So down and fed up with lack of help :( support for a newbie?

Hi all,

I've come to you guys as I feel I have no place to turn re:my endometriosis. I will try to cut a long story short..I got diagnosed with endometrosis and PCOS in 2008. Following a laparoscopy to remove patches from uterus, I felt as though there was much improvement with the size of my periods and pain. Then come to 2012 I am in pain 24/7, but agony when on my period which is almost debilitating with the heavy flow, then the rectal bleeding occurred and sometimes leakage from my back passage (I'm sorry, I'm so embarrassed even typing this). I've been off work here and there every few months for a week or so at a time. (I'm a scrub nurse so it's hard to stand at an operating table for 6 hours in agony and bleeding thru my scrubs). Fast forward to jan this year another laparoscopy, they found more endometriosis which they removed. But 2 days after my discharge from hospital I received a voicemail "I'm a doctor from the hospital could you please get intouch with your consultants secretary first thing Monday" naturally I was worried all weekend with no one to speak to. When I did get in touch after a long weekend! They told me once I've recovered from the op I would need to have another to removed extensive endometrial deposits on my bowel, which are attaching my bowel to the abdominal wall, and more attaching my uterosacral ligament to my bowel and also my rectum is pulled on one side.....9 months later I'm still waiting! Ct scans, have confirmed this! Gynae consultants passing me to colorectal and back again. Nothing is progressing and I desperately want to start a family. Work are very unsympathetic and I feel my job is in jeopardy, my relationship strained. I just don't know what to do anymore. I'm sorry to sound so desperate and I know there's people worse out there..just have no place to turn.

Yours hopefully


4 Replies

  • The leaking back passage issue is certainly a very annoying aspect of bowel endo. i have it too. And Bladder endo...but at least that bleeding just turns my wee pink but it stays inside.

    I have a mirena in to stop my period bleeds, but the bowel endo is still active, so I wear a sanitary towel further back to hopefully catch any leaks when it is active.

    It may now be time to speak to your GP and get referred to one of the accredited endocentres, where specialst endo colorectal surgeons are on the team specifically to tack the type of endo invasion of the bowel that you have.

    The list of the endo centres is

    Otherwise you are stuck between gynaecologists who are not experts on the bowel, and colorectal surgeons who are not clued up on endo surgery.

    So getting referred to one of the endo centres should give you access to expert endo colorectal surgical help.

    I am not yet ready to go through with bowel surgery myself. I had an open laparotomy op a couple of years back followed by zoladex for endo, and was told after that I did have endo on bladder and bowel and the bladder and bowel were stuck together in the gap between the two halves of a bicornuate uterus.. So not going to be a straight forward bowel op for me when it does occur..

    I am coping ...most of the time... and know that the bowel op is something i will probably have to get to eventually but it isn't for me just yet.

    I struggle with energy to stand up for more than 1 hour..certainly couldn't manage 6hrs like you have to.

    I don't know how it works in hosp, but might it be worth asking the human rescource manager to relocate you so a more sedentary post untill you have had and recovered from the surgery.

    1st step find out your nearest endo centre and write down the details. Then speak to your GP to get erefferd to them. If your GP is reluctant, then it is probably worth booking a private consultation initially to discuss your case with them, and hopefully if they agree to take you ion, it will be as an NHS patient. Many ladies have gone down this route if they have not been able to get their GP to refer them for whatever reason.

    At the moment you are being passed from pillar to post because they don't have the right people to operate on you, so you need to push in the right direction to get things done.

    I wish you every success.

    Here are some graphic websites for you to read through which might be of interest:

    The newNHS protocol starting 01 Oct this year !!!!...looks great news..if only it would be like that. has illustrations

  • This sounds awful ;( I'm just replying to say that I'm sending massive get well soon hugs and hope you find the help you need!

    I went to my private consultant off my own back and they transferred me on to NHS so I think what Impatient is saying about the endo centres is really good advice!

    All the best, I really hope you get it sorted ASAP! Xxxx

  • Just an addition to Impatient's excellent advice.... if your GP is in any way reluctant to refer you (though hopefully they can see your diagnosis and sort things out for you!) try googling NHS Choose and Book. You can Choose and Book your specialist in the UK which is great news for getting sent to a proper Endo Centre.


  • Thank you so much for your advice and support. I feel I've been going around in circles. However due to your replies I feel a little more positive today :)

    Very much appreciated ill let you know how I get on :) many thanks again xxxx

    Links are fab impatient :) thank u

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