Chronic flank pain and atrophy...

[CallieJenn]

I dealt with left flank pain after the birth of my first son 4 years ago and it was attributed to pain from my previously diagnosed/treated endometriosis. I never saw the results of the CT scan until it came up again after my second son was born last year, but apparently that CT scan showed left atrophy and scarring. I was born with kidney reflux (worse on the left side) that was surgically repaired, so I was expecting the scarring portion of that but not the atrophy. I had a laparoscopy to remove endo tissue and that seemed to help the flank pain.

Fast forward to last year when I had my second son and the flank pain returned with recurrent infections a few weeks before I went into preterm labor. It has continued everyday since. A CT scan showed more atrophy than the one prior. I started with a urologist who diagnosed non obstructive stones and performed uroflow, urodynamics, and cystoscopies. The stone removal did not resolve the pain. I was told my pain was not from the atrophy or the scarring, and despite egfr values being in the 60's I was told my kidneys didn't need additional testing. Thoughts went back to my endometriosis so I got a hysterectomy to resolve the endo pain and hoped to resolve the flank pain as well, but that didn't work either.

I ordered my own labs for three months in a row to take to a nephrologist, and seeing the consistently 60's egfr and other labs, plus the physical damage, he diagnosed Stage 2 CKD. I was told to just stop taking ibuprofen and change my diet. That's it. My other specialists keep saying to defer to my follow up with my nephrologist coming up, but I'm anxious, depressed, and frustrated at the lack of results after a year of extremely invasive tests and procedures.

Does anyone else have similar experiences? Does anyone have ideas on where I can take next steps for diagnosing and resolving my ongoing pain? I'm not sure if there are questions I'm not thinking of, or if a new care team is needed. I have asked all of my doctors about a measured gfr test or if there's a way to just test the function of my left kidney, but have been told no or to ask my nephrologist (not getting answers from him but I'm cornering him in my next appointment).

[S_dillow]

corner your nephrologist.if he refuses to answer or doesnt want to,id suggest a new nephrologist.

[CKDnomore3953]

I have not had endometriosis- but my sister had treatment for endometriosis and several years after that treatment she had to have additional surgery to remove the abdominal adhesions that had formed. The surgery resolved the flank pain that she was having. It sounds like you have had that surgery once to address your flank pain. If your body creates scar tissue easily you may have formed new adhesions that will need to be addressed. There is a HealthUnlocked community for people who have endometriosis - have you posted your question in that community?

I wish you the best in finding a solution to your health issues.

Lynne

[CallieJenn in reply to CKDnomore3953]

Thanks for the feedback! This was my fourth surgery to remove scar tissue, and since I’d had my last child we opted to do the hysterectomy as well since that was planned for the near future. The flank pain started after the birth of my first son and I had my third endo surgery in which he did remove scar tissue. However, during the fourth surgery after my second kid was born he did not find any similar scar tissue had formed again in that area to remove.

[Bassetmommer NKF Ambassador]

Stopping ibuprofen is critical. It is what cause my CKD. See if you can get to a renal dietician. It can make all the difference. Proper diet can deter further damage and slow the progression. At age 35, a GFR of 60 is not a good thing. Do not let them blow you off. See a nephrologist, make sure you stop creating stones which can be done with medications and change up your diet. It really works. There is a lot of information out there on early intervention and diets.

I think, and I am not a doc, but there should be further testing to see what is causing the pain. You have resolved the endometriosis. Sounds like the stones are gone. Not so sure this is CKD related and maybe looking into nerve or other causes might be good. Keep advocating for yourself.

We have a lot of information on diets and healthy life support here so ask away.

[CallieJenn in reply to Bassetmommer]

Thanks for you reply! I did stop ibuprofen in December when I was diagnosed and have met with a dietician three times since to alter my diet. It’s been a good experience so far but I think my nephrologist put too much stock in trying diet first because I’d already been doing low sodium for years as well as more home cooked clean meals. There’s definitely room to continue improving but I’m hitting a wall with some things because I don’t always have the energy to meal prep or cook due to the pain and the severe fatigue has limited my ability to refrain from caffeine.

As far as pain source we have recently done an MRI to check for nerve or muscular issues and that came back clean. There’s cysts on my left kidney and a couple new small, non obstructing stones. Blood flow is good though and determined not to be a source of pain. They’ve come up with nothing so far after a year of testing and procedures.

[Darlenia]

My hubby has the kidney issues. On the other hand, I was cursed with endometriosis. As you probably know, endometriosis has no cure and symptoms can continue beyond hysterectomy and menopause. It's pretty well established that endometriosis, if not an autoimmune condition in itself, can be linked to various autoimmune conditions. In your case, I wonder if you may have an underlying autoimmune situation which stokes both your endometriosis and kidney situation. As for me, I've had surgery and hormonal treatment for endometriosis and, although I managed to stave off a hysterectomy, I still have lower left side abdominal (apparently lower down than yours) which started back then and continues today - well into my old age. I sometimes wonder if scarring on the outside of my intestines from endo may have created that situation too. So that also makes me think you might have scarring in and around your kidneys or ureters. Are these situations interrelated or are they not - a big question. I sincerely hope you and your nephrologist can find the reason and a fix - for both your pain and kidney status. I think I would start out asking him to check for autoimmune disorders if things stay inconclusive. And then move on from there. Sending you a big wish that you find an answer sooner than later.

[CallieJenn in reply to Darlenia]

thanks for the reply! We are definitely hopeful the hysterectomy helps reduce my need for surgery from every three years to much farther in between with the reduced hormonal activity. So far I’m negative for other autoimmune stuff but will question that route and if there are other markers we should be checking into. Scar tissue is definitely one of the side effects people don’t realize will occur, so many of my procedures involved removing prior scar tissue as well.