Endometriosis and kidneys

Hi everyone...just was hospitalized for 3 days due to kidney infection. I have had a history of stones but I have monthly infections that are more intense and more frequent and every time i get checked there are no stones and they send me home. I finally found an ER doc that said he thinks it may be due to my endo ....but the admitting doctor (who was awoman!!!) Had no clue and said nothing showed up on ctscan and all other tests so nothing they can do. Went to urologist immediately after being discharged from hospital today and they said same until I just had enough and told them its more than kidney infections and if it was possible that endo is playing a part in all this!?!? They scheduled a contrast ctscan and cystoscopy for a few weeks from now and calling my obgyn tomorrow. After reading all the comments i want everyone to start going to the extreme now....had 2 laps years ago so maybe time for another. Anyway just seeing what others are doing outside the US bc the docs here just treat symptoms and send you home.

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  • Hi, I had this exact problem 4 years ago!! Admitted to a&be in severe pain every month for 6 months. Kidney specialist was convinced it was endo. Basically they discovered that an artery was wrapped around my kidney tract, I had been born this way apparently and it had never caused a problem until endo. Turns out every month the growing/swelling endo was pushing against my kidney causing the artery to constrict the kidney tract which was then causing infection as the kidney couldn't drain. They operated to relocate the Tracy. 7 hour op performed by a robot!! The doc didn't see any endo around the tract but said it must be around the back of the kidney or above. However the op worked &I no more infections!!! Still got endo though aching swollen pain in upper left flank and hip two weeks out of every 4 but nothing like the kidney pain. That is horrendous. Good luck to you xxx

  • Interesting!! This artery issue didnt show up on any tests??? I've had multiple ct scans and multiple sonograms (internal and external) and they see NOTHING. All the docs tell me if it's endo they wont be able to see it unless they do lap but that's where they stop....no one wants to do the surgery to confirm everything. I've had 2 previous laps with endo confirmed in the same place so it doesnt make sense to me.

  • Hi Natasha, it showed up on a scan (can't remember which) but no-one thought anything of it until a specialist queried whether I could have endo as it wouldn't ordinarily cause a problem but because I was ending up in hospital the same time every month, the kidney specialist started thinking endo. Then as they couldn't see any endo on any scans they looked at why could be causing the infections and realised that the swelling/growth every month must have been causing the constriction of the kidney tract or causing the artery to swell up. The doc was really surprised they didn't find endo around the kidney tract but as I still get pain in that area but no infections, he said it must be located a bit higher behind my kidney. The op sorted my infections (4 years on and no further incidents) but I still have endo pain. My gynaecologist said they wouldn't investigate outside of the pelvic area and that I would have to go back to my doctor to start a new investigation around my flank and hip areas (where I get pain). I have meant to do this but I have been just coping with pain relief and exercise tbh x

  • Ok wow i have noticed the same pattern with my kidney and blatter infections that's why I have been persistent now. And reading all of this makes me more confident of this...just need to find the right doctor. Thank you so much for your insight!

  • I hope you get some answers soon. I have found s few people on here with Endo complications with their kidneys. I have had it confirmed through ultrasound scan of kidneys followed by MRI scan. My consultant asked for these when I had told him of some new pain symptoms I had been getting higher up in my back and also a regular over 40s heslthcheck renal function blood test that had come back abnormal, which rang alarm bells. You know your own body. You just have to keep going back and shouting and asking questions. Wish you good luck x

  • This is really interesting to read! I just had my second lap done 3 weeks ago and after surgery I ended up going back into hospital a couple of days afterwards as I had a bad kidney infection too! This has been my third kidney infection in a year so the doctors now want to investigate further! I didn't realise it could be linked to endo! I have stage 4 endo with the majority around my rectum I also get terrible lower and middle back pain and I also have adenmyosis!

    Hope you are ok! Keep us posted on the results! Infections every month sound horrific you poor thing!

    Xx

  • Ugh...so sorry! Hang in there!!! My original diagnosis was endo all over my ovary and some on my uterus....causing cysts and rupturing. Second surgery was removal of my appendix because my endo had destroyed it. This stuff can be anywhere! Ive been watching surgeries on endo just to see why this stuff is so hard to find and so informative when you see it. Anyway hang in there!! Keep us posted!!!

  • If you have kidney endo you all should be under the care of a bsge specialist centre, if you are not please get a refferal to one asap,

    Xx

  • What's a bsge specialist? Im currently seeing a urologist, obgyn, and general practioner. Thanks!

  • Where abouts do you live?

  • New York...right outside NYC. US medicine sucks that's why I'm looking elsewhere for answers! Lol

  • Thank you all for your comments and feedback! I've been researching all day with all this direction just to be more informed when I get through all my appointments. Thank you xoxox

  • Hi Natasha27 ..i had partial hysterectomy last may 2015 due to adenomyosis & endo.i thought that solved the problem but on aug.same year i was rushed in e.r due to severe pain (w/high fever) on my left side.after several tests(ct scan,m.r.i) they found out that my left kidney was dilated& to keep my story short they have my left kidney removed.during the operation they found that there is alot of adhesions in the sorrounding of my kidney. Two weeks back, i was rushed to E.R again this time coz i was vomiting for 48hrs assctd with severe stomach pain..after several tests they find out that the adhesions was in my intestines.ofcourse the culprit was my endo and i was so dissapointed coz i just had two major operations last yr.and now a new problem has arised.today i just received the result of my CA125 and its quite high (365) just waiting for my OB to come back frm vacation & see what we will do next.im hoping & praying that my endo will stop deterriorating my health so i can atleast feel normal. My advise is for you to make sure you get a good doctor who knows your case very well and see every single details of your case. Hope things will go well with you.

  • First of all I'm so sorry! There are no words to describe what you have/are going through. I hope there is light at the end of the tunnel. I am waiting for my doc to return from vacation which is today. My fear is that he isn't aggressive enough and I end up losing major organs to endo. I hate this disease and can't believe there aren't more doctors specializing in the treatment for it. I'm finding no one wants to touch this bc they don't know enough about it here. Anyway, just know you have a lot of supporters behind you and praying for you!!!

    Xxx

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