Taken off hospital list - what to do??

Hi everyone! New to all this - feeling a bit isolated and not sure what to do next! I was finally diagnosed with endometriosis, bowel adhesions and pelvic congeston syndrome after a laparoscopy last year. The surgeon told me all this whilst I was just coming round from anaesthetic so was a bit hard to take everything in! I got a letter c. 5 weeks later telling me to go to my GP practice for Zoladex or Prostap injections. I wanted to discuss this with someone - find out why / side-effects / future etc. but before I could see my GP the hospital contacted me to say that they have taken me off their list as I have not gone ahead with their plan. So now I have no input from gynae services, and don't really know what to do! I was relieved in a way to get the diagnosis ( I knew something was wrong - despite years of being told by GPs that everything was fine and I was just a worrier!), but don't really know what to do next. I'm not deliberately ignoring the hospital's advice - just wanted to discuss my options. I have never seen the same GP twice - so don't really have a link there either. Does everyone else have a consultant? Should I be receiving some input from someone? Are the injections the best thing to do? Just a bit worried that things will be getting worse if I just leave things as they are without any follow-up. Thanks for reading! xx

4 Replies

  • Hello :)

    Sorry to hear that you are having a tough time. I refused the injections after my lap as they are serious drugs with awful side effects and personally wasn't for me. My consultant respected my decision and gave me more options. I eventually opted for the mirena coil and excision surgery.

    I would go back to your GP and ask to be referred to a specialist endo centre as I don't believe you are being treated properly.

    Best of luck! Xx

  • I don't have a consultant. The surgeons are there for surgery - everything else is done through the GP. So it is normal for you to be removed from a consultants list if there is nothing more that they can do for you surgically - either because they removed all existing endo or that the surgical expertise necessary is beyond their training which is often the case.

    If you needed follow up surgery because the op was simply a diagnostic and no removal of the existing endo was done, then speak to your GP about referring you to an endo specialist surgeon or an accredited endo centre where the more complex surgery can take place. You do not have to have GnRH drug treatments and not having them should not alter in any way your right to have existing endo removed.

    the accredited endo centres are on


    If you had the surgery and the existing endo was removed then next step is normally either try for a pregnancy or reduce or stop your periods if you are not ready for baby making. In which case speak to your GP about the various methods available to you for controlling or stopping periods. Research the various types online too.

    And then your GP can arrange which ever method you want to try 1st.

    If one doesn't suit you then there are many other variants to try and you could work your way through several before finding one that suits you with the least side effects and inconvenience.

    You can even go back to GnRH and try that at a later date if you get that desperate to try anything else. Personally I wouldn't bother with it EVER again, but it's an option.

    Definitely discuss this with your GP, but it is normal to be taken off a consultants list if they have done what they needed to do or can do no more. if you need their help again in the future then you re-apply through your GP.

  • Id go back to ur GP & asked to be eeferred to a gynea specialist. You need support & medical guidance on this.

    GP r wot they are General , a small amount of knowledge on a broad specrum of ailments thats y they referr on to a specialust.

    Also GP have told consultants to cut their consultancy list by thousands as it cost the GP everytime u see the consultant so have put pressure on the consultants to just referr u back to ur GP. Trust me the consultants are very concerned about this as they feel compromised & its not safe best practise!

    I work with in the NHS so i work with consultants every day .

    This is ur health & or wellbeing be abit tough and fight for what u need

  • Thank you all so much for your help and advice. I guess it's back to the GP for me! I do find it hard - result of feeling like a time waster after being told that I was worrying over nothing for years! I'll do some research first and get on with it though - you're right - it's my health and at the very least I need a conversation about options.

    Thanks again. xx

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