My name is Corale Shilling I am the founder of a support group for patients, family members, and friends of people with LPHS (Loin Pain Hematuria syndrome). This disease is very rare. LPHS has been a poorly misdiagnosed illness, and one that for quiet a long time doctors thought it "was in the patients head" NOT!!

Since there has been more research, and this illness is starting to get the proper research that is needed to understand it, more people are becoming diagnosed with this illness.

If you are a patient, family member, or friend of someone that has LPHS and you would like some support on how to cope with this disease, please feel free to contact me at lyrin58@email.com

Our group is one that you will hopefully find understanding, knowledge, and help. I look forward to hearing from you.

Best Wishes
Corale Shilling
Founder of LPHS International Foundation Inc.
lyrin58@email.com

Hi Joe. My name is Tamra and my Hubby is Scott. He has LPHS. The worst of his symptoms have been around about three years now. I would love to hear your story and share ideas if you would like.

I HAVE BEEN TRYIN TO FIND A DOCTOR IN THE NORTHWESTERN NEW JERSEY AREA THAT MIGHT BE ABLE TO DIAGNOS MY DAUGHTER WTIH LPHS. WE ARE SURE SHE HAS IT BUT EVERY DOCTOR WE GO TO LOOKS AT US LIKE WE ARE CRAZY. THEY HAVE NEVER HEARD OF IT. HER KIDNEY DOCTOR THINKS SHE HAS IT BUT DOES NOT KNOW ENOUGH ABOUT IT TO DIAGNOS OR TREAT IT. ANY HELP WOULD BE APPRICIATED

POGZ26@JUNO.COM

My daughter was diagnosed with LPHS at the Cleveland Clinic in Ohio. I would be happy to answer any questions you may have. Just email me bnlfbxfus@yahoo.com. She has been suffering with this since 2001.

My daughter has been suffering from LPHS since 2001. We have fought an uphill battle for many years. I would be happy to help anyone who is dealing with this horrible disease. I am trying to pull together a group through Yahoo to support those suffering from LPHS and their families. Go to the following web address: http://groups.yahoo.com/group/LoinPainHematuriaSyndrome

I have LPHS, my doctors are treating me like the pain is in my head, and they have no concept of how severe and debilitating the pain is. My PCP is trying to ween me off my pain meds, and over the course of the last two weeks I have increasingly become more ambulatory in dealing with the pain, and am constantly laying on the heating pad in trying to receive respite. She says to go to the ER to receive "breakthrough" pain control, which the ER docs HATE when chronic pain patients come in. They treat me like crap, and act as if I am soley a drug seeker. my doctor feels that now I have "over sensative" pain response because of the narcotics I am on for pain control. Only when I have been on high level narcotics have I been able to "plan" activities, otherwise my life is based on whether I am in bed in pain or not.

Sincerely
Marcie S.
Colorado

Hello Marcie,
I have suffered from severe chronic pain for most of my adult life. I have Lupus. My doctors have kindly prescribed high doses of narcotic pain meds. Right now the meds are methadone and hydrocodone for breakthrough pain. Last year, they increased my meds by 50%. Now that I look back on the last year, I realize that my life has not gotten any better. In fact, my memory is gone, I have gotten severe sleep apnea, I am moody and the pain is not any better.

So, I began to read about the biochemistry of the opiate system in our own bodies and from medications. Unfortunately, when we get tolerant to reasonable doses of pain meds, the pain gets worse and the side effects from the increasing drugs get worse. WE have reached the point where the medications are only making matters worse. So, I began to taper from my narcotics with the help of my doctor. I am taking non narcotic pain meds at the same time. I feel so much better. My plan is to get my life back and learn to deal with the pain without the drugs. The drug doses are not helping anymore. They have saturated my system and are no longer helpful. In a year, I will not be taking any narcotics. I plan to be myself again even if it is with pain.
Ann

I was recently diagonsed with this condition. My pain has always been nagging, but tolerable. My doctor prescribed an ace inhibitor. Since starting this medication my pain has subsided. Good luck to anyone out there who may not have considered this option.

