For most of my years with Loin Pain Hematuria I kept ending up in the hospital because of uncontrolled pain. I was probably prescribed every narcotic possible … tried many different types both pills and patches. It was not until my regional hospital started a subcutanous IV lidocaine pain program , combined with methadone that [...]

I am 47. My first signs of a problem was at age 19 with high blood pressure. Then at age 27 with blood in my urine thru-out my pregnancy. Next at age 33 at conception of my third pregnancy with a very dangerous bacterial strep infection and pain mostly in my back. Then at age [...]

Yesterday I was diagnosed with LPHS as a 28 year old female. In 2007 I was also diagnosed with endometriosis and have since had 4 surgeries to remove nerves and the endometriosis that has grown rapid in the right side of my body. I always had kidney pain, on the right side, that I just [...]

Since he was about 14 years old we have been trying to find out what is wrong with our son. He is now 18 years old and we have finally found out what is wrong. He is an athlete and favorite sport is football. He has been living with this severe, chronic pain for soo [...]

Several years ago our daughter Sarah began to consistently complain of stomach pain which radiated to her back. Doctors were unable to diagnose it, and eventually dismissed her pain as a teenager’s attempt to get attention from her parents. Sarah went to several doctors before we found Dr. Henry Rosas. After one careful examination, he [...]

It pains me to say this and I doubt any one will believe me, but those that have LPHS and are getting it now are luckier than those of us that got it 10 years ago. Mine began when I passed out in paleontology class at University – I was taken to hospital and told [...]

As a child had massive migraine headaches at age 3 which continued into adulthood until I had my child. Also from age of about 8 had start of problems with cystitis of the urinary bladder and a sometimes a distant ache in the kidney area. Kidney infections began in my early 20′s. In 1991 had [...]

My name is Melanie, I’m 29 and I was diagnosed with LPHS in October of last year, after a 3-4 year struggle with doctors and hospitals, hundreds of tests, 5 surgeries, and living in horrible pain. Unfortunately, I’m still in constant pain and feel like I am just at the end of my rope. I’m [...]

Carol Crombie DOB 21/05/83 I have had LPHS for 10 years now. It started when I was at college, 18 years old. It started off with just a niggling pain on my right side. I was training to be a beauty therapist so just put it down to being on my feet for too long [...]

Well I wish I had better news. Unfortunately, I have now been diagnosed with LPHS of my native right kidney (Native because both my kidneys are on my right side because of an earlier autotransplant). I started showing symptoms about a year ago and they progressively got worse. I am now at the point that [...]

Hi everyone, My diagnosis of LPHS was just confirmed today. It has been an agonizing year as my symptoms began in January of 2010. I am 29 years old and I have been through many doctors and many trips to the ER for my terrible right flank pain and nausea/vomiting. After having a thorough work-up, [...]

I was 18 years old the 1st time I actually have blood in the my urine, my pain started 14 years old. It took me 30 years and several surgeries to get to a diagnosis. My surgeries included several d&c, a tubul (which really helped the pain) an partial hysterectomy, gall bladder removal, gastric bypass [...]

My girlfriend Melanie has been going through this also. She has had multiple hospital visits, doctors visits, even alternative help (i.e. Reiki, acupuncture amongst other things) and nothing is working. She has been told 1000 times “Its all in your head!” To make matters worse, she is a RN at a hospital and they flagged [...]

Four years ago the nausea, commuting, erratic blood pressure, weight gain and blood on the toilet tissue started. My primary was wonderful but could only treat each symptom. I was already on 8 vicoden a day due to a serious neck injury so I don’t remember the flank pain. I had cystography but my doc [...]

My name is Jennifer Gresham. I HAVE HAD LPHS SINCE 1994. I HAVE HAD EVERY TEST RAN BUT NOTHING. SO NOW MY LIFE IS PAIN PILLS JUST SO I CAN FUNCTION. IT COULD BE WORSE, I JUST THANK GOD FOR LETTING ME WAKE UP EVERY DAY. I CAME TO THIS SITE TO TALK TO OTHER [...]

It started out when i was 16 and i got a really bad kidney infection so i went to the hospital and it was treated and everything but ever since that one kidney infection i started having blood in my urine and on top of the blood always getting infections no one could ever find [...]

Hi, my name’s Becca and I have recently been diagnosed with LPHS. It was initially thought to be a kidney infection, but my GP confirmed it was LPHS after he had diagnosed a similar case a few years ago. I had blood tests, ultrasounds etc. done and all tests came back normal. My doctor told [...]

My name is Amanda-Lynn. I’m a Canadian teenager. There’s nothing to special about me. I’ve pretty normal and live a typical, calm, quite type of life. And the past year has completely changed the way I look at things. In 2009, I was diagnosed with H1N1, it was a though recovery and a scary bout. [...]

