Kidney area and higher back pain

[AkiBoo]

Hi, I am getting quite bad pain in left back just under rib area and also at shoulder blade area since I had a suspected kidney infection at end September. My urine tests are clear now and my blood tests seems to be OK. I am looking at creatinine level, which is around 71 so it falls in normal category.

I get rib pain in the front and back but back side can be worse from the kidney area shooting up.

The similar pain is on the right hand side but with less intensity.

I have been concerned with my ureter being affected by Endometriosis but since my blood test comes back normal, GP are not taking any notice.

Could these pain occur from diaphragm or bladder Endo, as my bladder is all covred by Endometriosis? I am pretty sure I have got right diaphragm Endo, too, as I had very bad right shoulder pain when I used to have periods but as I am now on Mirena and Decapeptyl, my right shoulder pain has gone!

I also feel like I get cracking feeling on my left side just under rib, I am wondering this is something to do with Endo as well?

Any thoughts and comments appriciated!

[angelyn]

Hey hun..I was diagnosed with bladder endo and a rare kidney condition called loin pain haematuria syndrome. They removed the endo on my bladder (never looked inside ) but my kidney pain persisted.

My kidney pain is both sides, worse on the right. It starts behind the bottom of my ribs in my back, radiates down and then around my sides to front. This pain is renal colic (same pain you get from kidney stones) I will be on morphine and other pills permanently for this.

They kept finding blood in my urine but every test/scan came back clear. Finally I demanded to be seen by a kidney doctor (nephrologist) and he diagnosed me with loin pain haematuria syndrome. It's very rare, but mostly women get it.

I'm waiting for a cystoscopy and getting listed for 3rd lap, but this one at endo specialist centre.

Thst shoulder pain is usually a sign of diaphragm endo I think. You should demand to be referred to a specialist endo centre. Your gp can't refuse this :).

I hope to god you haven't got LPHS..there is no cure and all they can do is manage the pain. Defo worth asking to be referred to specialist endo centre

Hugs

Xx

[AkiBoo in reply to angelyn]

Hi, angelyn

Thanks very much for your reply!

I am sorry to hear that you have got LPHS, sounds very painful and as you say, pain management is the way to deal with it.

I looked it up, and it says it can occur after kidney infection. I don't know if my urine contain blood. Not on naked eyes and my sample has never been sent out to a lab so never know there may have been micro haematuria in my urine. But it can be possible.

My pain is more to do with upper side of body so I was wondering more to do with narrowing of ureter but so far, my blood test seems to be OK.

Another thing is that when I was visiting Japan, I saw a urologist. When he looked at my kidneys with ultrasound, he detected a cyst on my left kidney. He didn't seem to think this is causing the pain and said it can be problematic if the cyst becomes bigger.

I am seeing a Endo specialist gynea in Plymouth and he seems to be a nice person. However, I am not sure how experienced he is when it comes to complex cases. He doesn't seem to think I have got endo on my diaphragm as this was not recorded on diagnostic lap carried out by a general gynea.

Thanks a lot, hope you can get as much help and support as you wish to deal with endo and LPHS.

Hug

xxxxx

[Breadmouse]

Hi AkiBoo (and hi Angelyn)

I have hydronephrosis (swollen kidney) which gives me pain under my ribs front and back. It also feels like something is enlarged when I lean that way. I had a large ovarian cyst and the Dr thinks that scar tissue following that removal has restricted my ureter. I found out yesterday it is completely non functioning and needs to be removed. All my blood tests and urine tests are fine. It was picked up on ultrasound that I had as I thought I had another cyst

[AkiBoo in reply to Breadmouse]

Hi Breadmouse.

I am so sorry to hear that you have to remove your kidney.

This is something I am concerning about, I am supposed to have ultrasound test but it will be in 4-6 weeks time.

I am hoping someone can look at the ureter as well but not sure if ultrasound will pick up narrowing of ureter.

It is quite worrying when my pain is from kidney area. But GPs doesn't seem to concern about my kidney as the blood test is normal.

Ah, you grow up near Plymouth? I don't actually live in Plymouth, I live in Newton Abbot but Derriford used to be listed as an Endo specialist centre in Devon so I asked my GP to refer me there.

Thanks for your message, I wish you get the best possible treatment for your condition, too.

xxx

[Breadmouse]

I grew up near Plymouth

[Breadmouse]

I don't think ureter would show up on ultrasoud but who knows. When are you seeing endo specialist?

[AkiBoo in reply to Breadmouse]

I asked for an extra consultation, it is in about 10 days time. Hope he can refer me to a urologist as GPs are fobbing me off.

[Pettal76]

Hi did you ever find out what was going on? I'm in a desperate situation. I've had ultrasound, OGD, and now a CT scan coz of the same type of pain your describing. I've been under the gynaecologist since June last year, never actually seen the consultant and the ones I have seen have been horrible, making me feel I'm wasting their time. I've been waiting for a laparoscopy since December and have been told it will be May at the earliest. Since then I've developed the same kind of pain as you and the CT has picked up hydronephrosis, I have blood and protein in my urine. I've spoken to every consultant secretary I can gone through my GP 3 times asked occy health to help and now gone through PALS but nothing can hurry my appointment. I'm now off sick and in terrible pain. I don't know where else to turn. I've even emailed the nearest endo specialist centre direct to ask for help. I'm worried my kidney are going to give in and no one gives a damn! Sorry rant over! Hope you managed to get your issue sorted I'd be interested to know what it was. Oh and I'm a nurse and trained in Derriford hospital, I've now moved to Shropshire and Derriford is excellent compared to here! Thanks for listening!

[AkiBoo in reply to Pettal76]

Hi, Pettal76.

Really sorru to hear that you have hydronephrosis.

Is it possible to see your GP and ask s/he to write a letter to your consultant to bring forward your appointment? Also, have regular blood test to make sure your kidney have good function?

I think you need to be treated adap, I am not sure where your consultant is and how good is your centre, but it might be an ideal to seek a better centre, too. There is a facebook group called EndoRevisited uk where you can ask questions about consultants and Endo centres.

I had to travel to Oxford for my treatment due to sevirerity of my condition. I am really glad to have made such choice, I don't think the consultant in Derrirod knew exactly what he was dealing with. But the condultant in Oxford knew what she was dealing with.

Good luck and hope you will find the best treatment asap!

xxxxx

[Pettal76]

Hi AkiBoo,

Thank you for your reply. I've been to my Gp several times he said he would try hurry things along but I still haven't heard anything. I think a trip to A&E is on the cards this weekend! It may be the only way I get sorted. No bloods have been done to check my renal function. I'm going to insist I get referred to Birmingham women's hospital when I next get in touch with my GP. Did they find out what was going on with you? Was it the endo obstructing the ureter if so how were you treated?

Thanks for you support,

Pettal x

[AkiBoo in reply to Pettal76]

Hi,

Sounds like the A&E trips are good plan!

Yes, both ureters were affected and apparently endo around ureters were taken out.

I still get pain on left side back, a bit lower to kidney are though.

One thing I noticed is my blood pressure became slightly lower.

Apparently, unknown high BP can be a sign of endo obstracting ureter, too.

Good luck with your A&E trip!

x

[Pettal76]

Interesting! My blood pressure has been much lower too. My symptoms sound identical to yours. I will defo get myself seen asap. Thanks again, it's nice to know I'm not alone! Hope your pain doesn't affect you too much xx