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R flank pain, hydroureter, unknown etiology

Hi there.. I have had a really bad year. As a history, I have had a history of recurrent UTIs in my late teens (27yrs now). A couple of kidney infections as well during that time, treated with oral antibiotics. Otherwise, I have been fairly healthy until my second pregnancy. When I was 19wks pregnant, I was admitted to the hospital with severe R flank pain. U/S studies showed my R kidney was not draining at all, and I had severe hydronephrosis. Further investigation revealed a tortuous "s-shaped" ureter on the R side only. They placed a stent and assured me the problem would resolve itself after delivery, yet could not ever explain why this did not happen at all with my first pregnancy. Long story short, I had 5 stent placements with different styles of stents, with the urologist trying to find one that my body would keep in place. Everytime they would place one, within a matter of weeks it would migrate and coil in the bladder and the procedure would have to be repeated. Finally, I was sent to the major medical center in town, where they tried one final stent placement, which lasted 2wks before migrating, and then they proceeded to insert a percutaneous nephrostomy tube. It took me until the last few wks of pregnancy, it was removed, and I delivered a healthy baby. They were very confident I would no longer have any issues in the absence of pregnancy. They were right, at least temporarily. I went 8 months, healthy, and without any pain, when out of nowhere, with no obvious precipitating event, the pain came back. I knew what it was, just from the pain, but there were also some new symptoms I noticed. In addition to the constant R flank pain, it intensified greatly when my bladder was full, and also intensified during actual urination. I was admitted back to the hospital after a renal U/S showed hydro on that side. I should say, I had a renal u/s where they could only see some mild dilation of the ureter, but my bladder was empty. When I came back an hour later with my bladder distended, there was a large acute change and hydronephrosis and hydroureter were both noted, again only on the R side. I was admitted to the hospital. I spent a week there, during which the urologist convinced me to try another stent, which did nothing for the pain, and it was subsequently removed. The urologist concluded that this was no longer a urological problem, and referred me to a pain management doctor. I did not want that, I do not want to give up and succumb to a life of pain, and pain medications. I knew that this could be fixed, and just have to find the reason. Seems to me there is no reason that if the pain increases when my bladder is full and when I am urinating, that this would not be a urological problem...

Skip a week, made an appt with a new urologist  who was recommended by a coworker (I am an RN). Within 5 min of being in his office, he had a probable diagnosis. VUR.. Reflux.. As I read more information about this condition, EVERY symptom fits what I have been feeling. So he sends me for a VCUG. They inserted a catheter into my bladder, filled it with 600cc of fluid, made me urinate and took xrays along the way. One problem.. No reflux shown. The doctor that read the scan says that it is very uncommon for an adult to have this diagnosis at all and this test definitely disproved that this diagnosis was what I was looking for. I can't swallow it. Everything fits.

So here's my problems and questions.
1. I know the congenital form of this disorder is most common in children. Isn't it possible that if I have VUR, that it wasn't congenital, and rather caused by secondary means, i.e. the multiple stent placements? Seems to me that would be traumatic to the valve and cause some damage.

2. Do VCUGs have false negative statistics??? Is it possible that the reflux is intermittent, and would happen sometimes but not others? Is it also possible that they did not fill my bladder to full capacity, because I know I have voided up to 1000cc in one sitting. Does the amount of fluid injected into the bladder have any effect on the result?

3. As the day went on, after the cystogram, the pain in my R side got progressively worse, and so bad that I made a trip to the ER. Unfortunately my urologist was not on call, and the dr that was, was only interested in me sitting in a hospital bed all weekend on pain meds.. I would much rather suffer at home that suffer in a hospital with nothing getting done over the weekend. I will see my reg dr early monday morning.

So I guess to you, does it sound like this disorder? Can reflux be intermittent and can you get a false negative result when you do in fact have the condition? What would be the logical next step?

I just do not want to live the rest of my life in pain.. I really think that this can be fixed, and I am not willing to accept defeat just yet.
1 Responses
Avatar universal
I happened to be reviewing another ureter situation when I came across your post.  Though this is not a replacement for checking with your urologist; I have to share that your story is a lot like mine, except for the pregnancies.  I was unable to carry babies to term due to endometriosis.  I had the same journey as you but we finally found the problem 8 long years later.

Endo had bound down the right lower ureter.  I was kinked and torturous at the UPJ pelvic brim. (Near your waist) not an area commonly see in IVP or even with a KUB performed.  It took an Endo specialist out of state with partners in urology who could go in via laparotomy and dissect at first. This only held two years and the same problems once again.  My body would have no problem releasing the stents placed in these contraction types of renal colic movements.  My right kidney looks very bad but I am keeping it because of the risk of endo on the left.  I am post hysterectomy, have treated with Lupron, have had many, many surgeries and ultimatley had to have a Biori flap made.  That is when they cut the lower right ureter out and placed the top portion into the bladder and restitched.  It was a by pass of sorts.

Sorry so long but a good approach with looking for hidden deep seated endo as a possible culprit, followed up by a treatment to reduce menses to shrink, laparotomy for a better ability to view and dissect endo (if this is the cause) and a plan for a possible alternative urologically.  When I was diagnosed they said it couldn't happen urologically and only 3% of patients get it.  Today it is quite common for endo sufferers to get it in all these areas because of ruptures, cysts, menses, etc, that cause the dandelion effect each month and spreads into the oddest areas.  I have met more women than expected who have endo of the lung and arm pits.  It's the oddest thing but see if these help give options to your Dr.'s.  Endo Dr's. are trained deeper than ob/gyn's because they deal with these cases on a day to day basis.  Specialist are getting limited as there is no cure.  I felt much better after this approach and just deal now with dense scaring and adhesions which I will take over renal colic any day.  I meant to mention it is not uncommon for it to subside while you were pregnant because your cycles were ceased.  When you cycle each month, so does endo.  It fills up like chocolate cysts and ruptures causing that dandelion effect I mentioned above.  It will settled down for a week or two and it starts again.  Meanwhile, the webbing madness with the secretions start new growth in the areas in lands on.  This is a generic laymans way of expressing this but shared in the endo educational resource materials worldwide. This is not medical advice but a sharing of a common story with some results to share.  Please seek medical attention to you or whomever this may help in the years ahead.  Good Luck!  My heart goes out to all sufferers around the world.

Note: The pelvic brim area is a very sensitive area for any Dr. to be operating near and for several risk factors this may be an area of controversy.  I would not recommend any Dr. to go near this area for dissection purposes unless medically necessary as it can damage arteries, as I know from experience.

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