Kidney pain?

Hi all, I was diagnosed with endo in May 2014 following a laparoscopy. The surgeon told me a large amount had affected my bladder and as I have always had a lot of pain in my back below my shoulder blades which had her thinking that I could have it affecting my kidneys too and that I should be referred to a urologist. 6 months on and my gp has finally written a referral letter but the pain has got progressively worse to the point I'm suffering every single day. So now I'm wondering if anyone else has had endo affect their kidneys and has any advice? My gp has prescribed co-cocodamol to ease the pain, which does help, but it makes me feel really unwell.

Please help!!

Thanks x

[Natpuss]

Keep pushing your gp and even go to a & e if you are in so much pain. I've had an horrendous experience with endo and my kidneys! I'm not writing this to frighten you just for you to give the medical professions a kick up the bum.

Last yr they found my kidneys were so dilated that I needed to have ureteric stents put in my body to keep my kidneys drained. Once I'd had these done my pain in my sides pretty much went, however I do have to have them changed every 6 months under general anesthetic. .....this seemed to work fine for a yr but I was admitted to hospital two days ago with stabbing pain in my right side again even though I have the stents in. It looks like the stents aren't keeping my kidneys clear and I have ended up with two Nephrostomy drains coming out of my back to clear my kidneys and any infections. I'm hoping this will only be a temporary thing as I'm 32 and don't fancy having to carry around with me the urine drain bags for the rest of my life. Anyway I'm hoping my story is on the extreme and rare side but pls keep pushing your GP your kidneys are very precious and damage can't always be reversed if left a significant amount of time x

[blueboo]

Hi there, I just wanted to reply and say that I had endo on my ureter (the tube between the kidney and the bladder) which was squeezing the ureter so tight that it was blocked, resulting in one kidney becoming very dilated and only functioning at 25%. I had a stent inserted in the ureter twice, which helped but when it was removed the blockage happened again, and in the end I had surgery to remove the endo which turned out to be a golf ball sized mass, and I had to have a section of my ureter cut out then re implanted into my bladder.

So yes, even though lots of doctors don't think of it, endometriosis can affect your kidney, even if the tissue itself is growing on a different part of the urinary tract. unfortunately lots of urologists don't know a lot about endo as it's a gynaecological condition, but it can affect anywhere in your body. Don't let then fob you off. Since my op which was 2 and a half years ago, touchwood I've had no further problems.

[angelyn]

Hi cm

Well I too have kidney pain and have just been diagnosed with endo. It's taken a while but they found endo on my bladder during the lap.They didn't remove it due to risky location.

I have a follow up in 4 weeks. They still don't know what's causing my kidney pain after the lap. However the consultant did say I might need to be referred to Urology. I want them to check if the endo has infiltrated my bladder..Perhaps that's what been causing my dark urine and kidney pain. They previously found blood in my urine but came back clear for infection. Either way my kidney pain may be related to my bladder endo or I'm unlucky enough to develop two conditions at once. The urologist will be able to check though.

I've read on here that it can commonly affect the ureters, and also that shoulder tip pain could be a sign of diaphragmatic endo as it irritates the phrenic nerve. I've had an uphill battle just getting them to consider endo..now finally the will take me seriously and investigate the kidney pain I've been having.

Also a few other ladies have responded to some of my posts about kidney pain so you might find some more info on those too.

Don't give up..keep fighting to get the treatment you deserve!

Hugs

Xx

[Hidden]

Hi ladies,

Thank you for your responses. I am almost glad to hear that i'm not the only one experiencing such pain.

The pain has been pretty awful over the last few days, and is really getting me down. It's affecting my work, and my relationship and i'm finding it very hard to handle every day life. I have considered going to A&E over the last few days but I can't see there being anything that they would do, other than say that I need to see my GP.

I have another appointment at my GP on Wednesday this week. I'm even taking my mum with me for moral support as my last two appointments have left me in tears from them not doing anything to help me. It's getting to the point now that I am considering going private, but that has major financial implications. My boyfriend has said that he will pay for it, even though I have been so horrible to him recently from the stress of dealing with this pain every day.

I feel like i'm in a very dark place at the moment, and as much as people try to understand, they can't fully. Because there is nothing to see with this condition, I feel like people are starting to think i'm playing on it to get sympathy, but i'm really not. The pain is affecting my sleep, and the condition, as well as the pain medication I am on makes me really tired too so I struggle to get out of bed in the mornings.

Does anyone have any tips on dealing with the mental implications of this? Because it's starting to drive me insane and I feel like I can't control it. I don't feel like myself any more! I don't know what to do.

Thanks xx

[angelyn in reply to Hidden]

I can really sympathise. If I'm honest it's getting me down too. I take max codeine,paracetamol and ibuprofen everyday at the moment.

Even with that I still feel like someone put a hot coal in my groin and left it there to burn for hours. When trying to sleep I try not to focus on the pain by doing the 99 bottles of beer song. My kidney pain is so bad some times my whole body spasms and I cry out. This happens at work and wakes me up from sleeping too.

I've started drinking the cystitis sachets which make your urine less acidic. I'm thinking this might help calm the irritation if the endo is inside my bladder which I think is highly likely.

I used to try not to take the painkillers unless I was in pain. Now I keep them topped up at regular intervals throughout the day. This sometimes works but lots of the time I'm still in pain.

I finally got listed for my lap by going for a private appointment. Until then all the docs kept telling me was my symptoms didn't sound like endo. I would highly recommend getting a private urology appointment if you can. My private appointment was supposed to be £180 to give you an idea. Finally after a year of being fobbed off I was taken seriously.

I've got an appointment with my GP tomorrow. I will demand that I'd I am to wait for a gynae follow up in 4 weeks n then only get referred to urology then I need stronger pain killers so that I can continue to work. I will also emphasise that I've had severe kidney pain for 4 months which they still don't know the cause of.

I'm hoping my GP will give me stronger painkillers tomorrow,chase my gynae follow up and refer me to urology.

My bf must be sick of this by now. HE tries to tell me to be positive and is very supportive but I can see that it's wearing thin. I've had a lumbar puncture, a broken nose and dislocated my big toe. All of those hurt less than this. My lap hurt less than this.

I think half the battle is taking 1 day at a time..I'm trying not to think now I need to last another 4 weeks..just aim to get through next hour/day etc.

Not sure if this reply will help you or depress you! Send me a msg if u want to chat though. We can compare bladder pain

Xx

[angelyn]

P's definitely take someone with you. For some reason I think they believe you less if you are on your own or get emotional. I was both alone and teary in my 1st gynae app. I took my bf with me to the appointment that finally got results.