It this the end of the road?!

I am glad that there is somebody else out there. I had the same thing, I have been seeing a consultant privately. I had me first lap in June 2014 endometriosis was found on bladder and bowel, which been treated. My GP refer me to the UCH endo clinic as my insurance won't cover endometriosis any more. As I start getting symptoms again, They have start formal process at work as I have so much time off work. So days I can't get out of bed during my period. I have been taking the pill i would like to come of it and try for kids but the symptoms terrible (I have period that last 7- 20day periods while on pill!)

I had another extremely painful ultrasound (6th one in the last year), which showed no endometriosis. I was not surprised as it never does. They made fill out a huge numbers of form. Then I saw a nurse who explained very well and gave me 4 opinions that consultant will go in more detail.

I got to see a consultant that week. The consultant did not take a history from me or examine me or even ask me where the pain is worst! He told me that there is no deep endometriosis on u/s and that there is nothing that they can do. He told me take two pills a day. I just can't believe that this all they can do for me. I don't know what I to do if the only treatment is the pill, I feel that should resign myself that I am going to have children and will lose me job in the progress. Has any one been though this? Have you end up having children?Apologies for the very, very long message. Thank you for listening. Xxxxx

5 Replies

oldestnewest
  • Hi there

    I'm in a similar situation although my consultants haven't abandoned me yet.

    first gynae I saw said my pain wasn't cyclical enough to be endo and ppl with endo don't describe burning pain. She told me to get a mirena at walk in centre and come back in 6 months. Anyway I thought that was bs so I had a private app and was listed for lap.

    During my lap they found endo on my bladder. Bladder endo is apparently rare. However I can assure you its extremely painful. I'm in pain daily and off work now. I'm on tramadol,amytryptaline amytryptaline naproxin and still experiencing pain.

    At my latest app I saw gynae no 3 who is sending me for an mri to check for adenomyosis. He said that the endo they found was small and doesn't correlate to the pain I'm having. (I also have excruciating kidney pain).

    They really can't just leave the endo there.if you have bladder endo they should be checking your kidney function as well as looking inside your bladder. I don't want to frighten you but ..there is something called silent kidney loss which can happen as well.

    In addition my GP said bowel endo can be ridiculously painful. I can't believe they just leaving it there. For me fertility is not a concern but if it is for you they should be more proactive. I didnt tell my docs that kids arent for me because I feel there won't be a sense of urgency in my treatment plan. My consultant said to me that further surgery is likely regardless of what they find on my mri.

    I found a medical paper about bladder endo which I'm going to take in to my docs when I see them again. I'll try find the link for you.

    Hugs

    Xx

  • google.co.uk/url?sa=t&sourc...

    That's the link for the paper on bladder endo.

  • Hi again,

    Please can you send the link it does not seem to be working.

    Thanks you so much.

  • Hey sorry about delay.

    Been a bit hectic lately..im now on morphine:( Been back on site these last few days.it seems I can't link that pdf..(stupid internet.or user error probably)but if you type clinical manifestation bladder endometriosis into Google there's a pdf from a site called ics. The pdf is labelled 719... 

    I know the endo UK site has a very basic leaflet as well, but not much on endo within the urinary tract.

    xxx

  • Thank you so much for your response. It is very helpful. Good luck. Xxx

You may also like...