FINALLY A DIAGNOSIS! Flank pain etc is GONE!! Please read for inspiration.

[DLAZ]

Hey all I want to share my horror story with a happy ending!! Thank you for all who've supported me on this forum. You're amazing.

I had right side flank pain for 3 years. When to emergency because when I first got it it felt like renal colic that would come and go. They did Ct scan showed I had bilateral stones that were big, biggest on my right side. Assured me they weren't causing my pain since they weren't obstructing.

After a year of on and off renal colicky pain (slightly more mild but still really debilitating) the pain stopped coming and going and never went away- always with me. Doctors assured me it wasn't my stones. I went through GI specialist, GYN, Urologist, and Nephrologist. I had an exploratory pelvic abdomen laparoscopy- found nothing. Had colonoscopy, and endoscopy- found nothing. Endless Ct scans, ultrasounds, X-Rays, cystoscopy, and more trips to the ER than I can count!

Finally this year I found a Urologist who took my stones seriously but first had to rule out tumors before treating my stones. My kidneys were starting to fail, proteinuria, gross hematuria, and an extremely high white blood count. I at that point. Was in such severe pain I could barely walk, stand or drive.

Finally it was time for surgery ( August 17 2017)

My right side stone was 1.2 cm 😱 and my left had a 6mm. He did a ureteroscopy and lithotripsy- lasered the inside of my kidney, placed bilateral stents. When I woke up I was in such severe pain they couldnt get under control so they admitted me. They finally got it under control but I couldn't go pee!! #nightmare so they placed a foleys catheter and sent me home!! Being at home with the stents and a cath was extremely hard and painful!!! Finally the following Tuesday got stents and catheter removed, I felt better for about 20mins and then renal colic set in. Wtf. I was in severe pain the entire week and couldn't pee felt as if something was obstructing. I was on the phone crying every night with the on call Urologist and finally by Friday I told him I'm having severe break through pain and I was on dilaudid at home and for that not to work is pretty rare. He told me to go to the ER right away. I did and they did an ultrasound that showed hydronephrosis, and several stones scatter through out both kidneys, they admitted me right away. The doctors explained everything abnormal shows up as grey matter so they didn't know if it was an infection, stones or blood clots. That night I was passing a lot of blood clots (painful) and basically sand (stone fragments) my renal colic went away after passing that!! Did a ct scan that was clear except hydronephrosis, and a couple stones in my right - 2mm and 8mm. They also found out I have UPJ- narrow ureters so when there's stones in my kidney in the path of fluid it's painful due to partial obstruction and strained urination because of the restriction caused by my ureters and stones!!

So this is for everyone who has kidney pain and have been told ITS NOT YOUR KIDNEY!! There's plenty of small, easily missed reasons you have pain, they just need to look harder!!! Kidney stones can cause kidney failure, proteinuria and extreme chronic pain. Don't give up!! I'm pain free!!! I'll unfortunately always have kidney stones but now I know what I need to do before it takes over my life!! Thanks for reading, had to share in case it could help someone get answers!!!

[Mary-intussuception]

☺

☆☆☆ CONGRATULATIONS DLAZ ☆☆☆

We always knew it was your kidneys.

I am so pleased for you and so glad to hear your GOOD NEWS at last !!!

Now you can get on with your life!

Your family must be so happy.

So truly happy for you.

God Bless

Love

Mary xxx 🐥

[DLAZ in reply to Mary-intussuception]

Thank you so much!! You helped me so so so much.

I'm so grateful to be without that constant life shattering pain, but I have extreme debilitating fatigue still, and the brain fog. I'm trying to fight it but it's impossible!!

[Mary-intussuception in reply to DLAZ]

It's lovely to hear from you.

Could these symptoms be put down to the time it takes to recover from the Surgery and complications? You lost years from your life, but sometimes we need a bit longer to recover maybe? Hope, with time, you will get stronger and feel better. You did go through a lot , prior to, and during surgery.

Just another thought, have you ever had blood tests to check your Thyroid Function? Ever had Antibodies tested?

Or maybe after this type of surgery your Adrenals need to be checked? Google Adrenal fatigue and also Underactive Thyroid symptoms.

Is there any ongoing follow-up care / appointment with the good Urologist?

Finally, did all the symptoms occur following childbirth?

I do hope you recover fully.

Xxxxxx🐥

[ssdw1958]

I also have kidney stones I have had at least 13 removed by zapping them, passing them, or the doctor doing what he does. One good thing for me is that my Urologist gets kidney stones also he knows what they feel like. Right now I have at less 10 kidney stones btwn both kidneys.

I am glad they finally found out what was going on and you knew enough to keep on letting them know something was wrong.

[LaurieRose]

glad you're pain free and thank you this is hopeful.