Hi there. This is my first time making a posting here, I found this website while doing searches on kidney stones. I guess I am looking for advice or any feedback at all - anyone else my age experiencing such discomfort with stones? Please read.
I'm 26 years old and I have been suffering from multiple stones in both kidneys for quite some time. Since December I have had 3 CT Scans, numerous x-rays, ultrasounds, urine tests, bloodwork, and lithotripy during my multiple trips to the ER. I'm honestly back and forth to the hospital with severe stone pain once a week. Once there, my pain is treated and I am released once the pain is managable. Sometimes I am only home an hour or so, and once the IV pain medication wears off I end up back in the ER. I can't sleep, I haven't been able to work, and I'm terrified of the extreme pain that I get while passing a stone. I'm always in pain. There is a constant dull, aching pain I have in both kidneys that never goes away. I'm always tired, and i'm really tired of being in so much pain all the time. I don't have a life anymore.
I've been seeing a Urologist, as well as a Nephrologist. Both seem to think I have all of these stones since they run in my family. Although, they seem to think it is unsual for someone so young to be suffering from so many stones (My first attack occured when I was 16). But the waits in between visits is long, and dispite lithrotripy, drinking lots of water and following a diet plan, I keep developing new stones and my problem is getting worse. It's really upsetting. I'm just desperate for some help, some answers to end this pain. I guess my question comes down to this - am I ever going to be stone free, or am I going to continue ending up in the ER constantly? Is there anything else I can do? I can't take anymore pain medication (I've been prescribed morphine, demerol, and percocet) as they upset my stomach and the nasuea from the pain is bad enough. I'm just at the end of my rope and although I know i'm not alone, I feel so alone.
Any comments would be welcome. Has anyone else went through an ordeal such as this?
I would encourage you to come and visit us on the MSK Medullary Sponge kidney disease forum. Though you may not actually have MSK one of the problems with MSK is that most of us live with both kidneys full of stones. We have learned a lot together about
treating it and some of the problems that living with stones can create!
Here is the MSK forum on this site:
I do hope you will join us.
Here is the link to the healthpages that do have many great articles as well:
We have another group started here, we have a thread started also that is planning to meet and discuss going forward more in the research realm that you might want to join as well.
Hang in there and we look forward to you coming and meeting the many of us who like you live with this difficult disease!
I am dealing with the same issues for over a year now. The doctors don't seem to care currently I have one stone in my left kidney and 8 in my right. I hurt all the time. I feel like no one cares. I know that my husband does, he has taken over handling all the things that I hurt too much to do but he is getting angry with the doctors too.
It does run in the family, my daughter has had two procedures already for the same thing. She is your age. It is nice to see there are other people out here that I can talk to that will understand.
now i know that your case are much worst than mine.
i am 26, female..
i had a kidney stone too..
1st attack was when i am 25.
i've been in ER, also doing consultation with urologist.
my 1st stone going out naturally, but since then i alwas have a pain on both of my kdney..
consulting with urologist, he only said "supposely there should be no pain" - just like that and it didn't help me!
last month i have another attack, and decided to change urologist..
my new urologist help me a lot..
i can contact him on the phone each time i got complicated with my pain, no need to go to hospital, free of charge.
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