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Postby bunnymum21 » Mon Apr 27, 2015 3:15 pm

Hi all,

Hope you don't mind me posting something like this - I am really stuck and beyond fed up.

July 2014 started developing lots of bowel changes, which was diagnosed as acute colitis. About 1 month into this, I developed kidney infection after kidney infection, urine infection and urine infection. These got ignored because they were not as urgent as the bowel changes, and it wasn't until January 2015 that people started putting the two and two together.

Since August 2014, I've had varying degrees of loin pain/flank pain/renal colic, accompanied by numerous kidney and urine infections that take an age to go. I was getting visible and non-visible haematuria and non-visible proteinuria in my urine, and whenever a sample was sent to the lab, it came back clear.

In the last 3-4 months, I am going less and less time between each "infection" (I put it in speech marks because 9/10 there is no bacteria causing it), and am currently only going 1 or 2 days without "infection" symptoms starting again. My loin pain is getting worse, especially when I lie on my side to go to sleep (it feels like it is throbbing, worse on right side). I struggle to urinate at times, and have had leakage problems along the way. Over the last 3 weeks I have been getting worsening shortness of breath, lightheadedness, shakes and dizziness, as well as general fatigue.

Here are a list of my investigations;
BLOOD TESTS: November 2014, reduced Kidney function, low urea levels, low clotting. I have just had new bloods this morning.
COLONOSCOPY: October 2014, fine
MRE: November 2014, fine
BILE SCAN: October 2014, borderline - indicates a possible problem with my body excreting too much bile, but because ti was borderline, they are not treating it
ENDOSCOPY: February 2015, fine
CT SCAN: November 2014, showed calcification and a possible change in one of my kidneys similar to medullary sponge kidney - this diagnosis has been dismissed as my symptoms do not match with MSK
US SCAN: November 2014, fine
CYSTOSCOPY: April 2015, fine

Here are a list of my referrals;
Private urogynaecologist: due to the NHS taking far too long, plus was told they were very good by a family friend. Believed I may have interstitial cystitis with some form of kidney disease, specifically kidney reflux
Private nephrologist: referred a couple of weeks ago by my private urogynae, yet to see them
NHS urologist: believed I had interstitial cystisis, but since cystoscopy was clear this is no longer the case. Agrees I should be referred to renal team as my results are pointing at the kidneys as being a cause
NHS gastroenterologist: referred purely due to bowel changes, believes the collitis caused inflammation that has spread to bladder and kidneys, my urogynae agrees with this

So far, people have "diagnosed" me with;
1) intrinsic kidney disease - due to my urine results and loin pain
2) interstitial cystitis - not possible due to the cystoscopy coming back clear
3) iGA nephropathy - needs biopsy to be sure
4) kidney reflux - needs confirmation by nephrologist

Any help and advice would be appreciated.

Thank you in advance.
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Joined: Thu Dec 18, 2014 12:27 pm

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