Ivf on hold due to kidney issues from endometriosis

I posted earlier about the endometriosis that was detected on my ureter during my mri scan unfortunately we visited the urologist today and I'm going to need two operations.

One to put a stent in and open up the ureter and one to remove the endometriosis around the uretur. So ivf round three which was potentially going to be cancelled anyway due to adhesions on both ovaries is now on hold again while I wait for Endometriosis treatment. I know my health comes first I'm just feeling very very frustrated in what is turning into such a long and difficult journey which appears to have no ending! I know lots of ladies on here are in the same boat so will understand when I have a little moan how frustrating this is....just want to be a mummy!!

10 Replies

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  • Gosh so sorry to hear that - how frustrating but you have to get that sorted first annoyingly. Until I was diagnosed with endo a few years ago when we were struggling to get pregnant I knew so little about it but now i know just how awful it can be...hope the hospital get on with treating you quickly so you can get on with round 3 - wishing you all the best x

  • Thankyou I have been lucky my consultant secretary rang me after the appointment and they have squeezed me in for the first op on the 25th April. I know it's a horrible disease isn't it. It can affect so many different parts of the body I think people sometimes think it's only the uterus don't they xxx

  • Good luck with everything. I'm glad you're getting your surgery. Speaking as someone who is about to lose a kidney due to ureteral endometriosis I'm glad they've hopefully caught yours in time to save your kidney.

    I too have to put my ivf on hold as I'm awaiting surgery in May for my endo. It's likely they're gonna take my kidney and ureter out this time.

    Again good luck. Take care x

  • Aww I'm so sorry hellsbells what a nasty disease endometriosis is I hope your operation goes OK aswell do you know when it is. I'm praying they have caught mine in good time aswell. My consultant today was brilliant. It's just frustrating and horrible isn't it xxxx

  • My disease was silent until my kidney was damaged beyond repair. I'm hoping the surgery will be May sometime but waiting an appointment at the moment to discuss the plan. There's a possibility I'll need 2 surgeries as I have a lot of endo left that a general gynae didn't touch when I had my first lap last year.

    I hate endometriosis I feel some days it's ruining my life.

    You're very fortunate they're doing the surgery so promptly. Have you had a scan to check your kidney function?

  • I'm so sorry to hear that. I know they wouldn't touch a lot of mine I have a frozen pelvis and it's covering both ovaries. I had an mri but he said il also get an appointment for another one before my op that will assess the kidney function with a blue dye? It's horrible isn't it xxx

  • I had a renogram to check the kidney function. My left was only at 9% and after 3 months with a stent in it only improved to 14%.

    They tell me my right kidney is fine. Just sat waiting for the next step now.

    Is your kidney hydronephrotic (swollen)?

    It most definitely is horrible I agree with you x

  • It must be the renogra ive got to have. Is that with the dye? Yes it was swollen on the mri and that was how they described it? Did they just put the stent in then? They didn't remove the endometriosis that was causing the blockage xxx

  • The renogram uses radioactive substance and a gamma camera to measure the kidneys uptake and excretion of the radioactive injection.

    The cause of the blockage to my ureter was unknown but they suspected endometriosis. My surgery last year was to diagnose it, I also lost me left ovary and tube coz of endo.

    Due to the endo being around my ureter and the fact my kidney was non functioning there was no urgency to remove it. I have now however had a very acute flare up of my endo following a miscarriage and a scan has shown the endo has grown and my kidney and ureter are growing in size, resulting in infection also.

    Tbh I've had enough now and just want the surgery doing so I can get on with trying for another baby.

    Good luck with the renogram. As least you don't have long to wait x

  • Sorry to hear this but hope time flies until 25th and all goes well x

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