Kidney stones anyone? - Interstitial Cystitis (ICN) Support Forum

maryla · 10-31-2009, 04:30 AM

Hi all,

I have been hurting pretty bad in the last few months. I told my DO and my uro I felt like I had kidney stones and both kind of pooh-poohed me off. Last Sunday I started feeling pretty bad again, So Monday I called my uro thinking I had another bladder infection, he was on vacation so they told me to call my DO or my gyn. So I went to my gyn and she first said it looks like a uti and gave me meds and sent my urine for a culture.

She called yesterday and left a message saying it was kidney stones instead of a uti. I just feel so ****** for lack a better word that I have not been taken serious yet again by drs.!!!!!

Also, since it was Friday, I have to wait the weekend out and see what she advises me to do. So if anyone has any knowledge of having kidney stones and what they did. I'd love to hear it. They have my bladder going crazy with pain!!!!!!

thank you all in advance.

hugs and blessings

Dakota · 10-31-2009, 05:07 AM

Hi Mary,

I can't help but wonder how your Gyn can say for certain that you have kidney stones without doing a CAT scan. Kidney stones are what started all my problems three years ago. I thought I had a bladder infection, and my primary doctor put me on Cipro. When I did not improve she changed the antibiotic and sent for a culture. A few days later she called and told me to stop taking the meds and get to a Uro. He sent me for a scan and they found I had four stones, one of which was stuck in the ueter. My stones were considered silent as I had no real pain, just burning and frequency. They had some trouble breaking mine, and I needed three procedures.

Yes it could be stones, but I do not understand how they can be sure without further testing. You will most likely need a CAT scan or exrays done. Hope you can get an answer and start feeling better fast.

maryla · 10-31-2009, 05:22 AM

Dakota,

thank you for your reply. My kidney's have been hurting on and off pretty bad since July. And I am having more bladder and urethra pain since and just feeling like I have a fever on and off too.

I'm not sure either how they could tell unless there were some in my urine culture. I know my urine sample looked life pure pus when I took it this week. At the office they just said it had lots of blood and protein and other stuff? Which the blood really isn't surprising.

I just want to have just one pain free day, just one!!

What procedure did you have for your stones?

hugs and blessings

Dakota · 10-31-2009, 06:30 AM

Mary,

I've just read both your responses. It sounds like you could have a kidney infection going on too. I hope you can get in to see your doctor soon, because you really need an answer as to what's going on! The stones can cause infection and that's why I would think they would send you for that CAT scan asap. My stones were done with a laser to break them up so I could pass them. The first procedure was not completely successful, and I was stented for over a week. The second time I went to a different hospital (Uro did not like the equipment at the first) and they finished breaking them. I was left with one other stone in the other kidney (not as big as the others). He gave me the choice of leaving it there and see what would happen or getting rid of it. I decided I wanted it out, so I had lithotripsy. From what you've said (fever too) I think it's urgent you get help soon. I wish you the best!

Dakota

Skynard · 10-31-2009, 12:08 PM

Hi there - my IC journey started with kidney stones. They thought I had a uti and gave me antibiotics, when that didn't help after two tries, I went to the obgyn. He ran all sorts of tests and didn't like what he saw with the blood in the urine and the pain level. He sent me to a urologist who immediately sent me down for a CAT scan. I can tell you if that if you get to a place where you have to go the hospital, they will not take you seriously unless you tell them you are an eight on a scale of 1-10 (10 of course, being the worst). Mine passed after several days- which by the way, I found comparable to labor, but others have theirs blasted out with the laser. I think it is up to the doctor and what kind of mood he is in as to how long they let you suffer! Just my personal opionion there...

I pray you start to feel better soon. I understand your pain.

Skyn

**Judith56** · 10-31-2009, 03:12 PM

One of the things they tend to tell you to do when you have stones is to drink lots of water to hopefully help flush the stone out. I have a silent stone right now in one of my kidneys. If the pain gets out of hand go to the ER, or if you start to run a fever as this may mean it has turned onto an infection.

maryla · 11-04-2009, 06:48 AM

I went to my DO for a follow up on the kidney stones. He sent me for a ct scan, which apparently there were none. I wonder if they could have pasted in a weeks time? When I did go in Monday my pain level was to the max and over. The nurse just looked at me and said You're a 10 huh? It felt like a 10++++ I had groin pain so bad I could barley walk? Oh, I don't ever want that kind of pain EVER AGAIN!

Now my bladder still hurts a bit, but nothing like the last 2 wks. Now I just feel so exhausted it's dibilitating!!

Thanks for listening! Hugs and blessings

Skynard · 11-04-2009, 11:50 AM

Been there, done that. I would bet my last nickel you had kidney stones. They are no fun, huh? They zap the life right out from under you.

I hope you start to feel better soon.