Hi, my name is Robyn but my friends call me Cutsnake. They started calling me that when I was a teenager as I was ‘mad as a cut snake’… However, things have changed alot since those crazy days. When I was around 20 I was diagnosed with LPHS after having spent the previous 6 months [...]

After six years of near constant kidney stones – at least that’s what everyone thought – my doctor diagnosed me with LPHS. During this time I have lost numerous jobs, my house, wife, etc. You know the old country song. I recently moved back in with my parents, which has been a hit to the [...]

My name is Katie and I have been dealing with LPHS for 3 years now. I have been to several large hospitals in the central Pennsylvania area where most doctors seem sympathetic at first and then dismiss me after they realize they have no answers. I don’t understand why none of them ever research it [...]

Hi , I dont know if this is posted properly but we will see . My name is Erin Walter. Im 19 and from New Zealand. I have suffered with LPHS for five years now .

Hi,

I am in London, England and this has hit me too. On June 6th last year I had an episode of frank haematuria and went to hospital, they suspected a stone but after many tests and a ureteroscopy, I was diagnosed with LPHS and sent home with painkillers…practically written off.

Loin pain hematuria syndrome, also LPHS – is a very rare condition which predominately affects females. Described as combination of unilateral or bilateral flank pain and microscopic or macroscopic amounts of blood in the urine that is otherwise unexplained.

One theory proposes that it is caused by a thin glomerular basement membrane and red blood cell (RBC) renal tubular congestion that leads to swelling of the kidney and distension of the renal fascia resulting in pain.

Stories

Kat – Overwhelmed and in need of advice

My name is Ivy Goss. I am a 37 year old mother of 4.Recently I was diagnosed with a disease that is very uncommon; Loin pain-hematuria syndrome. Not much is known about this condition. There are no known cures. Once known as idiopathic hematuria, LPHS simply means you have blood in your urine, and pain in the kidneys and, or lower back, with no known explanation.

My mother and sister have the same symptoms, yet no diagnosis for the condition. They live in Pennsylvania. I live in Washington State.

I was diagnosed with LPHS at the age of 16, I am now 18. Luckily I didn’t have to go through a lot of doctors, my mom also has LPHS. She knew exactly what needed to be done. LPHS has changed my life so much. I can’t do the things normal teenagers do. Because of my age my doctor won’t give me any pain meds that work, just tylonol 3.

Besides my mom, I don’t know anyone who has this. When I found this site today it made me feel less alone. Less of a freak.

from Lauren (laurenrrunkle@yahoo.com)
Overwhelmed at 17.

I think talking to people that have pain just like I do and understand the way I’m feeling will empower me. I was just diagnosed with LPHS in October after about a 1 and a 1/2 of not knowing what was happening. Kidney stones were what started the process off and I had several procedures for that and some spinal injections to try to alleviate the pain but it didn’t work….
http://www.lifeinpain.com/node/34767

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from Melissa (cloe_90210@yahoo.com)

I just found this website just recently and I think talking to people that have pain just like I do and understand the way I’m feeling will empower me. I was just diagnosed with LPHS in October after about a 1 and a 1/2 of not knowing what was happening. Kidney stones were what started the process off and I had several procedures for that and some spinal injections to try to alleviate the pain but it didn’t work. I have some good and bad days but mostly bad days.

About six weeks ago, I found this wonderful site, it was and is still so very helpful to me. I’ve read so many of your story’s, if not all, of what you have said about LPHS. I was diagnosed almost 2 months ago. I’m 58, but now have realized that I have had this disease for many many years. I can’t count how many doctors have told me “there’s nothing I can do for you.” Or MY ABSOLUTE FAVORITE “Maybe you should seek some phychiatric help.” Knowing now that I actually have something wrong with me is a relief, but for it to be a rare kidney disease, only confuses me more.

Hi, my name is Kat. I’m 34 and was diagnosed with LPHS a couple months ago after a biopsy revealed thin basement membranes — and seemingly every other test known to medical science showed nothing more telling than “hey, there’s lots of blood and stuff in your urine.”

hi i’ve been on this website for around 3 years and i have made some great friends who understand what i’m going throught. i have had LPHS for 6 years now and am still uncurable. if anyone wants to ask any questions feel free to email me. its totaly_tweety@hotmail.com. . i also want to tell people about a fanatastic doctor who is helping my surgeons even tho he lives in ohio and i’m in scotland. his name is dr herbert and he is at ohio uni in research.