AA

I am Tara and have LPHS and Lupus. I have alot of input on many medicines that have helped and some that haven't. I recently just got a pain pump implanted. I would be glad to answer any questions you may have about this. It has been a God send for me. I am about 75% pain free. I have good and bad days but this is wonderful to be able to have a day without pain. I have had LPHS since 2000 and Lupus was diagnosed in 2002. I live in Columbus Ohio and have a great team of physicians. The only thing that sucks is if I have to go to the emergency room for pain, there is only one, which is OSU that will treat me. All the other area hospitals give me meds and send me home! It's a shame that there is no knowledge to this disease. It's very serious and I don't think people understand the pain we go through! Please if anyone has any questions about the pump I would love to talk to you. Or email me if you just need a friend who is going through your same pain. twehe@wideopenwest.com. Tara

My name is Tara. I have suffered with LPHS since 2000. I also have had Lupus diagnosed in 2002. I have been through some many ups and downs with my medications, from not working to making me sick. Hospitals here in Ohio are almost useless. I can go to Ohio State but they make me stay for at least a week whether I am feeling better or not. Recently I had a pain pump placed. This has been a savior for me. I am about 75% pain free. Don't get me wrong I still have bad days where I am in the emergency room but most days I have little to no pain. It took awhile to get the right medication dosage. I go to my pain doctor once a week to get my pump adjusted. You definately do not have to live with your pain. My nephrologist did a study with 13 patients having the pump implanted who had LPHS. All 13 have had sucess. If you have not had this option presented to you I would be glad to tell you about it. With the medication in the pump it is morphine for most, it is so different then taking all of the narcotics. You don't go through withdraw or the ups and downs of the medications. It is supposed to be more concentrated and you are actually getting less medication but it is going right into the spine which is the most effective. It is similar to an epidural. If anyone has any questions about the diseases and my personal struggles I'd love to chat. Or if you want to talk about the pump and the procedure I would be glad to tell you my story. twehe@wideopenwest.com. Tara

hI: I am new here and live in pain everyday, I suffer from dystonia, fibromyalgia, rheumotoid arthritis, scholiosis and have bulging disks in my neck and back. I have not had a day in so long without pain I wouldn't know how to react. What is this ace inhibitor you mentioned, I have never heard of it

ACE (angiotensin converting enzyme) inhibitors are used for controlling blood pressure.

ACE inhibitors are medications that slow the activity of the enzyme, which decreases the production of angiotensin II. As a result, the blood vessels enlarge or dilate, and the blood pressure is reduced.

But how would lowering blood pressure help to relieve pain? Where is the connection here?

I have LPHS. My symptoms manifested unrecognized until I fell into a deep crisis of pain for about 2.5 years. At that time I was suicidal. I have crawled my way back to better health. I learned to avoid narcotics because of the constant constipation that started to wreck my liver. I think my blood pressure medication is critical. You need to learn some more biology about the function of your kidneys. I found the Canadian Kidney Foundation invaluable for help. Contact the American Foundation. Your blood pressure Rx will control the rate & force of the blood coming into your kidney for filtration. If the pressure is controlled you are less likely to have blood trapped in the nephrons, which causes the pain. Another influential source of information is Dr. Lee Hebert in Columbus Ohio. He has participated in the largest studies of LPHS patients. ACE-inhibitors is one of his recommended treatments. I had uncontrolled blood pressure for many years, this contributed to my crisis of kidney pain. Now my pain is no longer daily. But following kidney health guidelines, losing 30 lbs, exercising daily, seeking help from naturopaths & Eastern Traditional medicine have all contributed to better days of LPHS. Susan

My name is Kristie I am 27 years old and was diagnosed with LPHS in October 2006. I am sufferring daily with intense pain. I am getting absolutely no help with this from the specialist who diagnosed me or from my primary care physician who is refusing to write me a prescription for pain relief, implying that it is all in my head even after consulting with the nephrologist who diagnosed me, my primary doctor actually laughed in my face saying that he never heard of this before and had a hard time believing it. I live outside the Saint louis area in Missouri and would be very interested in finding new doctors who may be able to traet me. If anyone can help I would greatly apptreciate it.

