Decapeptyl, what’s next?

[Mandyp]

Looking for peoples experience of the decapeptyl injection. I had my 1st 21/2/22 and my 2nd 20/5/22 I have also been in hrt I have 12 days left of that I have have been great no pain and actually been living my best life.

The past few days I’ve started to feel wee niggles if pain is this normal to start feeling pain asoon? Also I am not back at consultant till 24/10/22 will the “serious” pain come back as in 12 days I have nothing and I’m abit scared of not knowing what will happen any advise of experiences great appreciated xx

[Luc81]

Hi, decapeptyl was the worst thing for me. Side effects, weight gain, weird moods, it took me ages to go back to normal, I had pain anyway. They try to stop your ovulation to not produce anymore estrogen but the thing is endometriosis has its own estrogen, all these hormonal treatment for me are pointless. I'm sure some women have good experience with them. We are all different. The only thing that ever worked for me is surgery with great experienced endo and adeno especialist and good healthy diet. Wish you all the best

[Pureunicorn]

Hi Mandyp,

I was on decapeptyl for nearly 2 years as I was waiting for a hysterectomy, it was the best thing for me, I had it monthly as I hadn't been great with others things I had tried, I must admit after the 1st year as i got nearer to the time of my top up I started to feel the twinges coming and towards the end I was needed more of my pain meds. Is there a reason why u cant keep taking it? Are u waiting for surgery? Just know that being on the decapeptyl doesnt stop the endo from growing! My 4 hour surgery turned into 8 hours. Hope this has helped a bit, if I can help anymore just ask, good luck xx

[Mandyp in reply to Pureunicorn]

Thanks for your reply they told me I could only have it twice 🤷‍♀️ So I’ve had feb and then may. When I was at my go they read the letter from consultant which said I hadn’t to be put on pill etc between the injection wearing off, it would pain management until I was back at him in October. May I ask what surgery did you have was it a hysterectomy?

I just can’t believe it’s wearing off this quickly 😔 the thought of the constant pain again fills me with dread as I honestly have had an amazing few months. X

[Pureunicorn in reply to Mandyp]

I was on it for 2yrs, to start with it was great but as time went on I did have to take more painkillers but it was still better then without! This is what my surgeon said too! I had a full hysterectomy, they did want me to leave part of my left ovary but I said no! After my surgery my surgeon said that I made the right choice, I am a great believer that as women we know our own bodies and what we can/cant cope with or do!! If u really dont want or want something stick to ur guns and push for things, I had everything taken out even my cervix so no more smear tests either 😁, I'm 40 and I've not felt this great in a very long time, I know it's still early days. When I was on decapeptyl injections I was also taking codeine, naproxen, paracetamol and Morphine when it was really bad, it might be worth asking about some pain management, I know it's not great but its better then the pain and not being able to function or cope. Goodluck and feel free to ask me anything x