Anyone ever had endo on ureters or near k... - Endometriosis UK

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Anyone ever had endo on ureters or near kidneys? Really struggling just now

Scottoe
Scottoe

Really struggling with pain over my kidney area for the last 2 months. Been treated for a kidney infection and now on my 4th lot of antibiotics in that time. One urine sample came back in that time growing something (one wasn’t sent as too late in the day) then another has just come back clear, despite having all the symptoms with fever etc. Urine is full of microscopic blood as well and not period related

Have had pelvic pain on and off for about 18 months so already waiting on laparoscopy but no idea when this is gonna be.

Basically has anyone ever had these symptoms of kidney issues and been diagnosed with endo of their urinary system? I’m waiting on an mri of kidneys and pelvic area as well as other blood tests to be done too.

Sorry for the long post, just feeling rubbish at the moment and looking for some advice 🤞🤞

10 Replies
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Majority of mine came back clear, but a couple of infections and at one time they thought kidney infection. This year discovered on MRI the uterus is pressing on the bladder, but I don't know if that's just the uterus, a fibroid or stuck with endo. Hopefully I may find this out on Friday. I've had blood show regularly in the urine tests and end up with blood on tissue if I've been active, i.e. moving around, bit of cleaning, nothing like major exercise.

I don't know if this helps. Its generally very unpleasant though.

Hello, I can confirm I have recently had a nodule of endometriosis removed from my ureter and I had to have my ureter reconstructed as a result. The endo was affecting my kidney function and I had to have bilateral nephrostomies for a few months to give my kidneys a break xx

Scottoe
Scottoe in reply to Megandmog

Can i ask what the symptoms of endo on your ureter was? Did blood tests show your kidney function was reduced? I’ve said to my GP I feel like there’s something wrong in my side/over that kidney xx

To be honest I didn’t have any symptoms of it in my kidney until I had to go for an mri scan and they done a blood test beforehand which showed my creatinine (kidney function) was too high to have the dye out through. It was something like 153 when it should’ve been like 50 xx

Scottoe
Scottoe in reply to Megandmog

Ah ok. Maybe I’m clutching at straws and thinking everything is related. Did the mri show up that there was endo on the ureter? xx

Megandmog
Megandmog in reply to Scottoe

Not really. The mri was for something else, it was to see if a cyst on my ovary was an endometrioma or not x

When my laparoscopy was done they found endo on one of my ureters. I was peeing a lot (6+ times a night) and had horrid pain. I also had some removed near my bladder.

These didn't show up on my scan but I wasn't surprised when they found them.

Possibly a bit leftfield but I had a suspected kidney infection (pain in that area, and terrifying bouts of fever), my urine tested at GP suggested leukocytes (or whatever it is the dipstick tests for) but nothing cultured from hospital. Blood tests showed I had an infection. But no urgency, frequency or pain on urination. UTI antibiotucs did improve symptoms, but symptoms returned after stopping. I paid for a private ultrasound of pelvis and kidneys (NHS wait too long as I was quite ill at this point) which showed kidneys were fine but that I had a large tubo-ovarian abscess! Sent to A&E and prescribed pelvic inflammatory disease antibiotics which worked, as long as I kept taking them. This was the start of my endometriosis journey - 2 months later had a laproscopy nominally to remove the infected tube but they unexpectedly found a large endometrioma on that ovary (blood within the endometrioma is an idea medium for bacteria to grow, so consultant thinks its possible that the endometrioma lead to the abscess). The leukocytes they found in urine could have been due to cross-contamination from vagina.

Probably more likely you have endo on your urinary system, but just thought I'd throw my experience out there in case anything seems familiar. I think an ultrasound might give you the answers - mine was with ultrasound direct who have clinics all over the country.

I kept having pain in my kidney & groin area ongoing for approx 7 months and Dr kept telling me I had reoccurring UTIs, tried to convince me I then had an STD when urine culture came back normal, had STD tests done three time’s and kept coming back negative; then kept telling me that I had a Persistent kidney infection and that I needed to drink more water / cranberry juice to flush it out and then GP fixated and tried to convince me that my endo has gotten worse. But I wasn’t getting normal kidney infection symptoms and the pain felt different from the usual endo pain etc

Kept getting sudden acute episodes of bad left sided pelvic & back pain. Had an MRI last month after demanding to be referred for investigations and turns out I’ve been walking around with a Left Posterolater Annular tear with mild posterior buldge at my L5- S1 joint in my spine; the buldge has been poking a highly sensitive nerve which is responsible for pain in the pelvis.

MRI is definitely the best route to go down as will definitely give you an idea as to what’s causing you grief, I hope it is able to provide you with an answer on what’s causing your pain, makes you feel better when you know what’s going on within your body (made me feel better anyway - everyone’s different) as can then make a treatment plan with hospital consultant Xx

Great to know your mri told the problem.

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