kidney reflux in adults

[Lanny89]

i was born with kidney reflux and was told i would grow out of it, i'm 20 now and i still get the exact same pain as ive always had! recently its got worse and im booked in to have a ultrasound scan in a few weeks, is there anyone out there that has still got kidney reflux from birth?? and how do you cope with it??

[jestlamar64]

I suspect that I have Kidney Reflux but am having a terrible time with finding a dr. who will listen. I have had 2 CT scans, 4 months apart,  and both show hydronephrosis in my left kidney - had a cystoscopy and the dr. found no obstruction. No UTI's in the past 6 months - but horrible left flank pain.
any advice??? I am at a loss and feeling more and more discouraged everyday.

[grs1986]

When I was 20 I was diagnosed with Kidney Reflux. Unfortunately it was too late to save my left kidney. I'm 47 now, and over the years the doctors have kept a close eye on my one kidney I have left. The only problem  I have is I never have symptoms of UTI's, which can lead to a kidney infection, and sometimes does. You can lead a perfectly normal life, but with some restrictions of course. When I had my daughter I had her tested and sure enough she had inherited it from me. thank god she has outgrown it. If you are diagnosed with Reflux and have children, don't wait; get them tested you could save their kidneys.

[kirstyo]

I never got notifications for the new posts on this thread so sorry for my late reply. yhurley are you talking about urodynamics test? yes i have had that a few years ago and will never go for it again, it was awful. the water they put in through the tube wouldnt go into my bladder and they spent ages trying to get it before just giving me water to drink instead. they now think that my problem is not related to my reflux, they think i have a stomach problem or possibly a food allergy which is causing my more recent problems. i have lost count of all the tests i have had over the years along with operations as a child for a related bladder problem.

cutecourt, i was advised against surgery in my late teens because of the risk of making things worse rather than better.i did have many surgerys as a child but that was more for a bladder thing than the actual reflux. i am mostly ok these days with my kidneys have not had a uti in a good while. I just make sure i drink plenty of fluids and pee a lot.  however had i continued on with the pain i was in when i first joined this thread, i would most definatley have looked at surgical options.

as for having reactions to medications, dont put up with them. I now only take amoxicillin because i know it causes no reaction, some of the stronger antibiotics they give you will cause a bad reaction for me cefalexin makes me terribly ill. talk to your doctor about changing medication if it is giving you a reaction as there is bound to be something else you could take instead.

[cutecourtx3]

I am 22 yrs old and I was diagnosed a few years ago with kidney reflux after years of horrible pain and UTI after UTI. I have went through most of my life not knowing anything was different meaning I thought everyone had the same pain as me. I have lost jobs over it because as you all know you have your very bad days where you are in so much pain you cant do anything but lay there or days where you are having side effects from medicine such as random vomiting or weak/aches. I have decided to go to the Dr and see my surgical options. I am scared but I cant continue to sacrifice my career and my life for that matter. Has anyone had the endoscopic surgery or the gel out patient procedure? I just didn't know if anyone has had these surgeries. I do not want the scar if I have the choice that is why I am researching just these two that I am aware of at this time. Any info would be awesome!

[YHurley]

Have they given you Cipro or something a bit less strong? In some cases you may have had a reflux in both all this time, just so small that through the years it developed into scarring.  Did you do the embarrasing bladder x-ray where they fill your bladder with water and pee while doing an x-ray and the one where they inject a dye.  I been through a lot of doctors as a kid and even now i have to force myself to drink water...hope you find the answers...i have found that if you are sexual active they have a pill that can prevent UTI before they happen if your prone to them

[kirstyo]

Just thought I would update my situation as it has been a while since i last posted.  I saw a consultant who i had never seen before and he does not know what to make of my records as they are complicated by having seen several doctors over the years and by problems i had during childhood with my bladder. He has decided that the best thing to do is to send me for a ct scan, which i am still waiting on, that way they can see exactly what is going on. They know the pain in my left kidney is likely not due to reflux as i never had it on the left before. the problem is that according to my ultrasound there is no problem with my right kidney, so the dr and i are very confused as along with reflux i also had  scarring on my right kidney which cannot have dissapeared. I guess all i can do is wait till i go for the ct scan. I have been waiting a few months now for it and although i have not been as bad as i was in my original post i am still in considerable pain most days. i might go back to the doctor and see if anything can be done to speed things up.

Yhurley, it is nice to hear a positive story, having kids is something i worry about as my fiance and i are considering children in the near future, although we have decided not to plan for children until after we find out what is going on with my health.

[YHurley]

I was born with three kidneys and all three were reflux, only one works properly...i had surgery when i was 17 but was told that the procedure isnt perfect and it will still occur...I been lucky to have two kids despite my imperfection.  Drink lots of water at least 8, cranberry juice is good but not too much, and they do have pills to prevent UTI's if you get them frequently, and follow up on your urologist doctor once a year. I been doing this all my life, and now i am 30 years old.  I hate water, so drinking diabetic water isnt a bad thing. Not bad for a woman my age who wasnt going to make it at four, and almost need a kidney transplant at 23. Good luck and god bless

[kirstyo]

According to my doctor the back pressure thing is some sort of swelling, its mild but can still be painful. I seem to have good days and bad really, i can be ok for a few days or even weeks but then maybe have a few bad days after that. This last month i was off sick has been the longest period i have ever missed work so that worries me a little. Yes i do get really bad pains but i sometimes find that walking about a bit actually helps, other times i do need to find the nearest bench lol! For sure its your health that comes first, but thats terrible that you have lost your job because of this.

My doctor is now going to refer me back to my old renal consultant as they just dont know what to do with me, as you know it is unusual in adults and frankly i think i am probably the only person they have ever seen with it (i live on a small island so thats not that far fetched)

What gets me is that i have had a few years without any problems and i guess i got my hopes up that it was finally over. It is nice to know that i am not the only one out there going through this. hopefully our respective doctors can do something for us soon, other than just giving me painkillers mine really hasnt done anything.

let me know how your scan goes

[Lanny89]

Im going tomorow for an ultrasound scan but let me know how yours goes. ive been sacked from my work because they said they couldnt keep me on with all the time ive had off. at the end of the day my health comes first! i feel better knowin theres someone else out there with the same problem. im not sure what back pressure in your kidney means but if you fid out it'l be nice to know?? do you ever get pains that bad that you haft to sit down? even if your in a public place?? i get pains everyday without fail! and its usually when im with friends or out and about, my friends are supportive of me but when im on my own i jus feel silly sitting on a bench lookin like im goin to keel over and die!! lol

[kirstyo]

Yes. I am 23 and was also born with reflux and told I would grow out of it. I had problems right up till a few years ago but have had a few years with no pain but now it is back with a vengence. I have been off work for a month now in terrible pain and had an ultrasound today, obviously wont know much till i go for the results but they said i have back pressure in my left kidney which worries me for two reasons: first i dont really know what that means and second my reflux was in my right kidney i have never had problems with the left.