe side effects.Everyone is different and every time can be different too

I’m glad that you eventually found out that you do have Endo and quite a lot of other problems aswel..least you now know the truth albeit not the best news

It’s incredibly painful and always know you’re not alone ❤️

Hope you’re recovering well from your op?Did they attempt to remove it all?

Did they try to remove the cells from your bowel aswel?Sending you a big hug 🤗

The sciatica and restless leg are horrid,I get chronic burning & nerve pain in both legs & butt so I feel your pain hun.But I had always put it down to Endo in the utero sacral ligaments but who knows 🤷‍♀️

I always lay with my back on the floor and legs up against a wall to gently move the muscle and nerve.Dont over stretch tho as it can make things worse.There are quite a lot of vids on YT that can help also.

Have a gander,also try a meditation vid for just ten minutes a day can really help clear your mind while you’re experiencing such severe side effects.Breathing techniques can really help lower your blood pressure and stress levels.

It takes motivation to keep it up but you can really feel the benefits and regain some mental clarity.Guided meditation 😊

I totally recommend a hand held massage device.I have a plastic octopus 🐙 and the legs are balls

i rub or get my partner to rub my glutes & thighs etc with coconut oil.

It’s absolutely agonising but Its important to move the muscles - so massage is ideal

Use some aromatherapy oils too,they help a lot to reduce inflammation and soothe.

I use comfrey oil with eucalyptus but there’s some lovely combos you could try.It also helps with mental wellbeing

You can get those electric drill massagers too which are great 👍🏻

Have they gp mentioned any other medications for the sciatica type pain?Have they ever refer red you to a physiotherapist or have hydrotherapy if your hospital does that?

I don’t envy you with the hot flushes..mine was absolutely unbearable, couldn’t stand it.

These hormones are not to take lightly, unfortunately for us girls it’s hell.

I know how you feel not being able to talk to your close friends about your medical journey.

Always know that you are in the right place for support - if you want you can follow me and I’ll send you a pm

Hope you have a good support system while your recovering from your operation?Lots of self care

❤️

[Endoarmy92 in reply to ber_dock]

Hello! Thank you so much for replying, it really is helpful to know there are so many more people going through this storm of rubbish!

I had my second injection yesterday... I couldn't sleep last night (potentially stressing about going through the flare ups again) and this morning i have the most hideous headache and feel super groggy and nauseated.

When you had the injections did you see some kind of cycle of flare ups in pain and symptoms? I did have a flare up 2 weeks after the first injection, but i dont know if it was just my body or if it was due to the injection? I JUST DONT KNOW ANYMORE! 😏

Luckily i have been seeing a womans health physio for the last few years on and off, and shes fantastic, always full of little tips on how to manage sciatic pains, and breathing techniques which have been a god send.

I will definitely try the oils and massage to see if it helps.

I am recovering well from the operation really was sore up to 4 weeks after on and off. When they went in to operate as it said it was primarily to get rid of cysts and when they opened me up they had gone. (I was at the gym around 5 days prior to my operation and had acute pains in my lower left and right side of my pelvis, vomited, nearly collapsed, and had to stay in bed and start the never ending list of pain relief like we do.. turns out it burst and twisted while i was there). But they lasered the endometriosis from the pelvic wall while i was there, but couldnt remove the endo from my bowel and rectum as there was no bowel specialist available on call so that's very much still there.

How long have you been diagnosed for? Honestly, thank you so much. Really needed to read your message today xxxxx

Sending healing hugs

❤️