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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?

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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.
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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 _[removed]_ or messenger me at the same thing.
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bryanna11 wrote:

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 _[removed]_ 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!

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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
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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...



musicbaby wrote:

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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My 22 year old daughter has been diagnosed with lphs also. She found Doctor Sobol at Michigan Institiute of Urology in Troy Michigan who has helped her alot and researched the syndrome. You may want to give her a call.
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HiMy name is Jackie I live in Portland, Oregon, I am 43 yrs old Female and I had a kidney biopsy done one month ago.

I ended up back in the hospital a week later. A cat scan found a large hematoma where I had the biopsy done. I was told to rest and I was off work for 10 more days. I still was in alot of pain called my dr.nephrologist who advised to use a heating pad and my pain meds andif the pain gets worse go to the hospital. I ended back up to the same hospital and another catscan. the hematoma had gone down in size a little. They sent me home advising me to rest and not work for 5 days. I am always in pain it seems now in verying degrees. my dr, thinks it may be the pain is musculoskeletal and she is sending me in for another cat scan next week to see if i have blood clots other than the hematoma. My biopsy showed I have IgM Nephropathy that may be a protein losing disease mostly seen in children called Minimal change disease. My drs put me on steroids 120 mg every other day. I did not have any pain before the biopsy but on occasion. Now I have had constant pains since the biopsy. I have not seen any blood in my urine. but the pain in chronic.

If anyone has any advice or suggestion or tests. It would help me out so much. I feel like everyone thinks I am over exagerating my pain level.

Thanks everyone who posted on this site it has helped me not feel so alone
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hi,
Last year i am actively in Gym forming my muscles and the normal people who like to be fit,i am doing that for almost 1 and half year then i have one time early in the morning while passing stool i found a drop of blood came from my penis i get alarm , i ask some of my instructor and they said it is normal, just removing bad cells"that what they said, it get me more worried because it is daily basis now everytime that i pass my stool there is a blood for the last drop of my urine i do the examination for differnt hospital i found that i have Varicucele but thru my research i didnt found that there is a symptoms of bleeding for this case nowi am still confuse if this bleeds cause of Varicucele or something else i am suffering for this for almost 1 year now everyday i see drop blood from it

earl
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I am so sorry for everyones pain. My daughter had a biopsy at Lahey Clinic. The Nephrologist there thinks she has LPH.She was found to have Thin Basement Membrane. Not only does she have pain she also passes "debris" or "protein casts" in urine almost every night- the pain is so bad she vomits. Does anyone else here have that symptom? other than opiats and ace inhibitors are there any other meds anyone has tried ie:steroids, muscle relaxers, anti inflamatories???
Deb
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Hi Debt,