To All That I Have Just Read,

My Name is Craig, I am 31 years old and have suffered from this dibiltating syndrome since I was 12. I feel all of your pain. This illness has caused me more grief in the medical community than it should have. When I first developed the condition, I was told it was in my head. I thought for many years it was until an Uroligist in NYC finally saw blood coming from my left Uretea during a Cystography. A break through to me, but it wasn't until May of 2000 that it woke up my surgical team when they performed a renal autotransplantation to find my left urinary track surrounded with scar tissue that formed over the 13 years of extreme pain. My doctor will no longer due autotransplants because of my outcome. It worked for about 6 months just to come back. Now 6 years later I am at where I was before that date. Currenlty, I am treated by a Pain Management Doctor who has been my savor. I am able to some what function as a normal person in life, working and making something for myself. You all are not alone. It will only take all of us to join together, to make the medical community believe that somethings just don't follow the books. For those who have had problems in the ER, go to the hospital VP's. I did and when I had bad attacks, someone from their department would be at the ER waiting if I had to come. From friends in the medical community, they tell me that things are changing; the outlook on pain management. The new doctors are being taught to treat the pain. They are told that if pain is left untreated it gets harder to treat. And for the older doctors, thats where I come in. I have done speeches on this and I hope that I have made a little impact for all who suffer from this illness. My heart is with you all.

Hi my daughter has LPHS we are still working on treatments

My daughter has this as well, interested in talking?

my name is bonnie and i have a boy how is 16 years old and has lphs for the last six year he been in pain and had so many operations but nothing helps here in canada onartio i noew how you feel but as long as we talk about my someone will help

I have been suffering with this pain since I was 20, and it was just diagnosed last year when I was 27. The doctors all wanted to tell me it was pain caused by a bad mattress, muscle exhaustion, etc etc. I saw Urologists who ran every test they could think of and decided it was in my head when they couldn't find a reason for the consistent presence of blood in my urine. It was only after I went to a Nephrologist (kidney specialist) that I found a doctor with a clue. There are periods of time, sometimes months when I am without the pain, but then it comes back and stays with me for days. It used to only bother me in the morning and get better as the day went on, but now it is ever-present. The dr. has me drinking at least 2L of water a day to keep the blood diluted. I have read that this is often present in women of childbearing age on birth control pills. Is this true? Is it the cause, or just an association? I feel for all of you and what you are going through. Just keep looking for a doctor that really listens. You will know when you are in the presence of a true specialist - they will be thorough and be familiar with LPHS.

Good luck,
April

Hello and thank you for your post. I have a 20 year old daughter on birth control pills, who is not in severe pain but has some kind of chronic discomfort. She has had blood in her urine that is not visible but gets detected by dipstick and has had this now for at least a year. She was incontinent the other night and wet the bed. She went to the clinic and she has no bacteria no wbc's, but small protien. And, unbelivably to me, they told her flat out she didn't have anything they could treat!

I want to ask you yur opinion of this, and I really would appreciate your opinion.

Thanks, nerdlady@aol.com

My name is Jess, and I am 22 years old. I just recently got diagnosed with LPHS. I have been dealing with right flank pain now everyday for the past 4 years. When I started to get the pain, I immediatly went to the doctors to figure out what was wrong. Like everyone else I couldn't get any help. No one knew what to think of it. My mother was doing research one day, and came across LPHS on the internet. She decided to send an e-mail to the doctor on the website, and he called my house the very next day. He told us to send all of my medical records to him. A week later he diagnosed me. He diagnosed me, but I have my mother to thank for everything. I am amazed that I came across this website. I thought I was the only one (or maybe thats how the doctors make you feel). I already feel alot better from visiting this site.

