Decapeptyl and pain

[Snowwhite2207]

Hi,I am currently awaiting total hysterectomy with ovarian preservation. Am 48 years old,no children.Am on Decapeptyl 3 month injection to shrink my 9 fibroids. At least a year an half ago I had 9 of them,the size of small oranges 6,5cm. They are everywhere. One sits on my bladder. Now not sure as was told my womb was so large with my fibroids,it was inoperable with robotic laparoscopy so shrinking it down. Also shrinking it to ease the pain and anemia. My stomach is damaged from years of taking iron and healing erosions,so can't take any pain relief only Panadol. I recieved my first Decapeptyl 9 weeks ago but am in so much pain. I generally feel fine,other than constant headache,insomnia and extreme fatique and daily bouts of period pain ( all since Decapeptyl ) - even though I don't have any actual period as a result of Decapeptyl. Had my last period for first two weeks after the injection and now my periods are gone,just pain and bloating comes every day. Usually at lunch time or later on towards evening. Did anyone else experienced this? The pain can be quiet bad,it feels like it is bad stomach pain, can't eat much... I can't wait for a surgery and please God get a better quality of life 🙏. I can feel so unwell,bloated and painful. Not sure if it is my womb or my intestines and stomach or all at this stage. I am grateful I got the injection,as I would be so much worse but still feel it is not much different sometimes...

[pelvicpain123]

Hi Snowwhite2207. I don't have any advice, I just wanted to send you a virtual hug 💔. I hope someone else is able to respond with some help xx

[Snowwhite2207 in reply to pelvicpain123]

Thank you so much for your reply. I needed that ❤️ Hope you are ok. I can report I am 10 days after my robotic laparoscopic totalhysterectomy with ovarian preservation and feel fab. It is the best thing I did! Yes,I do have pain in my incisions,but this will heal. BUT >>> All of my symptoms disappeared immediately after surgery. Everything! I can eat, no more anxiety,no more pelvic pressure,no more tail bone pain , no more pain radiating to my kness and buttocks, no more constant period pain, womb pain. My womb was 10 x times its normal size and I had also endometriosis!!! Never knew I had endo, but that explains my suffering all my life during periods and now all the time - to the point I had to leave the job. Not sure why you are here on this forum pelvicpain123,but dont despair. If you ever need to have hysterectomy, don't be afraid. It is the best thing I did for my health and wellbeing. I can't wait to get better each day and go for a 6 weeks check up. And hope my endo will never return!!!🙏

[pelvicpain123 in reply to Snowwhite2207]

That is wonderful 😊. I am so glad that the procedure worked for you and that your symptoms disappeared. I hope that you continue to rest and heal.

I am recently diagnosed with endometriosis and waiting to hear from a specialist.

It is so nice to hear positive stories, so thanks for letting us know.

Ps. I have just started taking tumeric tablets as I have a lot of inflammation internally. This might be something for you to look into and speak to your team about in the future xx🫶

[Snowwhite2207 in reply to pelvicpain123]

Hi,thanks for your reply. Wow,that is wonderful piece of information, I will definitely ask about turmeric tablets. Don't know much about endometriosis either - was literally diagnosed after my surgery 10 days ago. This is something I will be addressing with my consultant on my post op check up.

I hope you are not in too much pain. And I also hope that your endometriosis will stay contained and treated and that you will be free of it one day. Sending you a virtual hug too. And thank you for a support xx

[LawsTra]

HI there, I am away to get my 1st Decapeptyl monthly injection tomorrow. From what I was told, bloating is quite common side effect of these injections. Also I am surprised that they did not offer you HRT & Mirena coil to help with side effects of the injection, unless you already have this.

With regard to pain relief, ask about suppositories as I use these and get great relief from them as I can no longer take naproxen by mouth.

If you are feeling so bad and the pain is not improving , i would suggest going back to them and telling them you feel you are not benefitting from this and see what alternatives there are.

good luck

[Snowwhite2207 in reply to LawsTra]

Hi Laws Tra, hope you are doing ok on Decapeptyl. I found it did help me a lot and now I am realising, my symptoms were really due to what was inside of me rather than from injection itself. Hope it will help you too.

I did reply to pelvicpain123 - please read it,as I hope it will offer you some comfort if you end up having hysterectomy. Thank you so much for your reply, I do appreciate it - but I am well now, 10 days post my robotic laparoscopic total hysterectomy with ovarian preservation and got immediate relief. The best thing I ever did. All my symptoms dissapeared. The pain post surgery is a small price to pay,for what I gained. Please mind yourself and good luck with your Decapaptyl. Are you waiting for a surgery? xx