Loin Pain Hematuria Syndrome

kibby · Newbie Joined: 10 May 2005 Posts: 12

I am 30 yo M with a sharp pain in the low right side of my back – kidney area. Doc told me that I might have "loin pain with hematuria syndrome". But I had no symptoms at all. Some blood in my urine would be quite alarming, but nothing except this extreme pain. Is my doctor right? Should I go for a second opinion?

neaves · Newbie Joined: 23 Jun 2005 Posts: 11

Yeah, the problem with loin pain-hematuria syndrome is that the major symptom is pain, and pain could mean almost anything. I think it is really hard to tell whether it`s loin pain-hematuria syndrome or not. I`m skeptical about that illness. Never heard or seen a clear case of this syndrome. Loin pain-hematuria syndrome, is it a true or a fad? It`s really hard to tell when pain is the only symptom. I would go for a second opinion, that`s for sure. Maybe you have a kidney disease, or some infection? The pain that you are feeling could be practically anything.

bryanna11 · Newbie Joined: 15 Sep 2007 Posts: 1

Yes there is a syndrome called Loin Pain Hematuria Syndrome and I have it . It is very painful pretty most all the time, you do get a great deal of blood in your urine but not all the time.The Only way to find out if you have Loin Pain is to have a kidney biopsy done which is very uncomfortable and sometimes painfull. I spend some much time in the hospital because the pain is unbearable at times. Almost all the doctors and nurse didnt know anything about LPHS, they always thought I was faking the pain and was there just to get the pain meds, but the pain is very ,very real. If you live in Ohio the best Doctor to go to is Doctor Hebert in Columbus Ohio. He and his partners are the best in this field of medicene. They have done so much research on this and they have done so many different things for people that have LPHS.They used to do kidney transplants or tissue transplants but they dont di that anymore cause it helped for a while but then it came back in the new kidney or new tissue. They did find that it does eventually go away but it does take years . The y do know that it is a young womens disease or syndrome whatever you want to call it, and it by the time your in your 40s it does go away. For now they are doing a trial on some of their patients, where they go in the kidneys and cut the nervse. I just heard about this a couple of months ago so its still in the beginning stages of this trial. Their not doing this on every patient that has LPHS until they make sure it works and to see how long it lasts with no problems to the patient. So in the mean time I have to go to a Pain Doctor for my pain meds. And there are still times i have to go to the hosptial cause the pain meds I'm on cant take care of my pain, so I have to be put on a pain pump for a couple of days or a week have ever long it takes for my pain to die down where my pain meds from home will work again. If there are anymore questions on LPHS or any doubts about it email me at bryanna11@yahoo.com or messenger me at the same thing.

Guest · Guest

[quote="bryanna11"]Yes there is a syndrome called Loin Pain Hematuria Syndrome and I have it . It is very painful pretty most all the time, you do get a great deal of blood in your urine but not all the time.The Only way to find out if you have Loin Pain is to have a kidney biopsy done which is very uncomfortable and sometimes painfull. I spend some much time in the hospital because the pain is unbearable at times. Almost all the doctors and nurse didnt know anything about LPHS, they always thought I was faking the pain and was there just to get the pain meds, but the pain is very ,very real. If you live in Ohio the best Doctor to go to is Doctor Hebert in Columbus Ohio. He and his partners are the best in this field of medicene. They have done so much research on this and they have done so many different things for people that have LPHS.They used to do kidney transplants or tissue transplants but they dont di that anymore cause it helped for a while but then it came back in the new kidney or new tissue. They did find that it does eventually go away but it does take years . The y do know that it is a young womens disease or syndrome whatever you want to call it, and it by the time your in your 40s it does go away. For now they are doing a trial on some of their patients, where they go in the kidneys and cut the nervse. I just heard about this a couple of months ago so its still in the beginning stages of this trial. Their not doing this on every patient that has LPHS until they make sure it works and to see how long it lasts with no problems to the patient. So in the mean time I have to go to a Pain Doctor for my pain meds. And there are still times i have to go to the hosptial cause the pain meds I'm on cant take care of my pain, so I have to be put on a pain pump for a couple of days or a week have ever long it takes for my pain to die down where my pain meds from home will work again. If there are anymore questions on LPHS or any doubts about it email me at bryanna11@yahoo.com or messenger me at the same thing.[/q

