Endometriosis UK
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(UPDATE) Can I go against their advice?

Hi there,

So I had my lap last month which confirmed Stage 4 endometriosis.

My consultant said he wanted me to have another 3 months of Prostap straight after to allow things to calm down after the operation to excise etc.

I had my 1/3 the day I got discharged.

I really don't want 2/3 and 3/3.

As per, my migraines have returned. I really can't cope with these again. I know it's just the medicine working etc. But their as crippling as my endo pain was.

But also he advised that I can start trying for a baby once the 3m course has finished as he wants to let everything settle down first.

We would really like to start trying straight away, I had my period during my operation (started 2 days before) so him wanting everything to settle down before my period returns doesnt really make sense as I've already dealt with a 16 day period straight after my operation.

Do you think it's worth me emailing him to tell him that I wish to not have my 2nd and 3rd course.

The appointments haven't been made, I was to arrange those myself.

I just hate to think I've got 3 months of Prostap then god knows how long before it gets out of my system and then to wait for my periods to return (as it would have stopped them by the 3rd injection) before we can finally start trying.

I've been told it's going to be hard enough to conceive so I really don't want to prolong things.

What would you do?

In less than a year, if I go through with this 3m course I would of been on Prostap for 9m!!! That's much to long for my liking.

Other than that, all is good. Wounds have healed nicely, scars are super cute and barely noticable, still having the bowel pain when pooping though but after everything they did I guess it'll take time to settle as it hasn't been a month yet since my surgery.

UPDATE: 9th Jan 2017

I had a phone call from my specialists secretary today, she emailed me the wrong date he was back on the 7th not the 17th!

She said that he has said it's fine for me to stop the Prostap after one round and as soon as my period returns to normal (I'm guessing it has started to work as my period was due but hasn't come yet) then I can safely start trying to conceive.

I feel relieved that this has come from my consultant, I do feel anxious about TTC so soon after surgery after hearing other people's stories etc.

Only time will tell what the outcome will be.

Thanks for all your help again ❤️❤️❤️

11 Replies

Firstly you must be relieved to have a diagnosis and it must be very exciting the thought of ttc with the “issue” resolved.

I personally would go with the surgeons suggestion- obviously he must have a valid reason for wanting to suppress everything for a further three months- if prostap isn’t agreeing with you maybe contact his secretary and see if there is something else you can take.

My endometriosis was found last June and treated- I conceived a month later ( I was told I could try straight away) but I lost the baby at 4 and a half weeks. I’m not saying the loss was endo related because I will never know what caused the loss but in hindsight I wished I had a consultant telling me to wait a few months till my body had fully healed I wonder if things would’ve turned out differently if I had waited....

I am not telling the story to frighten you and I hope I haven’t done that and obviously I’m not implying that would happen to you.

I do know what it’s like to want a baby so desperately all ration thought goes out the window! Until this month I was still trying despite others advising it wasn’t a good idea- a scan detected some tissue that may need removing and my fertility specialist refereed me to a general gynaecologist who I’m seeing in a week and a half’s time. I can so relate to what you’re saying because I’m the same! The only thing that stopped me was I’m not ovulating anymore- so I need to get to the gynae.

But ultimately this is your decision and you must do whatever is right for you. Many women have conceived after surgery straight away and baby has been fine.

All the best with whatever you decide to do and I hope to hear happy news from you soon xoxo

1 like

Hi lovely,

Sorry it's taken me a while to reply. Thank you so much for you comments and advice.

I'm sorry to hear that, I guess you will never know but by reading what you said, I think I know which way I would think. I've been thinking about my situation a lot, I keep looking back at the photos they took of what my insides looked like after they did surgery, they look butchered, and I keep thinking how is it possible that a baby could even survive inside of there.

But I'm so torn, I really don't want to prolong it but then I don't think I could cope with the heartache of something happening if I did fall pregnant soon, as I would forever kick myself that I went against there advice etc.

Ughhh it's such a hard one! 😓


It's so heart rendingly difficult !! I've never had prostap but can relate to the feeling of not wanting to wait a moment longer. You know your body better than anyone - but those extra couple of months on treatment might make a huge difference in settling things down? Sorry I'm not much help. Thinking of you xxxx

1 like

Yes it is, it's such a hard decision, I know what my heart wants but I also know what my head is telling me makes much more sense!

I've emailed my consultant to tell him I would be grateful of a mini consultation via the phone or email back to either further suggest I go with his wishes or if it's safe for me to not continue the Prostap etc.

I got a swift response from the secretary saying he is on annual leave until 17.01.2018 which will be past my due date for the next Prostap anyways.

Thank you for your response ❤️ xx


A few words of advice.

1) Yes, you absolutely can refuse the treatment suggested. It is your body, and you do not have to do anything you don’t want to do. However...

2) I would go back to your consultant with your concerns. Explain how you feel about conceiving etc, and ask him for hard facts on why he thinks two more rounds of treatment will be beneficial.

Once you have this information, I feel like you’ll be able to make a more sound decision.


Hello lovely,

I've emailed him, he won't be back to work until 17.01.2018 (secretary emailed back) so I won't get a response until later around then.

So it's a waiting game at the moment until I hear his advice etc.


Hi there, I can totally relate as I am having my second lap next Friday ahead of ttc hopefully and have been on prostap the past three months. I found it really hard, feeling depressed, loss of libido and generally feeling rubbish... however after the first 6 weeks I did find my symptoms eased off (are you taking any HRT alongside?) and for me it was the right decision to reduce the risks of my surgery. I agree with the others that maybe talking to them about your worries and their rationale might help? But ultimately say no if you don’t feel it’s right, it’s your body! Good luck with ttc x


Hello ❤️

He did prescribe me HRT (I didn't have any with my first 6m) but this time around he did, as again I was confused as to why so I haven't taken the HRT.

I wish they would come and speak to you when you can think straight!! And not right after surgery.

I'm awaiting a reply from my consultant via email or phone call, but he won't be back from annual leave until 17th January.


I know, I felt so confused too! And hate that they speak to you straight after. I’m going to ask if I can record it on my phone this time around so I can listen back after and not feel so confused.

Re HRT - my consultant said they didn’t used to prescribe it due to worries it would not be as effective but apparently now it is okay to take alongside, and gets rid of some of the side effects. I’ve certainly notice my mood improves after about 6 weeks and the hot flushes and headaches too, which I noticed returned when I stopped taking it about a week ago!

Good luck x

1 like

Hey lovely, recording it is a very good idea, we recorded a few of my consultations so I could go home and listen to it and take proper notes instead of scribbles!


So I've updated my original post with what the consultant said. ❤️


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