I think I have LHPS. I have always had pain coming and going between both kidneys since being a little girl. About 6 years ago I got diagnosed with Polycystic Kidney Disease - does this have anything to do with LHPS.

Hi all

I'm Teresa, 43 years old and live in the UK. I began having Loin pain and microscopic hematuria last March. I did the rounds of tests and in January this year I was diagnosed with LPHS. All other tests have ruled out other causes and my Nephrologist doesn't feel it is needed to do a biopsy in case of causing damage.
Until january I was on Tramadol or dhyhydrocodiene (SP) but my GP then put me on Amitryptaline (SP) I am not pain free, but at least able to return to work part time for now.
Anyone interested in getting in touch

teresarotherham@googlemail.com

Teresa
x

My name is James W. I have sufferd from these painfull thing called LPHS for about seven years know. This is my first time writing about my experiences with it. It seems like every time I turn around a doctor is treating me like I am drug seeking. I have tried everything there is to try and my pain just keeps getting worse. The more medications I take the worse I feel mentaly,physicaly,spirtialy. I have had thoughts of killing myself because I hurt all the time and it seems like the only ones who care are the people who have the same thing I do. I am at the end of my rope here and have no where else to turn so if any of you wonderfull people have some words of wisdom or you can tell me I understand what you are going threw please feel free to open your hearts.

Dear James, I am so sorry for your pain and your suffering. Your story sounds so familiar to me. I too suffer from chronic pain, and have encountered doctors who make you feel like a drug addict. I just simply leave and not come back. However, I have also found good doctors who have been wonderful and are a great deal of help.
Many times I too feel that I can no longer live with this pain a minute longer and I become depressed and sad. It is important to know that depression is a complex disease and needs to be taken seriously. Two years ago I was hospitalized at an inpatient hospital, because I was severely depressed and suicidal.
They were so very helpful, and assisted me in starting to set up a support system. For example finding a pain managment doctor, support groups for chronic pain sufferers, and any other service I might need. So if you are thinking that you no longer want to live, or you are thinking how to do it, please find help at your local hospital or through a suicide prevention hot line.
I would love to provide you with that information, only I don't know where you live.
When I read you posting it made me sad to read how lonely you are and how defeated you feel. What helps me get through these times is to simplify things.
I slow down and remember why I want to live, even though this life will always be with unbearable pain I still have many blessings. Of course that isn't always easy and then I go to my therapist.
I hope that you find the help you need. The right doctors, social workers and so forth are out there you just need to continue to look for them while you continue treatment with the pain center or pain management doctor you have now.
good luck,
Abbie

Dear James, I am so sorry for your pain and your suffering. Your story sounds so familiar to me. I too suffer from chronic pain, and have encountered doctors who make you feel like a drug addict. I just simply leave and not come back. However, I have also found good doctors who have been wonderful and are a great deal of help.

Many times I too feel that I can no longer live with this pain a minute longer and I become depressed and sad. It is important to know that depression is a complex disease and needs to be taken seriously. Two years ago I was hospitalized at an inpatient hospital, because I was severely depressed and suicidal.

They were so very helpful, and assisted me in starting to set up a support system. For example finding a pain managment doctor, support groups for chronic pain sufferers, and any other service I might need. So if you are thinking that you no longer want to live, or you are thinking how to do it, please find help at your local hospital or through a suicide prevention hot line.

I would love to provide you with that information, only I don't know where you live.

When I read you posting it made me sad to read how lonely you are and how defeated you feel. What helps me get through these times is to simplify things.

I slow down and remember why I want to live, even though this life will always be with unbearable pain I still have many blessings. Of course that isn't always easy and then I go to my therapist.

