Has anyone had bad side effects on decape... - Endometriosis UK

Endometriosis UK

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Has anyone had bad side effects on decapeptyl and HRT?

12 Replies

I'm on the hormone injection and HRT with a cocktail of painkillers, had two bleeds lasting 6 days at a time, blinding headaches, severe ovary and groin pain, today I was curled up screaming with a blinding headache and ovary pain :(

My husband is lost in what to do, I'm feeling like I'm never going to get better

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12 Replies

I had it with livial addback. Sadly it didn't stop my periods and was abandoned after the 5th injection when I ended up in A&E with pain. You really need to get in touch with your consultant ASAP and tell them you are having problems with it. It doesn't work for everyone. Hope you feel better soon. x.

in reply to

Ye I feel I'm worse, it's been 4 weeks so still early, I was given this injection last month in hospital after I went to A&E as I couldn't take anymore, had 3 day stay and feeling worse off 😢

in reply to

If this is your first injection sadly it does get worse before it gets better. It causes a hormone surge in the first few weeks before you go into menopause and it is rough. You may find things improve after the second injection if you feel able to persevere with it. The HRT may also be contributing to the way you feel. Please see your consultant or GP if you can.

in reply to

Thank you

Thank you

What was your out come? I no we are all different and everyone is effected in different ways but it's good to hear someone else's journey

Zoehman82 profile image
Zoehman82

I had my first injection on Monday, and picked up prescription for HRT today. I am nervous to see how I will be effected.

I am currently undiagnosed and awaiting lap, but gynae said to try this course of action as it should help with my current symptoms, whilst I await the diagnostic surgery.

( I had mirena coil removed a few weeks ago when I saw a new gynae for a second opinion, I felt the coil had made my symptoms far worse rather than better.)

I will be interested to see how you get on over the next weeks and months.

I hope you feel better soon x

in reply to Zoehman82

What a shame, I had my first lap 5 years ago and my second lap back in July last year, inbetween them thinking I had colitis when it was endo on my bowel, bladder and ovaries :(. After my second lap pain returned and I was back seeing the specialist, take 1 year to be exact for it to get so bad I took myself to A&E, had a 3 day stay and my out come was endo still so they put me on the injection with HRT straight away.

My sideeffects have been hot flushes, sickness, blinding headaches and 2 large bleeds with bouts of diarrhoea.

Last straw was the blinding headache I had last night, seeing my doctor today to see if this is all part of the process.

Zoehman82 profile image
Zoehman82 in reply to

I really hope you get some relief. I was worried I would be swapping one load of problems for a while load of new ones. But willing to try. I just got an appointment to go for an MRI on Friday next week. So I will be interested to see if there is anything to see. Having an injection of dye too. 😬

I shall keep following Your post I really hope things settle down quickly for you xx

in reply to Zoehman82

Thank you and that's good about your appointment, I haven't had an MRI ever for endo, I have had scans and they went straight in to the op, interesting to hear different people's diagnosis. I am at the Royal Edinburgh hospital that have the endometriosis clinic so we are very lucky that there is more understanding of this disease x

Zoehman82 profile image
Zoehman82 in reply to

I asked for a second opinion as the first gynae I saw basically told me to have a coil and I would be fine, if I had endo it really couldn't be that bad!!

I had the coil for 7 months and I just progressively got worse and continued to have periods, the only difference was I no longer bleed after having sex.

So not content with how I had been treated I asked my gp to refer me to someone different. She has been super and I got an appointment with a gynae that head local specialist centre for endo.

He was super nice removed my coil, physically examined me, sent me for bloods, explained about injections and Add back therapy. Put me in a pooled waiting list as his lists exceeds the time frame. He organised an ultrasound as he was concerned I may have a small umbilical hernia and the MRI so he can get a detailed look at what is going on. Ultra sound and MRI in the next few weeks. I got my injections sorted within a week of seeing him.

I am 33 and suffered my entire adult life so glad to finally be listened to. Xx

in reply to Zoehman82

Ye I here you my lovely, I'm 37 and I too have suffered all my life, I also have fibromyalgia which is fine I manage it but when flares so does the other, very frustrating. Good luck on your MRI and keep me posted on how you go x

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