It took several years and many doctors before I was diagnosed with LPHS. I can't remember the last time I was pain free. I was working full time (60+ a week), in a fast paced environment until about 2 weeks ago. I finally just could not bury the pain anymore. My doctor admitted me to the hospital where I remained for 8 days on IV pain meds and numerous tests. I am home now but not much has changed. They decided to release me because the environment was making me crazy. They couldn't keep me in the hospital bed. I may have slept 2 hours a night and not at all during the day. I have large amounts of blood and protein in my urine. I am on narcotic pain meds and steroids but it's not helping. I am unable to take NSAIDS (ibuprofen, alleve,etc) because when I did I started to experience kidney failure. I am 36 5'4" 135 pounds and am taking enough medication to kill an elephant. This condition is enough to make an otherwise very stable, somewhat healthy individual insane. The nurses and doctors at the hospital kept saying that I look too healthy to be sick, or to be in that much pain. My primary doctor has been wonderful in his fight to find a way to "fix" me, but I am afraid that there is no "fixing". I am awaiting results of a kidney biopsy that was done last week. My nephrologist has told me that we may or may not have an answer. I was feeling pretty positive until a couple of weeks ago. I refused to fall prey to the pain that was trying to take over. I really thought "certainly it is not that bad, suck it up and keep going". I am tired and irritated. The worst is not knowing when or if the pain will stop. I have had moments where I did not think it was possible to hurt more, but yet it did. Is the pain stronger, or am I weaker? Ugh, didn't mean to go off on a tangent there but I have been quiet for so long. It is so hard to accept the fact that pain is the boss of me. The pain got so bad that I have trouble recalling the events that led me into the hospital , and of course the pain meds in the hospital make it difficult to recall the first few days I spent in the hospital. I am not sure what happens now that I am home. Do I wait in hopes that this will subside while life goes on? I'm not sure I can do that.
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I am 27 years old and have been having this pain for about a year I have been in and out of the hospitals and have seen many doctors. GI and Urologist I also have had many test done. Just recently I was in the hospital and had been told that I may have LPHS when the doctor I had never seen before came into my room. He just sat down by my bedside and started describing to me my symptoms and pain and than he said the magic words. I think you may have a rare disorder called LPHS soon he begin telling me he had a patient a rew years ago coming in and out of the hospital with the same symptoms as I have and doctors just thought she was there for the pain meds. He said he did the research and found this syndrome and actually started to educate himself on this calling the clinic in Ohio. I know even in my pain the words of LPHS he had said seemed like a boulder was just lifted off my shoulders. I was tired of going in to the hospital and doctors looking at me as if I was crazy I even had one doctor that requested I may want to see a shrink. I know I am not crazy this pain is not fake. I am now I a quest to find out as much information as I can. I do have the horrific pain like if I am going into labor but three times worst it comes and it goes but lately has been pretty stable. I just feel validated that I am not crazy. I wish all good luck and a prayer because I know this pain is unbearable and it is a horrible way to live life. One day there will be a cure as for now my symptoms are the pain the blood in my urine and also kidney stones. I also had gall stones but they removed my gallbladder until now even though there are many suffering from this. I am actually glad that there is some kind of closer for me thank you so much for the replies on this syndrome.
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Hello all you poor people with LPHS. After about a year of pain and tests by exclusion and thin glomular membrane found in my biopsy, my nephrologist diagnosed me. Like most of you say, it's great to find a doctor that just doesn't think you are crazy.
I have 2 questions that I hope someone could answer.
1. Does it get worse as the years pass?
2. How do you keep your job when missing so much work?
I'm having a hard time at work because I'm out anywhere from 1-20 hours a month, depending on the acute episodes. I go in even when I hurt so bad I can hardly stand it just so I won't get fired.
Thanks in advance for any help you can give me.
Natralst
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Thank-you everyone for FINALLY giving me validation. I just sit here and read your posts over and over and cry. I have had gross hematuria for about 8 years now with all of the pain that you are describing. 8 FREAKING YEARS!!! I tell my husband that if a horse was in this kind of pain, they'd put it out of its misery!!!! I, like others on here have tried to "suck it up" and work, but recently after yet another scope, have been in so much pain I can't even function. Lost my job. WOW, I can't believe several of you describe my life perfectly. I have not gotten any diagnosis, but my brother-in-law (who is a Doctor) just brought this to me. So, my journey is just beginning. Unfortunately, I am so depressed that it seems like too much work on my part now. One thing different for me is that mine has progressed over the years to the point that I have to have iron infusions to keep my "feritin" levels up. I become so anemic at times. Treat the pain, throw me some iron once in awhile and life is good!!!! YEAH RIGHT!! For those who treat me. I now have a stent in place due to some trauma from my last scope and it is absolutely miserable. Get it out on April 3rd. For those of you with tremendous pain, a drug called Tordol does help with the pain, but the doctors are very reluctant to use it due to the way it is filtered. It is filtered through the kidneys and can be very harmful. OH WELL!!! Give me relief!!! Just for a day!!! I do have a primary care physician who has finally agreed to give me injections of it. We'll see. Take Care and I would love as much info as possible on the treatment of this as well as a prognosis....
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