I hope that you find the help you need. The right doctors, social workers and so forth are out there you just need to continue to look for them while you continue treatment with the pain center or pain management doctor you have now.
good luck,
Abbie

Hi, my name is Katie. I have just been diagnosed with this today. I have been in pain for almost a year. I too have gone through every test imaginable. I finally took upon myself to go to a nephrologist who's only logical explanation is lphs. I am just now doing my research on it and I can't believe what a little known-disease this is if it seems to affect this many people. Thankfully I can still, work, function and be a mom but now I'm afraid of how long this will go on and how sever it will be. I've been in pain for about a year as I said before. Has anyone had experience with this getting worse? Does it stay the same or have no routine? I haven't been able to track a pattrn with mine since it started. Should I expect it to get worse?

Katie,
Speaking from experience LPHS has no path. It has a tendancy to get worse around your period and especially with stress. LPHS is notorious for coming along with Lupus. If you start to notice that you have rashes, joint or muscle pains all over your body, unexplained fevers, just start documenting every day your symptoms. Even with just what you are going through now. I have had so many doctors turn me away thinking I was not really in pain and thinking I was just a drug seeker until I happened to find a really good team of doctors after 10 years.
I now have a morphine pump. My pain has gotten worse over the years. Some people are different and may just have a little discomfort and can go about their normal life. Others will live their lives in and out of the hospital. What is a good thing is that they say that LPHS is not fatal itself. You just need to be careful that there are no underlying causes of LPHS like an autoimmune disease. My advice is keep a daily diary so you have proof of what you are doing/eating/pills you are taking/how you are feeling in case later down the road something else should arise. For instance, in my case, I am trying to go through disability in Ohio but because LPHS is rare and they do not consider it a disability I am screwed. I have alot of other medical problems popping up though that if I would have been documenting way back when we could have proved that it was adding to my medical issues and dibilatating to me therefore hendering me to work.
I wish the best for you. I would be glad to share personal information if you'd like. Take care of yourself and just remember that stress is not your friend with LPHS!!!!!
tootsiewest aka Tara

James you make me so sad,
I have been there just so recently. I know exactly what you are going through. There are so many people out there that are willing to help be your friend and support you.

Let me tell you first why I even started having pains and why they thought that I got LPHS. Stress makes it worse as I have said in previous post. (Which could be one reason why you are feeling horrible physically because you are emotionally drained?????).

I found my ex-husband cheating on me with a friend in a strip club while all of my friends were there and did not have the nerve to tell me. I lost a bunch of friends and a husband of 6 years all in one swoop in one night.

Talk about wanting to kill yourself. I thought my world was over. I had not one friend left. No husband. I only had a part time job and I woke up the next day to find my bank account had been cleaned out. I couldn't pay my bills.

I finally got over that in 2002. Re married in 2004. I have a daughter with the bastard that is 9. Well he stopped paying child support and her court ordered health and life insurance. Once again, to say it nicely I'm getting screwed.

I want to kill myself. Every one of my utilities got cut off this week because I have no money to pay for them.

What I have to stop and think about is if I took my life I would be doing it for selfish reasons. Yes I am in pain but my daughter, mother, husband, father and other family and friends would be in more pain in if I was gone. I would miss my daughter's graduation and wedding. I will not let my ex get the satisfaction of having me gone if I can help it! I believe that he is trying to make me kill myself. He knows that stress puts me in the hospital for weeks at a time!

Just think about the good things you have in your life. What would you be missing out on and who would be missing you? Is that fair? Maybe you should talk to a doctor? I went on xanax. It changed me completely. My world has went from a mess to making sense. I was a crier and I'm lucky if I can squeeze a tear out! I'm on other things too but maybe you need a change in meds if you are on something and you are thinking like this?

