Endometriosis on ureter

I have been to the doctor today who is concerned that endometriosis on my ureter is affecting my kidney functioning normally. He has reffered me on to a urologist for further assessment. I have just recently started ivf treatment again and I'm a bit confused as to what this means and what the treatment will be? I have stage IV endometriosis with a frozen pelvis. Any advice would be much appreciated. I feel like my head is spinning with it all xxx

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  • Your ureuter (I'm not sure if the spelling is different in Canada which is what I'm using) brings urine down from your kidneys to your bladder so that you can urinate to get rid go toxins.

    The kidneys filter out toxins from the blood, these toxins can be anything to excess vitamins and minerals (all except for heavy metals which aren't water soluble) to ammonia which is converted to urea in your liver.

    If your uretuer is blocked your kidneys can't filter out toxins since there's no where for them to exit your body from. So your kidney function becomes impaired beacuse toxins cannot excess your body properly, in extreme cases this can lead to sepsis if not taken care of. Dialysis is often used when the kidneys no longer work while you wait for a transplant.

    Even if you have 2 kidneys before one fails, your body will still use both of them even if ones function is impaired which can lead to the other having some difficulty.

    I'm just going from what I learnt in biology but I hope this help:)

    If you don't get something I'll try to explain it somemore.

  • Thanks hannah that's really interesting I can see why it's important I get it treated. Endometriosis is such a nasty disease xxxx

  • Hi I have stage 4 endo and after my last failed IVF in 2015, endo started to affect my kidney function. It went as low as 19% and I ended up having a nephrostomy so that my kidneys could drain properly. Basically I had two bags on my back to drain the urine as there was a blockage in my urether preventing urine passing into my bladder. A month later two stents were inserted into both my urether and I had regular blood tests to check on my kidney function. I had the stents for 3 months until my kidney function was around 74. The stents seemed to have extended my urether. It's been a year since the stents were removed and I am due to have a follow up with my urologist in 2 weeks. I have been on a progesterone only pill continuously to keep the endo at bay and I feel so much better. Hopefully once you get referred to a urologist they will test and monitor your kidneys function. It is very likely that you will need to have an ultrasound scan first but if that does not pick up any blockages caused by the endo you may need to either have a CT scan or MRI. If you have any questions please feel free to ask. Good luck x

  • Gosh that doesn't sound good Im pleased your on the road to recovery. At least I'm moving in the right direction with a urologist refferal. I've just had an mri scan I think it was that more than the surgery that prompted him to make the refferal. He said my urether is dilated xxxx

  • Yes it's really important they start monitoring your kidney function if there is any chance your ureter is being damaged by the Endo. Unfortunately I found out too late that my right kidney was severely damaged by the same thing. It was too late to treat. My right kidney only has about 7% function so effectively now only have one functioning kidney. You can live perfectly fine with one. Obviously better to save both though!! If it means putting your ivf off till a later date that's a decision you must make. But personally, having been through ivf z few times, I always felt I needed to be as well, physically and mentally, as possible to really give it the best shot possible. Good luck xx

  • Thankyou liverbird I'm sorry to hear your kidney is only functioning by 7%. Endometriosis is such a nasty disease. I'm glad I have got my refferal after looking at the posts on here hopefully it's been caught early enough to treat xxxx

  • No probs, let us know how you get on. There's not a huge amount of info online about Endo effecting the kidneys, but Iv certainly read about people having stents put in, as the other lady has shared, or in some cases being able to remove the Endo from the ureter. For me, they will be doing routine ultrasound scans to monitor my left kidney function as we need to make sure the Endo doesn't spread in that direction too! That would not be good. Good luck and let us know how you get on x

  • On your urethra or one of your ureters? Ureters are the tubes from your kidneys to your bladder, and the urethra the tube out from your bladder.

    I had endo wrapped around one ureter which was successfully removed, but due to ongoing issues caused by emergency surgery due to sepsis following hysterectomy, a urologist found that my left ureter was severely constricted poss due to historic endo damage and I had to have a stent. Since then my kidney function isn't good.

    Glad you're referred to a urologist, try to ask if you can see one that specialises in female urology. Good luck x

  • Apologies ureters I keep getting confused xxxx

  • No need to apologise!! I've been on a steep learning curve recently!

  • Haha as you can tell biology wasn't my best subject at school xx

  • Ditto!!! I just wish I'd not had to learn so much about my insides now!

  • Very true! X

  • I have endo on one of my ureters and have had three stents over the last 2 years, ultimately they're going to move one of the ureters from the left, over to the right side of my body.

  • Thanks Jull I'm guessing your under a urologist? Xx

  • Yes, gynaecologist, bowel surgeon and urologist, the whole lot lol

  • I'm under gynaecologist, bowel surgeon and apparently now urologist! Ha xxxx

  • Interested in what you're experiencing due to my current situation.

  • Il keep you informed xxx

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