Loin pain hematuria syndrome (LPHS)

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

Lauren Runkle – Overwhelmed at 17.

dragonfly1693 -Living with LPHS

Craig – 21 Years with LPHS

Tania – I am 16 yrs old and my doctors believe I have LHPS

Kiki – 23 years old and uncurable

Shery – Answers to my questions…do you have any?

loveandpeace3 – Painful life

Ivy – LPHS….My Story

More stories

More about LPHS

Some facts about LPHS

http://en.wikipedia.org/wiki/Loin_pain_hematuria_syndrome

18 thoughts on “Loin pain hematuria syndrome (LPHS)”

  1. I would like to organize cases of lphs and find a researcher to analyze all the data…if u can help me leave your name and callback number @619 992 2765 thank you and I pray for rest for all of you

  2. you will find us all on face group, we have several support groups etc for people with LPHS. i am in the process of doing a website for people with LPHS to link everyone and everything together so people get the help and support they need. it will also include a list of treatments and meds that work for different people – will keep you posted once its up and running, carol x

  3. My son had loin pain and went undiagnosed for seven months. He has basially thin membrane syndrome with pain that is rare. He went from an athlete to someone who couldn’t even play tag. A conference of nphrologists diagnosed him an prescribed a low dose high blood pressure medicine. It reduced the pressure in the kidney enough to releive the pain. Montifiore Childrens Bronx, NY

    1. My daughter has LPHS but she is not diagnosed yet. We can not find a doctor who knows about this disease. How your son is coping with this disease. Any ney discovery on this disease? Any help will be appreciated.

  4. It took almost 16years and many surgeries that wasn’t needed to finally be told I have LPHS, but I have large amounts of blood in my urine and the pain controls my life. I only have one kidney, and see a Pain Dr. and am on large amounts of morphin and methadome

  5. Hi all got linked up with others having LPHS . only problem is dont have internet have to go to internet cafe to keep in touch. you all in my prayers never far from my thoughts.Love from Cape Town South Africa

  6. Hi all . I to am keeping up the fight to inform and have decided to create an organisation here in south africa that would educate and help raise funds for our plight. At present my first battle is to raise funds for my own operation to have the morphine pump replaced. this is a costly excercise but i believe God will help me while i try to help other . the pump works fantastic i can atleast move around on good days. together with Tai Chi that by boyfriend has introduced me to , it really works try it

  7. I’VE HAD LPHS SINCE 1995 AND EVERY YEAR IT GETS WORSE.THE PAIN,THE BLEEDING,THE LONG LONG DAYS FOLLOWED BY LONG LONG NIGHTS AWAKE.GETTING SICK TO MY STOMACH BECAUSE OF THE AMOUNT OF PAIN IM IN.I AM CURRENTLY ON 60MG OF MORPHINE SULFATE 3 TIMES A DAY AND I DONT EVEN FEEL THE MEDS ANY MORE.DOES ANYONE HAVE ANY SUGGESTIONS FOR ME? I LIVE IN SUN CITY, CALIFORNIA AND MY EMAIL IS JOHNNYEAST81@GMAIL.COM WILL ANSWER ALL PEOPLE THANK YOU GUYS!!!

