Pain around kidney area only on (R) side. Could Endometriosis be attaching to my kidney?

[Dezzo7]

Hello everyone,

First time posting! I have endo pains in the regular areas ie: abdomen, pain radiating down legs and lower back pain but this kidney pain is something else! Has anyone else had similar pain?

[priyainindore]

Hi there, yes I have that but I've had scans and liver function tests in the past which always indicate that my kidneys are fine. I had immense pain once, which led to an ultrasound showing really tiny kidney stones, but they were the kind that everyone gets and passes without any issue so it was NFA (I was in A&E then and the urologist said this is likely a red herring for something else).

I'm convinced it's endo adhesion/nerve pain. Initially they thought it might be my gall bladder. It may just be referring pain from the main source.

[Dezzo7 in reply to priyainindore]

Hi, I am waiting for an appt for an ultrasound scan, don't think it will show anything but at least I can cross a scan of the list of results that have come back negative!

I think your prediction is correct on endo adhesion/nerve pain, always go with your gut feeling!

[priyainindore in reply to Dezzo7]

Do let me know if it indicates anything. My lower right side pain back front and referring up to the kidney area is almost constant recently.

I'm not sure if it's because something is pressing on a nerve....every time I eat its like things start contracting and pain starts

[Dezzo7 in reply to priyainindore]

I will get back to you when I know more, hopefully we can get to the bottom of this!

[Xxxxx11111]

Yes I have always had pain in my right kidney area and had lots of tests on my kidneys. However on having a laparoscopy it showed severe bowel endometriosis where my bowel was fused to my pelvis on the right hand side. As your bowel/intestines are throughout your abdomen pain can be in various areas. I also always had pain in my rib area on the right hand side.

All pain stopped after surgery 20yrs ago but has started again over the last few years.

[Dezzo7 in reply to Xxxxx11111]

Hi, thanks for easing my mind. I have had pain in my (R) rib area for quite a while now and it's just getting worse. I am on the waiting list for a hysterectomy. I do remember the gynae surgeon saying that there would be a bowel surgeon in when I have my operation.

[priyainindore in reply to Xxxxx11111]

Did your endo show up on an mri first or did you have the lap? My MRI has come back indicating no deep endo.

Awaiting a lap but so scared it will co.e back normal too and also a colonoscopy though I'm less convinced that will show anything.

[Xxxxx11111 in reply to priyainindore]

No I didn’t have an mri, I always understood that a laparoscopy was the only way to 100% diagnose. It did help that at that time I had private health insurance with my job so could get referred quickly.

[Whoisthis in reply to priyainindore]

Don’t worry I had all negative scans for years and had endometriosis removed .. you know its there.

MRI clear

CT clear

Vagina scan clear

3D bloody expensive scan clear!!

Excision surgery, removed large amounts from pouch of Douglas, bladder and pelvic wall.

[Shiny212]

Hello

Please get it checked as I had severe pain and put it down to the endo as I was put through a lot before I got diagnosed. After my second laparoscopy I became very ill and was told that my kidney needed to be removed. I had lower back pain, severe pain in my legs, rib area and abdomen. I also had other symptoms which the doctor said were indications of kidney failure, urine infections, fainting, extreme fatigue, difficulty breathing sometimes, to mention a few.

I don’t want to frighten you, just letting you know what I went through. To diagnose the kidney they gave me an ultrasound first, then an MRI scan.

Hope this helps. Lots of positive energy coming to you.

[Dezzo7 in reply to Shiny212]

I had my ultrasound scan today. I am so tired and lethargic, not feeling my best at the moment as my right side is just a dull ache, really painful.

Did you get any feed back from your ultrasound scan?

Thanks for your reply, don't feel I'm going mad now!

[chloe3011]

Hi Dezzo, I've been experiencing a dull ache deep in my side and back which goes through my hip into my legs. Struggling to sleep at the moment as its so uncomfortable. I've been referred for an Ultrasound soon. I'd love to know the results of yours when you get them

My endo is on my uterosacral ligaments and uterers so it's probably come back sadly.

Feel better soon xx

[Dezzo7 in reply to chloe3011]

Hi Chloe, I will let you know my results when I get them, I have also been struggling to sleep with the pain located in my side.

I've never heard of endo being on uterosacral ligament but as we know it can go all over!

Hope you get some answers aswell xx

[Dezzo7 in reply to chloe3011]

Hi Chloe, just updating you on my ultrasound scan that I had last week. Got results yesterday which came back normal.

Saw GP, had bloods taken and had an examination by GP. She thinks my kidneys are ok and it's all endo. Because it's so severe she has sent an urgent letter to my consultant to hopefully be seen sooner rather than later xx

[chloe3011]

Thanks so much for replying! Pleased the results came back normal, that's good news. I saw my GP who has booked me in for a scan too, my bloods came back clear for the filtration rate, I think mine is likely the return of endo on my US ligaments. It's such a worry and a drain on life, but hoping we'll both get some relief soon. Great that your GP is treating this with urgency for you, sending lots of luck and good energy xx

[Thompson36]

I too had it on my US ligaments with a fused bowel. Total hysterectomy last Feb and within months deep left sided groin pain that at times is unbearable. I think it’s adhesions and scar tissue but no one seems willing to do anything about it as it didn’t show on an MRI. As I had 6 endo surgeries before the hysterectomy they are not convinced another surgery would help 😥

[Dezzo7 in reply to Thompson36]

Hi Thompson,

I am on the waiting list for a Total hysterectomy but not sure now it is the right treatment I need. I also have scar tissue after 2 laps that area is really quite painful and I don't want H to make it worse by having a hysterectomy. I know the hysterectomy won't cure the endo but my surgeon said that was the only procedure left as he would not be doing another laparoscopy. Have you spoken to the GP about the left sided groin pain? No wonder you have scar tissue after 6 endo operations! Get an appt coz you can't continue with that pain!

Good luck xx

[Thompson36 in reply to Dezzo7]

Been back to the Dr countless times, now been referred back to orthopaedics. I saw him last year so will have the discussion to see if it’s the ligaments and if there is anything they can do. My endo surgeon only treats private patients and I don’t feel he listened to me before the hysterectomy. He thought the pain was from a stuck ovary but as that’s been removed and the pain is still there I think it’s deeper infiltration but no one will listen to me as It didn’t show on the scan. I told him where the pain was but you trust what they tell you. I also had adenomyosis and he thought that could be a cancer risk in the future which is why I went ahead. The GP even referred me to a pain management course as they gave up. I have a physio who thinks he might be able to do some deeper work on the adhesions but obviously no idea yet when I could see him. When I was diagnosed at 21 I had a severe case, each lap only gave relief for 2-5 years now I’m nearly 50 I wonder if they’d explained the issues with adhesions and scar tissue whether I would have agreed to surgery each time. You end up being in so much pain you do anything for it go 😥

[Dezzo7 in reply to Thompson36]

Hi Thompson

I hope you get some relief from the physio, you deserve a break now!

Good luck

[Dezzo7]

Hi Chloe,

Good luck with the US scan, if it comes back normal I would ask your GP to refer you to a gynae specialist especially with the dull ache pain in your side. Sounds like the endo might be in your kidney area xx

[Jane884]

Hi Dezzo7, I know this is a really old post, but did you find out if endo was the cause of your kidney pain?