Now totally confused!!!!!!!!!!!

I had my appointment today with consultant, told them i am still in pain even though on Prostap for 5 months and they have now informed me that the pain is a problem with my bowel which is in a bad way because of the endo so are now referring me to a bowel specialist...................and have now discharged me even though ive got really bad endo and have the chance of new cysts growing!!!!!!!!!!!!!!!!!

feel like crying i am so confused and emotional and dont know why theyve discharged me..............................any help would be so appreciated..............

Thanks ladies xxxxx

10 Replies

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  • Sorry to hear you are left feeling confused and I am also sorry to hear the endometriosis has now affected your bowel too. I am surprised to hear that the gynae department has discharged you. I would have thought they might want to keep you on their books at least until you've been seen and sorted by the colorectal surgeon. Did you go on your own to the appointment. I always make sure I have my partner or close friend joining me as sometimes I don't hear things properly or remember it all. Is there a way to double check this with the consultant or his secretary?

  • Thanks for the reply...........

    i was also suprised to hear it which is why i now feel like im going round the twist!

    My hubby came with me and was great asking questions and such but they were adamant the pain is bowel related and im to wait for an appointment with them!

  • I really don't understand the logic behind you being discharged by the gynaecologist. Definitely go back to your GP and express your worries!!!

    Remember it is fine to fight for yourself and your health. So don't give up and don't let go of it!!

  • If you have really bad endo then I don't understand why they've discharge you either. Have you had a lap recently? They can't tell you it's not endo pain when you have severe endo! That's just stupid! Even if it is your bowel, they said it's the endo causing it so it's gynea and colorectal, not one or the other. If anything the gynea should be working with the colorectal surely?

    I would go back to your GP and ask to see the letter from your gynea to the gp, Also ask why you have been discharged from gynea even though the problem is gynea related!

    Really sorry you're having such problems with this, the system is ridiculous, we are a whole person not unrelated bits stuck together and dr's need to realise they should work together on a problem that involves more than one part of the body.

    Good luck hun xx

  • Missteal.........thank you or your reply.........

    i had a lap in April.........had some adhesions cut away 2 chocolate cysts drained and told then that my endo has stuck everything down there including the bowel i know i totally dont understand it either the endo is to blame for my bowel!!

    i have an appointment with my gp on thursday to ask them to refer as well as the consultant told me their referral could take longer than a gp one!!.................i thought that going to a specialist womens hospital that my treatment would be sympathetic but how wrong was i???

    i feel so sorry for all of us who are going through this its like the invisible illness and we become invisible because of it...........

    Take care xxxx

  • Hmmm, surely they shouldn't of discharged you, I can see why your confused and I would be too! Even if they kept you as an outpatient and then send you to the bowel specialist would be better.

    I agree with being invisible but my advice would be, make your self visible, speak to your Gyne and find out why they have discharged you surely whilst still undergoing treatment with your endo eventhough it is causing problem with your bowel you still need to be under a gyne, what happens if you have to have another chocolate cyst drained whilst they are dealing with your bowel.

    Gyne need to get you back as an outpatient.

  • I am so sorry you are having trouble with your gyne, you should go back to either your doctors and tell them what has happened and see if you can get a second opinion or go back to your gynaes receptionist and ask them why they have now discharged you.

    If you ever need to talk give me a message.

    Kind Regards

    Emma-Jane

  • i would get re-referred if you can. ive had this several times and ive pushed to be re-referred and they have found more endo both times. at the end of the day only you know your body and because endo is not generally something they can see without cutting you open, they cannot be sure about if its back or not, so dont be afraid to tell them they are wrong. if your GP wont refer you back, then go to another one. also,it might be worth going to see the bowel specialist at the same time, just to rule out any other problems which may also have evolved alongside endo. its not impossible you have more than one problem. and by following what they want, whilst still pursuing the gynae route also, they will be more helpful as you can rule out what its not. i know its annoying but a lot of the time with endo it seems to be about ruling out treatment options, ruling out what its not etc. its like a guessing game it seems. anyways good luck! xxx

  • yes i agree with all the above go back to the GP and get it referred but still see the Bowel specialist to see what wrong with the bowel and i had that as well but Gynae didnt discharged me at all... i am still under them if i want to see them again which i have to see the GP first grrr... as my 6 months outpatient was up so i am not bothers as i am fed up too.... so i am so sorry that you are suffering that badly... but please tell the GP what had happened ok and they will write to them and ask them why or you can write to them too and i would and copy to the GP... you must be under the Gynae as you have Endo... hope you get better soon xx

  • Thank you all sooooooo much for your advice.............

    I have demanded a gp appointment and due there tomorrow and i am going to write to my consultant as advised and will let you all know how i get on

    Thank ou each and every one of you xxxxxx

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