Prostap

[Catmum]

I had excision surgery for deep infiltrating endometriosis in July that was not as successful as I had hoped.

I had my 2nd follow up yesterday and was told further surgery would be too risky (perforation of the bladder and bowel a possibility) Hormone therapy was strongly suggested, in fact it was that or nothing. I felt really pressurised.

I asked very clearly about side effects. I told the Senior Registrar repeatedly about my past history of depression. The only side effect that she was concerned about was the potential of osteoporosis. I was told repeatedly that the injection could be given there and then and made to feel like I was being an awkward patient for questioning the treatment.

In short, I had the prostap yesterday (the monthly dose) and sent on my way with no leaflet or information.

I woke up at 4am feeling like I had been run over. I have a headache and have vomited a few times. I am bleeding vaginally. I have had to ring in sick.

I have been on the NHS Choices site and looked up the possible side effects and they are extensive.

I feel really angry and upset. Like I have been conned and dismissed.

Would anyone be able to tell me how long I am likely to feel so rough?

Thanks

[Laura_T]

I felt rough for a while. Side effects weren’t great but stopped the bleeding and most pains. You can’t be on the injection for longer than 6 months apparently as it can thin the bones. It’s a strong drug. Give it 2 months to fully work x

[Catmum in reply to Laura_T]

Thanks for your response. If I can tolerate it for this month I will consider a further dose 👍

[Laura_T in reply to Catmum]

Honestly if you can tolerate it for a few more months you will be ok. It helps so much. It’s after the injections wear off and the terrible period comes. I honestly thought I was going to die. Wish you luck x

[Cleo1986]

Have they prescribed you any tibolone or addback to go with it? That helps with the side effects but takes about 6 weeks to kick in. I honestly felt that helped the side effects and actually it did massively reduce my pain until my op. I’m

Hoping you’re already at a bsge centre with that complicated endo... make sure you are if not. I just had some Excision surgery for my stage 3 endo that was RV and through my vaginal wall and on my bowel with my uterus and ovaries fixed and they managed to excise it all at kings. Wishing you all the best of luck x

[Catmum in reply to Cleo1986]

Hi. No they haven't prescribed anything else. I am with an endometriosis specialist and she is great, but I saw one of her juniors this time.

Hope your recovery goes well. Thanks for replying x

[Cleo1986]

Okay. Well I really found the add back helped so I would ask for that if you can...that’s good that they are a specialist, as long as you are in one of these centres I’m sure they will be doing all they can. Hope It gets better for you

[Catmum in reply to Cleo1986]

Thanks, will suggest it at my next appointment- it's only a month away so not long to wait.