I hope what I have said makes sense to you or anyone that may have or have had those feelings. Please feel free to write to me anytime you need a friend about anything.LPHS can be devastating and sometimes people don't understand unless they are in your same shoes!
tootsiewest aka Tara

Tara,

Thanks so much for your input. When I was told about this syndrome, I was so relieved to know that at least I wasn't crazy! and that someone actually knew of something this crazy pain comes from. After reading all of the stories on here I feel blessed at least that my case doesn't appear to be severe..yet. I can only hope it doesn't get worse. Right now it creates it's own schedule. I was in pain for about 6 months last year, then it seemed to at least taper off for a while (like a few months). Now it came back about the same as before. They have me on hydrocodone and neproxin since my family doc insists that I should be on an anti-inflammatory. Anyone else have any luck with these? I didn't think it would apply to this sort of thing, but maybe I'm wrong. This is also the same doctor who never heard of this disease until I found out from my nephrologist. And yes - he gave the same cock-eyed look the rest of everyone here has gotten. Like I was making something up or looking for drugs. But thankfully he kept his mouth shut and continued my prescription. I think the journal is a great idea though so thanks so much for your insight. Talk to ya soon!

Katie

My name is Linley, and I suffer from LPHS. I'm 19 years old. I also suffer from IgA nephropathy, adrenal fatigue, kidney stones, depression, and anxiety. I am always in pain and constantly tired. I have problems sleeping, but when I do fall asleep, it's usually for 10 hours or more! My life is in shambles because of it, and no doctors will take me seriously. I am not on any pain medications whatsoever. I am currently fighting for disability help. If anyone has any suggestions for me feel free to send me an e mail.

I just found out about this site today. I was one the first patients diagnosed with LPHS by Dr. Hebert. Like many of you there was a time when I believed (or should I say - was led to believe by ill informed doctors) that I was 1.)CRAZY 2.)A HYPOCONDRIAC or 3.)A DRUG ADDICT (this from several doctors). Imagine my relief when Dr. Hebert returned from reading my biopsy and infromed my that I had LPHS. It's hard to imagine that one would be happy to learn that you have an incurable disease, But knowing that you are not crazy is such a RELIEF!!!
I would urge every one to seek out Dr. Syllable (he is currently practicing in the DAYTON, OHIO area) I can't find his number right now but I will post it as soon as I can. He is an anestisiologist(sp?) how cares for several LPHS patients and is not afraid to agressively tackle your chronic pain. At one time I was taking Duragesic, methadone, percocet,dilaudid and marinol to battle the horrific pain. -(as a side note: Those of you lucky enough to reside in a state that tolerates medical marijuana, DO NOT HESITATE to try it. Marinol is a synthetic form of marijuana, specifically THC, that does more to eleviate the pain than all of the opiates combined!!!).
Now for some good news. Dr. Hebert is currently working Dr.Pelliter(a transplant specialist) to perform Nuerectomies
(they use a scope to go in and remove the nerve bundles from the kidneys. This does not effect kidney function. I had my right side done in March '07 and a year later I still have NO PAIN on that side. I will post my e-mail later for those of you with questions. In the meantime feel free to call me @ (614)-949-4704 and leave your name, number, e-mail or quik message and I will get back to you. I will also monitor this site regularly and will reply to questions left here.
There is hope and all things are possible through GOD. Stay strong and possitive and know that you are in my prayers. Thank you for taking the time to read this.
GOD BLESS, DACRACE