My name is Tania, I am 16 yrs old and my doctors believe I have LHPS (although they are still checking for other possible diseases). I live in a private athletic boarding school miles away from my family and am finding it extremely difficult to get through this health issue by myself. Although I know my parents don’t know what I’m going through neither does anyone at my school, my friends, my roommate, or any of the staff members. I feel very lonely and alone at school. The pain is so unbearable and I am always scared for it to return.

Hi,

I live in NY and have an 11 year old in the process of getting diagnosed with LPHS. Her doctors are great but they do not know much about the disease and she is in constant pain and in and out of the hospital for pain management.

She misses a lot of school and it does interfere with her social life. It is very frustrating as a parent to see your child in chronic pain! Does any know of any doctors in NYC that are familiar with LPHS?

For parents whose kids are diagnosed with this, what have you been doing to support your child?

My Name is Craig Silko. I have been suffering from LPHS since I was 12 years old. I was actually diagnosed when I was 17 because it took so long to rule out every other possible medical reasoning behind the constant pain and blood in urine. I have been treated with many medications but none actually rid the pain completely.

I am a 43 yr old female with a long history of kidney stones going back 18 yrs. 2 yrs ago I started having chronic left sided kidney pain with the same type of symptoms as the stones however no stones. It has taken me the full 2 years to convince the medical community I am not a drug addict nor am I suffering from a mental disorder of any kind. I am currently being treated by the pain clinic in my area and along with oral narcotic medication I am getting injections into the nerve area around my kidney with long acting anestetic medication.

hi I’m 21 years old and 5 weeks ago i was diagnosed with lphs. it took the doctors 5 years and 17 ops to finally diagnose me.

i don’t see how doctors can leave a human being in pain as its against there Hippocratic oath. if i was an animal they would put me down as I’m a human i have to live with the pain but i dont think i can.

i am looking for people who know what i am going through because i need to talk to them . right now there is no light at the end of the tunnel.

Hi my name is Brian and the severe chronic pain has been a part of my life for seven years. I worked with a moving company. We were moving a family into a very large house they had built and was now compleated.

Hello everyone,

I was wondering if any of you have tried acupuncture for the treatment of pain and bleeding in regards to LPHS. If you have, I would like to hear from you on whether you had success or not. I have had 5 treatments where is she trying to focus on the kidney itself. It is still hard to tell if it is working or not. Any help would be greatly appreciated.

Hoping to hear from someone who could be helpful.

Helene

Loin Pain Hematuria Syndrome (LPHS) is an extremely rare disease, where there is unexplained flank pain and Haematuria. Often misdiagnosed as a hypermobile kidney has the same symptoms. This is poorly understood condition for which specific diagnostic criteria are lacking.

Here are some facts about LPHS:

I was looking around on the web because I was diagnosed with LPHS only about a month ago. I thought I’d add my story! I’m only 16, and I’m not really sure if that’s young for this condition but I’ve been suffering from it for 5 years. I had my first kidney stone when I was in 7th grade and from then on, the pain just got worse. I developed more kidney stones but the doctors kept saying they weren’t causing the pain and that I was faking it. Of course, my Mum believed me and I was furious. Doctor after doctor had no cure for me and we were starting to lose hope… Then we moved. I use to live in P.A but in June of this year, 2006, we moved to South Carolina. My pain started getting worse and became chronic. It was so bad, I had to stop going to school and now I’m being homeschooled. Again, we kept going through doctors when finally we met a kidney doctor who said everything I’m feeling sounds like LPHS. We were relieved! My Mum even started to cry! He did a few tests and it turns out that that’s what I have.

My name is Joy and at 39 my life is far from a joy. Amoung a multitude of other health issues, about three years ago I began to have blood in my urine and a nagging constant pain in my right loin region. I was sent to many specialist and endured many tests to no avail. Having a history of major depression and bipolar many of the doctors seemed to allow themselves to write it all off as an extension those somehow.

My name is Tara and I am from Ohio. I am 29 years old. I have a daughter that is 8. Everything she knows is mommy being sick.

I have Lupus and Loin Pain Hematuria Syndrome. It struck me in 2000. I had several kidney stones and had to have surgery to remove them. Ever since I have had dibilitating pain. I went to many urologist and they all told me the pain was in my head. went on antidepressants and began thinking maybe it was me! I met a wonderful urologist who said I was the first patient he had diagnosed with LPHS. That’s when all my medications started being prescribed. The pain was not being taken care of. I could barely get out of bed. I was vomitting every other day. I had lost 30 pounds in 4 weeks. I slept 20 hours out of everyday. How could I take care of my daughter? My pain was not my first worry but my daughter seeing me that way and worrying what kind of chances she will have in getting these diseases. That thought just killed me. My depression sunk even lower and I was going through a divorce. I noticed I was a totally different person and hated it.