Decapeptyl side effects : Hi guys i have... - Endometriosis UK

Endometriosis UK

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Decapeptyl side effects

Laserlyte profile image
8 Replies

Hi guys i have what they origiablcalled.mild endometriosis as i have had ovarian cysts removed on a number of occasions, my gynaecologist for the last 2 years just kept dismissing me and told me to go away and have a child it would wase things. Apart from this being highly inappropriate to say it is not a possibility for me. On my last visit i met a female gynae who believes a lot of my cysts are secondary to the endometriosis which she now believes is in my cervix ans fallipian tubes. She has recommended decapeptyl 11.25 mg i jections for 12 mo ths. I have been given no info only rhat side effects can be bad and cant be undone until the meds has metabolised. I already suffer with IBS, coeliac and tinnitus, i am afraid that it could exacerbate these along with whatever other side effects it can bring. Has anyone on here had any experience with this dose and if so how was ir for you. Thanks for reading

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Laserlyte profile image
Laserlyte
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8 Replies
Lu25cy profile image
Lu25cy

I had those injections I never got any side effects deffo worth a go xx

MelissaHewitt87 profile image
MelissaHewitt87

Hi

I have those injections however only the 3mg ones every 4 week , have sweats like you’ve never known but they do ease off they normally give you hrt with it however I’m too anxious about hrt so I don’t wanna take it I take herbal tablets instead I’ve had two injections started off with sharp pains in head and go down arms , other week my wrist was in a splint couldn’t move it referring me to rheumatology however I think it’s side effects from the jabs …. I can cope at moment but I have a fair few aches and pains in arms and knees , I’ve a 10 cm cyst and need surgery god knows how long I’ll be waiting good luck xx

Marvel- profile image
Marvel-

Hi,I was on the injections for 9 months, had a break then went back on them for 6 months but had to stop. I just felt so unwell, I had constant nausea and dizziness so came off and have since been on the minipill but there's been no change yet. What made it worse was I couldn't get in touch with the consultant due to covid so I felt that I had to suffer in silence.

I'd say for me the positives were that the injections helped massively with pain management but it's if you can manage the side effects of the drug. Everyone's different.

I hope this helps a little.

Luc81 profile image
Luc81

I would be careful with decapeptyl, everyone is different so everyone has different experience , is very powerful injection, I loved it and then I hated it, side effects are real and long, try it for month if u want, see how u feel ,then for 3 months but I would not go for a year as for first time , also there is minipill or vissane for endo I think. Or supliments and diet helped me massively but as I said everyone is different , its a tough journey hun. I'm sorry.

If you ever gonna have laporoscopy again,make sure is endometriosis especialist, nothing less. the difference is huge! Good luck

Endoarmy92 profile image
Endoarmy92

I had those injection for 5 months, and i had an allergic reaction to them which ended in collapse and a head injury, but from what everyone else experienced.. after the initial 1-2 months when it settled, it worked well for me up until that x

SilverBirch7 profile image
SilverBirch7

Hi - I’m on the monthly decapeptyl 3mg. I was extremely nervous about taking it. But honestly I’ve never felt better. No period, no mood swings , massive reduction in pain. Only side effect is flushes and sweats but they are nothin compared to endo. Maybe try the monthly in case it doesn’t agree with you? Good luck with everything!

Escapologygirl profile image
Escapologygirl

i am coeliac and underactive thyroid too - was put on decapeptyl 3 month injections at a time and lets just say worst time of my life - the bursting into tears - constant nausea, bloating, fatigue, nonstop migraines and acne is unbearable and i stopped after 2 injections and will never go on them again - i would rather put up with my endo than life on those injections.years ago i had surgery for my mastoid in left ear and these injections have exacerbated my vertigo - it just comes on me suddenly and can last mins or days so i wish you luck

Doneggivf profile image
Doneggivf

hi Laselyte, how did you get on with your treatment? I also have ibs and avoid gluten and was wondering how your side effects were

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