I also have "Loin Pain Hemaruria Syndrome" I've been living with this for 12 years. I agree it is very painfull!! Quite scary actually when your pain is worse than severe labor pains and your urine is clearly bloody. I had done and tried everything to take the pain away. The pain is so frequent and severe that you are taking several narcotic pain killers to take the pain away and it just never really does. I remember getting 250mg shots of demerol in the butt and it not touching the pain. My god thats enough pain medicine to kill a grown man and here I am a 110lb woman. No doctor knew what to do for me and I seen several specialists who just kept on giving me more pain killers...codine...hydrocodone...demerol...oxycotin..morphine...pain patches...I went straight up the ladder untill nothing was taking away the pain. Well my god..I had become a drug addict! Constantly every 4hrs pain pills were going in my mouth..not just 1 or 2 but 3, 4, 5, 6 at a time. I had real pain and was going crazy that I could not get enough medicine in me to get rid of the pain..I had to drug myself to sleep. I did this for 5 years before I realized I was a horrible wife and an even worse mom. I checked into a detox and counciling. I had always been anti drug growing up as a teenager. I never even tried a street drug yet I was addicted to narcotics. I noticied that after feeling really bad for a long time, not taking any pain killers made me start to feel a whole lot better! I do have symptoms and sometimes they are severe, but they go away and I can still function. All the poision we take to get rid of pain we have actually makes us feel worse. All these narcotics are horrible for the kidneys yet we take them to feel better. With me..once I stopped the medication I began to feel better and have been feeling great for 6 years. Yes I still have pain and blood in my urine from time to time, but I remain calm and for me I am able to bear it. So even tho I have LPHS..do I believe it's a physical or emotional...well I know I get pain, and believe it is real pain, however I think we can make our mind believe it's way worse than it is! It's called a Syndrome and not a diease because it's not been proven to have an exact cause only symptoms. I believe alot more research needs to be done on this! I'm very uncomfortable that I always have large ammounts of blood in my urine and pain in my side and Im told I have LPHS and a ticket for a legal drug addition!

ryan_cairns · Newbie Joined: 16 Dec 2007 Posts: 1

i have recently been added to the list of people diagnosed with this lphs thing , iv been in immense pain all year starting in my left kidney and now all along the front of my torso, i have had all manner of xrays and scans , ive been passing blood(pure looking most times :S) since march , and also have a white slity looking thing in the bottom of all the samples iv taken to doctors, this would indicate to me that some was really wrong with me but after haveing a nasty little camera inserted in my manhood and pushed thru to my kidney (wich has made the pain worse !!! ) the docs have said there is nothing that looks wrong and that i have this lphs, seems to me like they label alot of people with this syndrome when they dont know what is actuially wrong with someone, any 1 agree or have and good advice for keeping this "syndrome" under control then get in touch with me , ryan_cairns@hotmail.com

