Kidney endo?

Hi, I hope somebody can help me? I have endo on my right side and I'm currently on the waiting list to have a hysterectomy and bladder prolapse repair for post ablation tubal sterilisation syndrome, but when I got my period on Tuesday I have been experiencing pains in my right kidney it feels like someone is in there constantly twanging an elastic band on it, I haven't got a infection I've been tested. Could the endo spread to my kidney? Has anybody else experienced anything like this? TIA x

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  • Hi there

    Try not to worry. Worse case scenario, if it has I'm sure it will be taken care of during your hysterectomy.

    I was diagnosed with endo on my right ureter in October. Few weeks ago my kidney started to hurt. When it hits me it's quite literally like someone is stabbing me in the back. I feel winded afterwards and usually end up on the floor.

    My specialist said it couldn't be removed due to its sensitive location! As I don't want to end up with kidney failure, I've asked my gp to refer me to a specialist endo centre, to allow me to get necessary treatment. Just waiting on my appt.

    Trust me you are not alone. If you are concerned at all, mention it when you go in for your hysterectomy, and ask them to check it out.

    Good luck X

  • I'm so glad you have taken control in getting the right treatment for ureteral endo as often it is only found after kidney failure. Is is just so inappropriate for general obstetricians to make decisions on what is an area for experts only. x

  • Hi there

    There's a few of us on here with kidney pain. If you look at my profile, I have followed a few women with similar symptoms, as I'm desperate to get to the bottom of what's causing mine.

    I too have had kidney pain now for about 6 months. My pelvic pain started like a year and a half ago. The kidney pain started off gradually but worsened in intensity to the point where I'm on morphine, but still feel the pain, and have been off work for months now.Both pains have progressed to now be every day.

    They found blood in my urine but I tested negative for infection or kidney stones. If you have not been checked for stones they should check that.When they checked me for stones they used an ultrasound and also looked at my liver and gallstones.

    My kidney pain feels like an intense throbbing/aching with little stabbing pains that last for hours or I have extreme stabbing pains which make my whole body spasm and I cry out. The pain seems to be focused on my right side just under my ribs on the back. Sometimes I have it on the left side too. In addition sometimes I felt the pain either radiate down my back or round my side.

    I didn't realise it was kidney pain until my gp told me because I thought kidneys were much lower down your back! My gp says it might be referred pain due to the endo on my bladder. My latest consultant is a teaching professor and is intrigued by my case due to my unusual symptoms, although when I've seen his stand ins they tell me kidney pain can't be related to a gynae problem- and I'm like lol are you serious!!I've red a lot of stuff that says you might get kidney pain if you have endo on or in your urinary tract.Although apparently endo of the kidney is very rare, however endo on your ureters is at least known to cause kidney pain.

    Anyway I'm 2 days post my 2nd lap. They found endo on my bladder, on the "uterovesical fold/pouch" and in the pouch of douglas/recto vaginal fold. An mri also showed endo inside one of my ovaries but they've left that for now.

    Unfortunately it is too soon for me to tell if the lap worked yet, but I have been getting kidney pain these past 2 days even though I'm on my meds again. Im hoping that its just referred pain from what they took off my bladder.I will post an update once I've recovered a bit more. If the lap hasn't worked they want to send me to renal, although after speaking to my consultant on the day of my op I get the impression it could be the urology team too.

    I really hope that I've not scared you! But just giving in you as much info as I have from my own symptoms. Ironically, my endo is apparently mild since I have no adhesions. None of it showed up on ultrasound and only the endo in my ovary was found in mri. Just shows you that the amount of endo doesn't correlate to the amount of pain. Although for me at least I'm not convinced that my journey is over quite yet.

    Hugs

    Xx

  • Thank you for replying, I have got an appointment with my doctor next week I will see what she says but the pains you have described are similar to what I'm experiencing at the moment it hasn't got has bad has stabbing pains just intense throbbing all the time.

  • That's exactly how my kidney pain started. At first it was so subtle I thought perhaps I imagined it, but gradually got worse. Definitely add this symptom to your pain diary.

    I really hope you get sorted.

    Xxx

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