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Old 09-25-2011, 08:29 PM   #1
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Join Date: Sep 2011
Location: Anchorage, AK USA
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tonyatumey HB User
Kidney Stone Scar Tissue Issue

I have had kidney stones since age 20. I also have polycystic ovarian syndrome. Because of the PCOS, I gained a ton of weight and had no clue as to why. I lost 62lbs and drank nothing but water because of the stones, yet, I still kept getting them. I have had 2 lithotripsies with stents at the start of my kidney stones. My husband is in the Army (my high school sweetheart) and we've moved around a bit. While stationed in South Korea, I passed a 7mm kidney stone duet to the fact that there weren't any Urologist to see. I ended up passing it in a TMC (Treatment Center) which was basically like a tiny doctors office with lack of medications, etc. WE are now in Anchorage Alaska and the Urologist there wont see me. He told me to drink more water, even though its ALL I drink. I work out, exercise, and eat right because of the PCOS and the fact that we want to finally have kids. I have had blood in my urine for months and have passed several stones, some small. I would head to the ER feeling that OH SO FAMILIAR pain in my back and blood in my urine. The Urologist said that (only looking at a CT scan and not seeing me at all) that they are small that I was passing at the time and should be in no pain. The problem with that is that I was at the ER in extreme pain, how else would I have known a kidney stone was passing if I weren't actually in pain? That was all on the phone, as he wouldn't see me. I was told to see my PCM and he was frustrated that Urology wouldn't see me. He also said that any stone, small or big, can cause pain. Obviously the larger stones would be so much worse, but small can hurt too. He also said that he was in agreement that I wouldn't be in pain at the ER knowing it was a kidney stone, having a CT scan show that there is a kidney stone, if I wasn't actually in pain. The fact that I knew it was passing, felt pain, and imaging that showed a stone, would obviously mean that I AM IN ACTUAL PAIN. This week I am to get a parathyroid test. I looked up information online about stones (as is the only way I can get any information on what on earth to do..I could seriously be a Urologist myself at this point. I've had several Urologist in the past who at least saw me and would treat the pain from the stone) and found a site that stated that a problem with the Parathyroid could cause stone. Parathyroid Glands control the calcium in your body and mine are calcium oxalate stones. I brought it up to my PCM and he was in agreement that we should check that since it had NEVER been checked before. I also have a referral for a 2nd opinion for a Urologist. This isn't actually for a 2nd opinion, as for a Urologist who will actually see me and at least treat me for kidney stone pain. The other concern is that I've had blood in my urine for a long time now. The PCM said that since I have passed so many stones, constantly have cramping, trouble urinating, blood in the urine, and that small stones do hurt, that I could have scar tissue in my ureters and that could be causing urine (even small stones) to back up into my kidneys. I've had a cystoscope (the ONLY think that Urologist did) and my bladder and Urethra look fine. The PCM said that that is great, except that they really needed to look in my ureters and kidneys to see if there is scar tissue causing problems. I wanted to know if anyone has had scar tissue in the ureters or kidney that caused pain? My family has several people who have kidney stones, uncles and grandparents on both sides. The Urologist said that I'm at a "genetic disposition" and that aside from drinking a lot of water and watching my diet, there isn't really anything they can do. I kow that there is a diuretic that works for some, but with us trying to get pregnant, I am unable to take it and they said that it MIGHT work. I'm 30 and we are just ready for kids. I just need to see if anyone has had issues with scar tissue, what it felt like, and how it was dealt with?

 
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