2nd course of decapetyl

Hi all! Hope everyone is doing ok. I am struggling a bit with pain the past mth. I had an laperotomy last year that diagnosed me with stage 4 endo, with my uterus and bowel fused together. I still had lots of pain aftef the surgery so was put on 6mth of decapetyl injections. Ive been off these but taking cerazette to stop my periods for last 6 mths but in the last month ive been in alot of pain again, feeling drained and just not myself. I am waiting on an appointment coming through for an endo clinic. I was considering another 6 mths course of decapetyl as i actually felt normal on it. Has anyone else had a few courses of this? Im scared of the long term effects! Any advise would be appreciated! X

[Sunsh1n3]

Hi I have been on the injection for 2 years had a short break and will now be back on long term until I reach the menopause. The only long term effect I have been made aware off is bone density loss. Which there are medications for hrt or combined pill for example. Hope this helps.

[Hidden in reply to Sunsh1n3]

Thanks i took the hrt previously so i would be taking that again. I dont want to be on them forever as i would like to have a child eventually! Just finding it hard at the moment dealing with the pain!

[Sunsh1n3 in reply to Hidden]

I was told 2 years is the normal length of time but I am an exceptional case! I lived with the pain for around 10years before adhesions then endeo was diagnosed and for me only the injections have helped. But I am told being pregnant also stops the pain ,And changing my diet. My bowel womb etc are all fused together so eating easily digested food has helped and also helped when it passes out the other end! I wish I could recommend something to help with the pain I have tried most painkillers with no real results hot water bottle can give some comfort but still doesn't cure the pain. I hope knowing others are in the same situation helps a little.

[AkiBoo in reply to Sunsh1n3]

Hi, I am on the injection, just had 3rd monthly one, too. Just wondering how long do you expect to have it for, Sunsh1n3?

I am 44 and hoping to have menopause soon but also thinking of radical surgery as am afraid of things getting worse than now.

[Sunsh1n3 in reply to AkiBoo]

Hi I was on for 2 years on the monthly then had ovary removed. They now plan to have me on it until I reach menopause so hopefully no more than 5 years. I have had my first 3 monthly injection so I don't have to see the nurse every month. It feels the same getting it no worse than monthly one but for the first week I was v emotional!radical surgery is too high risk for me unless it impacts more on my day to day life and apparently it can't 100%cure it. Also adhesions may form so I would say read up on all the risks and side effects before committing to surgery. Abdominal surgery has a higher risk for adhesions forming. Less chance with keyhole but having had open and keyhole surgery both have left me with the adhesions forming. (Scar tissue which sticks to other organs a bit like endo. Hope this helps.

[AkiBoo in reply to Sunsh1n3]

Thank you very much, Sunsh1n3!