musicbaby · Newbie Joined: 10 Apr 2008 Posts: 1

Hello! My name is Patti & I have been diagnosed with Loin Pain Hematuria Syndrome also. THIS IS A REAL ILLNESS. I am the youngest person to develop the syndrome since mine started at age 6 & I'm now 34. Let me tell you that its very difficult to diagnose this because I went most of my life with pain & nobody could find an answer for it. I was 6 when I had my 1st surgery & since they didnt know what to look for they just did an exploratory surgery looking for anything abnormal. My kidney swells at times & I've had a pyloplasty(removing part of the kidney) surgery to remove stones, every test imaginable until finally they removed the bothersome kidney & I was pain free for 18 mos...then it started on the other side!! I went to so many doctors & some said no idea, some said something totally off (I think its just gas! one ER doc told me) but my primary doctor, Dr. Blank, NEVER gave up & promised to help me find an answer. He sent me to Dr. Weisberg in Camden, NJ who is excellent and has done much research in this very small area. I couldn't have a biopsy done because I only have one kidney left & the other failed fast after an invasive test so the thought is that the physical touching of the kidney could cause it to fail & they didnt want to risk my life. He diagnosed me by looking over all the medical history & tests and lastly my urine microscopiclly and he even brought me into the lab to see the problem. Even if the blood isnt visible it can still be there. There were dysmorphic (not round) red blood cells on the slide & it was very clear that I had many. He says much more than he had seen in anyone else. So even though the reason for the pain may not be clear the pain is very real! I don't appreciate the person on here posting to everyone that we should just stop taking our medication because it sounds to me like either she doesn't have a severe case like mine or she doesn't have it all! I'm happy that you could stop your meds...I know my pain is at an 8 easily everyday with the medication. And the way, she wrote that the meds are "horrible for the kidney" please educate yoursellf like I did if you have this...it depends on the delivery system of the medication & each is different. Some are discarded through the kidney as waste & some are discarded through the liver. Its extremely rude in my opinion to give out advice like that to sick people. I've had many discussions with my pain docs about dependency & they assured me that its not an issue for people living with this kind of pain. I only get pain relief from it and nothing more. It has a lot to do with the a person having an addictive personality. Please help yourself by making sure that the diagnosis is correct because it is extremely rare and if you do have it some advice;find a doctor that is caring and understanding and stick with them. Try to always go to the same hospital because they will get to know you and become familiar with your syndrome to help you and will understand the level of care needed. We do become very tolerant to narcotics and will require much more than a person twice our size for the flare ups. And lastly never self medicate. If the pain becomes unbearable (which it will often) always call your doctor to see what to do next. Thats why its so important to find a caring doctor. Dr. Blank has been incredible to me because I've had to call & disrupt many nights & holidays but he remained kind to me and never minded my calls while always hoping we will get to the piont where it only be slight. I hope anyone with this can be as lucky as I am and find a doctor who will look out for you as well as your own family will. One last thing, I read in one of the messages that this goes away in your 40s and there really is no evidence to support that. Even the patients that have undergone an auto-transplant (transplanting your own kidney from its original position to the pelvic area) have redeveloped the syndrome. I know that my doctors have tried cutting off the nerves to the kidney alsi but they always grow back then there is scarring in the area so that cant be done too much. There really is a great deal unknown for this illness so please read whatever you can find on it that is written in medical journals or by doctors not just people posting on the internet. Even the doctors do not have clear cut reasons for the development of the illness or the treatment so you can;t expect a person posting would have all the answers. Good luck to everyone.

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Hello My name is Melanie.
I also and so does my doctor think I have LPHS. I have had kidney stones since back in 1987, At least 16 times now. My back pain started to get more and more severe in 2006. I have been to different hosiptals trying to get help. To numerous specialist in the kidney field, all to no avail. They tell me no stones..there is nothing wrong with you. No blood in urine..so nope again nothing wrong with you. I hurt so bad 24/7, and until someone feels this kind of pain, they do not know what they are talking about. I do not try to even take pain meds..but is not fair to me to have to suffer because of what others think. Including a small group of doctors that only see black and white in the picture. I know it is not in my head. The pain is in my back. I get so tired of my friends and family thinking ok we do not want to hear this anymore..and I guess I cannot blame them. But please just try to picture being in pain all the time..with no relief then you can judge me. I also have a wonderful doctor that thinks this about me too. She has tried and sent me to all kinds of doctors and hospitals for help...to getting nothing but go to a shrink. She is fighting for me and I so appreicate that. I live in Michigan..and we cannot find anyone here to help me. I am limited on income and just cannot go out of state for help. I mean I can go, but trying to find anyone to help me is about nil. I just would like to find more information on this subject and anybody that would like to talk to me on this subject. I feel so alone, and in the dark here. I hope Patti that you continue to get the help you need and bless your doctor for believing in your Illiness. I am sorry you have had to suffer for so long. I just hope there will be somemore advance in this syndrome soon. Does anyone know where I can get some help on this? Let me know and will be happy to get back to everyone that would like to talk...

Loin Pain Hematuria Syndrome

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