Endometriosis UK
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Mixed Emotions

Went for my first visit at a specialist centre (4.5 hours from home) where they have agreed to do surgery on my uterer and bowel, however since I have had previous surgery there is less chance that they will be able to remove all the endo which has made me feel quite angry and sad. My local gynae had to stop after 5 hours of surgery as he went into my bowel and didn't have the expertise to continue. I am concerned about my kidney as this has been dilated for 18 months now and on the transvaginal scan showed my ureter was dilated to 1cm - the nurse had never been able to see a ureter on the scan before and it was so painful (still hurts now). I am being sent for a kidney function scan - has anyone had one of these? so I'm glad I will get it sorted but there is a bed shortage so no idea of timescale at all which is adding to my frustration.

2 Replies

Hey windmill, I have had CT scans and renograms to check my renal function and also have signs of hydronephrosis. Am coping with it ok, minor flank pain cyclically, so no surgical action planned so far ( I think they aren't sure what to do, as they aren't sure if it is caused by endo or the fact my ureter was damaged getting my daughter out during a c-section 2 years ago. ) I share your frustration, and anticipate that I will need to go for at least the bowel surgery in the future but am holding off as far a possible, at least until I feel I have an experienced surgical team who know what they are doing! Its such a tense time when you embark on the waiting list, life kinda goes on hold doesn't it? - I hope you get sorted soon, and the renograms /ct scans are a walk in the park, so don't worry about having these, they are easy compared to what you are probably going through the rest of the time! Stay strong x

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Thanks, good to know that the scans are ok. The team seem really good and thorough so I'm pleased with that. so different having a whole team rather than seeing a single clinician. they were very knowledgeable.


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