Wishing you well.

Skyn

aleet7 · 11-10-2009, 11:36 AM

Hi Mary,
I've been dealing with kidney stones since April. My ct scan showed 2 stones in my left ureter. I had these stones since April and by June I was tired of the pain. My uro scheduled a ureteroscopy to remove the stones but by the time he went in the stones had passed on their own. I never saw the stones but still had the pain as if they were still there. So, yes the stones could've passed by the time you had the scan. I had a recent scan last week on monday but have not heard any results from my uro or my pcp! I've been taking Flomax to pass the ones that I currently have. Be aware that they can return! Kidney stones are certainly no joke!!!
Best Wishes,
Aleet7

maryla · 11-11-2009, 03:25 AM

Aleet,

So it sounds like yours have returned? Urrrr!! I had been telling my DO and my uro that my kidney had been hurting since July. And I guess they finally did pass. I've been getting chelation treatments and my DO just though my solution was too strong and was causing the the kidney pain.

No it hasn't been easy for a while with me!! I wish that there was a way to prevent them from coming back. I've had them before, but I think they were worse now than ever because my bladder is really bad now.

Here's to a better day!

hugs and blessings

aleet7 · 11-11-2009, 04:26 AM

Mary, I've heard that there is a special diet(ughh we're already on the IC diet) that can prevent them from returning but none of my docs has chosen to share that with me. Drinking lots of water can help prevent them because often times dehydration is the culprit. I do know that even after they pass there is still some pain from the stone scraping the ureters as they travel. I was told to take Ibuprofen for the inflammation(not good for most IC'ers). I too am wiped out from the pain. My husband said that I moaned all night as I was dreaming that my kidneys were hurting me(I kept waking up tossing and turning to ease the pain)! I pray for relief for both of us!!

Best Wishes,
Aleet7

Mothergoose · 11-11-2009, 04:36 AM

Same thing happened to me over and over again they would do an IVP and say I had stones, then I would strain my urine for ages but never found the stones, I was in the hospital for a week and had a ureteroscopy, on several different occasions, but each time my uro said he could not find the stones.

Now several years later I wonder how much of this was IC and not stones at all. I know the IVP's showed my ureters dialated but I still wonder as I also have retention and they figure my urine backs up into my kidneys. I still get the same kidney pain when I flare so I wonder.

MG

aleet7 · 11-11-2009, 09:19 AM

I was told 9 years ago that I have reflux in my kidneys. I didn't realize what that meant at the time. My doc didn't seem to think it was a big deal. It seems that I've had a lot of issues with my kidney because as a child I would hold my P and have awful flank pain.

I was really frustrated that my doc didn't retrieve a stone so that I could at least know what kind of stone it was for prevention's sake. I too wonder how much of the pain is from IC!

valerie michele · 11-14-2009, 04:33 PM

My ic was triggered from a kidney stone that passed one year ago on Nov. 9, 2008. I will never forget that night. I have been in a constant flare ever since. The stone passed through my left kidney/left ureter and all of my ic pain is on the lower left side. I still have two more stones in that kidney. They were to small to blast last spring. I want to make another appt. for an mri to see what they are up to now, size wise. Can anyone tell me if the vibrations can cause more trauma and damage to the bladder? What would be the least traumatic/damaging to the bladder to get these things out of me? One stone caused me to have ic and has completely changed my life... none stop flare. Even most ic safe foods hurt. I take prelief too and I worry that it will add to the size of the already existing stones. So if one did this much damage would I even survive the others? I also have PFD and I cant even imagine how bad that could be with another kidney stone going through. I have really bad urinary retention now too. Any suggestions would be greatly appreciated.

Dakota · 11-15-2009, 05:31 AM

Hi Valerie Michele
As I mentioned above, my IC started with kidney stones too. It has been three years, and like you, I've been in a constant flare since then. I had four very large ones and three procedures to remove them. I also was stented for over a week, and when I saw the size of the stent I could not believe it. My third procedure was a lithotripsy to remove a smaller stone in my other kidney. Before all this happened I never had any bladder problems. I can't even remember having a UTI in my whole life. I still have four very small ones left, but have been told they should not cause any problems. I don't believe it for a second. I do understand your concern about the Prelief effecting the size of your stones. I have to take calcium because of bone loss, but it's always on my mind that it may cause more problems. I also have PFD and my new Uro/Gyn who has reviewed all my records seems to think that it was caused by the procedures to remove the stones. I was shocked by that! I think having a scan to check on the size of the stones you still have is a good idea. When you ask about vibrations, I'm not sure what you're referring to. Do you mean lithotripsy? I honestly believe it was the first two treatments with laser that caused the damage for me. Wish I could be of more help, but I think you would benefit from a cat scan to see what's going on with the remaining stones.