There is hope! contact me at d.a.crace@live.com

Hello all,

I have come across this site and am somewhat relieved to find people in similar situations to my own- not for the fact that others are suffering, but that more people know the frustration of ongoing pain. A little about my story- I'm 21 and have been having kidney troubles for about 5 years now. I've been checked for every imaginable kidney disease- and for about 3 years had a probable case of IgA nephropathy. More recently, I have seen another extremely good nephrologist who has diagnosed me with loin pain hematuria syndrome- had never heard about it before, and ruled out iga nephropathy (i think). I too have had to go several times to the emergency because of pain, and feel like doctors as well as friends/family do not understand or doubt the severity of the pain. I am curious to know if anyone else has had trouble with recurrent kidney infections? I have just returned from the hospital after another course of IV antibiotics. I apparently had an infection for a month and a half but is now clear- that's the good news, however, the pain is still there. I have been referred on to a pain clinic and am hoping to find some answers there in terms of pain management. I am tired of having to take percocet/T3's which is what ends up happening during flare ups. Does anyone know of other pain control options that have been presented to them? I have read a little about autotransplantation, pain pumps, and ace inhibitors being helpful. I still feel like a newbie to the concept of this disease and what information is really out there. Anyways, enough about me. I would be more than happy to be in contact with anyone else who shares in this pain that never seems to end- feel free to send me an email. Best of luck to you all.

-Mel

melissa_reimchen@hotmail.com

Hi all - I too am so sorry for all of your discomfort. I am currently going through severe, severe agony, in and out of the hospital and have recently had a stent inserted for stone passage (but have no stones!!) I have been told I have bacteria, high white blood cells and hydrophrenosis. Does anyone with this disease have hydrophrenosis and infection??? I would like to discuss this with my doctor before I go through anymore testing as I have been through the ringer!! Thank you so much!

Hi everyone sorry to here about you/ your famillys illness.

I too have LPhs

After 2 and a half years at the renal clinc i have just been diagnoised with LPHS. This has been going on since i was 17 at first they thought i had Wegners diease's. I was really frustrated as no-one had a clue what was wrong with my kidneys. The only way to treat this is a few options one is to put you on really really strong pain killers that can make u drowsy. Two send u to a pain team at the hospital who can give you medication for your nerves or three cut the nerves too your kidneys so your body cannot feel the pain.

I would like to get in touch with other people who have LPHS or who's members of there family have it. So we can give each other advice on what treatments do and do work

Thank you and good bless

Robyn

cheeky_devi1@msn.com

so i see my mom has been on here before... my name is brianna and i have lphs. i am only 17 years old and i have been dealing with this pain for almost 5 years now and i am having a hard time putting up with is anymore. i finaly found a doctor to diagnose it and now he is doing nothing for me. i have been looking into the autotransplant but i can not find a doctor to do it for me. if anyone knows a doctor anywhere that could help me i would appreciate it more than you will ever know. i also have a bladder disease so it adds to the pain and makes things worse so any help would work for me. i have been coping well with these diseases but now that i am in college its detting to hard for me to handle on my own. email me if you could help me out or would just like to chat about this disease that we are all fighting.and good luck to everyone else with dealing with this dreadful pain. pogz26@juno.com

I was just diagnoised with lphs yesterday. I have been suffering with this for 5 1/2 years. Many Uroligist, Obgyns, GI dr. Dr's. telling me that it is all in my head giving me meds that made me feel even worse. I live in the State of Washington, so fortunatly I live close to OHSU (Oregan Health and Science University). My primary Dr. told me to go there since none of the Uroligist that my insure covers would help me. I went to see a Uroligist by the name of Dr. Fuchs. After reviewing my records and all the test the other dr's did he gave me my diagnoises. He is recomending that I have the renal-autotransplantation. I am very nerveous about having this surgery. But at this point I am willing to try anything to get rid of the pain. I want my life back if at all possible. If anyone out there knows anything about the renal-autotransplantation please email me @ helga5757@comcast.net. thanks helga