  8. This illness, and the stages through it and dealing with it, truly makes me appreciative of a format such as this, to be able to talk with others that understand.
    Several years ago I was sitting in class, and felt this abnormally harsh backache coming on. I have had my share of back problems, and new from the get go that this was very different. That evening my folks came over and drove me to the ER. My tests came back showing that I had a kidney stone. I had never had a kidney stone before so I was surprised at the pain. When I followed up with my primary care physician the next day, she explained that they could be quite painful, to drink lots of water, and that it would pass. It did. What occured after that was a mystery.
    Month after month went by, always blood and protein in my urine tests, horrible kidney/flank pain, and around once to twice a month, what I call now an “episode” would occur. These episodes caused extremely worse pain, sickness with nausea and all-over aches, and a basic lethargy that kept me in bed and just about unable to so anything else other than that, lay in bed. This was all a mystery to me, as well as to my Dr. She wasnt sure what this could be either. She began by doing a bunch of tests, and when those didnt reveal an answer, she sent me to my first specialist, a Nephrologist. He did a biopsy on my “bad” kidney, the right one. Although the biopsy was inconclusive, the basic kidney function seemed okay.
    He spoke to my Dr, and they agreed that I should go up to the research hospital, as that would be the place that I could get some answers.
    This is a huge research hospital. I saw a total of 4 Dr’s there. After many tests and visits, they diagnosed me with LPHS. I hadn’t a clue what this was. My primary Doctor didn’t know much more about it than I did. She started doing research of her own on LPHS, as did I.
    Wow. That was my response. Wow. The first stage was nothing more than wonderment of what I had. This second stage was curiosity. I needed to understand what I had just been diagnosed with. After I did a ton of research, spoke more to all of my physicians, the prognosis was not good.
    First, the lack of research and knowledge known about LPHS was few and far between. The very few amount of diagnosed people with it has really limited the research done on it and imformation about it. With that said, the only few things known to try and trewat it, have very, very little effect. Stage three, awareness of my new found fucked status.
    Next was a decision. I could try a transplantation surgery. Little help to none. I could try a transplant surgery. Little help to none. I could just learn to live with it. That’s what was left. Live with it. Damn.
    The next stage, the learning process, that one took a while.
    I had to retrain my mind to remember that even though my mind siad this is what you do, how you’ve always done it, etc… My body was now saying, Oh no you can’t! The learning process was LONG and PAINFUL. As soon as I thought I understood my new limitations, I would push through with my brain, and my body said, NOPE, you pushed too much and too long again…this activity for this long is another, big no no. This took a while. It was a long stage. As a matter of fact, that stage just ended for me.
    Just recently, the next stage began for me. This one isnt so physically painful as the last one, as I now “pretty much” know my limitations and after affects of them, but this one has a profound effect on the feelings. This stage, is the one where you realize that this might be the way that you feel, for the rest of your life. Some people with LPHS get better over time, some do not. This has rally hit hard lately. What if this is it for me…? What if the entire rest of my life, I cant run fo rmore than 30 seconds with my grandbabies, ride on the back of our Harley with my hubby, make dinner some nights, etc, etc, etc, etc…. This realization is like a slap in the face right now.
    For now…I’m done. I’ll have to check back in later. However, and I know you’ll understand this…I am sorry for any and everyone that has to feel the way that I do.

  9. Brandi, Thankyou for writing I am at the end of my rope, I seriously didn’t what to fight anymore I moved from ny to nc and these dr. Suck, in ny I saw the best dr.,dr. Porteny and he taught all his students about my case. I had to move in with my family because I could Not work so that’s how I got to nc.anywayi think u saved my life tonight THANK YOU! From your bed ridden friend!!!!!!

  10. thank you for all of your strong words if my siblings tell me to get over it or how much they understand but I really need to get a job I don’t know what I will do!!They treat this diagnosis like its some kind of scam.I vomit deal with horrible pain and now I have no innsurance..Trying to remain polite and civil is so very diffacult.mornings are the worst I am often awakened with the feeling that I have been kicked in the balls.Flank and abdominal pain and dark bloody urine are daily.If it wasent for all of you sharing this my family would have convinced my I was weak and lazy.Dealing with LPHS without pain meds has been a serious trial knowing this is a real disability has kept relatively sane. Thank you again please continue to share some of us are more than a little lost and the sence of community is a life saver God bless

    1. Amen to your letter.l am just now thinking l am sane.My family has shamed me for years and l am so pissed about them and wish more than anything to support me. They will never be there for me.So sad they miss out.Hope you are better and l pray for relief for us all!Wish someone lived in Dallas to talk and vent to.l also have 3 kidneys.2 are smaller with tubes comming from all.Lost in Texas,Linda

  11. I know this is an old thread but I need help. I have recently been diagnosed with LPHS and I can not find a Pain Management Doctor that will treat me. Once I give them my diagnosis the office says they can’t help due to only doing injections. I’m from the St Louis area. Does anyone have any advice for me ?

    1. I’m Just diagnosed with LPHS too and I from Denmark
      I have had some succes taking Tablets Oxycodonclorid reguarly 5 mg 5 times a Day and 5 mg ekstra at attacks UP to 3 times a Day. And Pacetamol 500 mg. 2 tablets 4 times a Day, it is NOT taking The Pain away but at some point making thinking strait posibel.
      I have an apointment at a Pianclinic in April, but as I am Histamin intollerant to, I am NOT setting ny hopes to High
      Sorry for Any misspelling I have not written anything in English for the last 30 years, but as LPHS information is NOT translatet in to Danish, am bag on track

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