I got diagnosed with LPHS about 2 years ago, I know how frustrating this entire process is & I understand the desperation in just finding a way to end it.
I was told that the auto transplant was my best chance to ever feel better, however something in my gut just told me that it wasn't an option for me. After reading up on it, finding the name of & speaking to Dr. Hebert (Ohio State University Hospital - if you have LPHS you NEED TO CONTACT THIS MAN & GET HIS INFORMATION PACKAGE SENT TO YOU BEFORE YOU GO THE ROUTE OF AN AUTO TRANSPLANT) I was elated that I didn't get an auto transplant. Yes, I know the pain is unreal... I know there are days where I literally wish I could claw my own kidney out of my side... but would you be willing to risk kidney failure, dialysis & phantom pain for less then a 25% chance that it will actually work???
From what I understand about my condition is that my membranes in the kidney are too thin, my body isn't naturally producing some form of collagen so everything is getting plugged in the layers of membrane while trying to filter, most of this has come from myself & my family reading up trying to figure out why I have this constant stabbing in my right side for the last 4 1/2 years. No doctor has really been able to explain it to me, as I don't think there is much information to give.
However... Dr. Lee Hebert was BY FAR my angel throughout all this & for anyone else that feels they need an answer that wont cause more problems in the end - know that there is a NON INVASIVE, LOW RISK, HIGH SUCCESS RATE option.
I haven't made it back for the treatment yet, as I am from Canada & don't have insurance in the US. However when I do I will update. In the meantime I have actually found Korean acupuncture cupping on my back to provide some relief.
I'm obviously not a doctor... but I have tried to educate myself as best I can on the condition that has come to affect every aspect of my life, so if you have any questions feel free to contact me at cathy_dmitroca@hotmail.com
Good luck!!

hi joe,
my name is kirsteen and i have just been diagnosed with lphs and a dillated ureter. like you am intrested to speak to other people. everyday i wake up in painand go to slep in pain. it took 5 years and alot of operations before a professor finally read alll the signs of lphs and got diagnosed. i would be greatful to hear back from you or anyone else who knows what it is like not to see the light at the end of the tunnel.
my emil address is totaly_tweety@hotmail.com
thank you
kirsteen

I WILL BE AS BRIEF AS POSSIBLE.
I AM A PATIENT WITH AN ADVANCED OSTEOPOROSIS AND I AM LOOKING FOR A RADICAL TREATMENT FOR MY PRESENT CONDITION
ALL MY DOCTORS PRESCRIBED ME THE BONIVA AN LET ME UNDERSTAND THAT IS A TERMINAL DISEASE !!!!!!!
PLEASE LET ME KNOW AS SOON AS POSSIBLE WHAT I CAN DO

THANK YOU

I too have been through hell and back with doctors on this. My nephrologist is a godsend simply for the fact that he knew enough to diagnose this. Everyone else treats me like a drug addict when I'm telling them I don't want to take more meds. Something I came across though in last few years with this: I am addicted to tanning beds in the summer. But what is interesting is that my pain seems to subside or at least it gets much less severe in the summer. Last year around fall I stopped tanning and winter cam and I was in agony every day for six months. But as soon as spring came and I started tanning again, the pain seemed to subside a little again. Has anyone else tried this at all. I am curious because doctors think I'm nuts but there are studies out there that show UV light is one of the only ways to get Vitamin D. And if you haven't tried this - it mihgt be worth a shot - It only seems to subside once I go frequently and for a longer duration of time so it is an accumulated relief. Let me know if anyone has questions about this: ktgiffin@comcast.net

I'm actually sitting in the ER as I type this. My wife has been in and out of the ER for years with symptoms similar to kidney infections or kidney stones. But every test they run comes back negative. We had visited a nephrologist and were about to do a kidney biopsy and she got pregnant. She really didn't have symptoms during her pregnancy. But then this last week, the pain has flared up. I told the ER doctor about this possible diagnosis and he had never heard of it. So I'm wondering what is the best approach to get the final diagnosis? What are the best treatments? Does anyone know if there are any doctors studying this? I would travel anywhere to visit a doctor who could give us some sort of hope on this. Feel free to contact me at webmonkey020@yahoo.com

My son suffered from LPHS. It was a process of elimination.
After 3 yrs and many hospitals and surgeries, he finally had a autokidney transplantation at the Mayo Clinic in Rochester. 4 yrs later doing great!