Tag Archives: Loin pain hematuria syndrome

Newly diagnosed with LPHS

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, doctors began telling me they thought that the pain was psychological. I even had an ER doctor look at the number of times I had come in and he basically called me a drug addict and that he wasn’t going to treat me. He suggested that when my body is needing a “fix” for drugs, to just go for a walk. What a laugh, I would love to go for a walk if I could! The pain is so debilitating that the simplest of things cause me agony. My primary care physician finally referred me to the Mayo Clinic in Rochester, MN. I cannot say enough wonderful things about Mayo Clinic! Everyone was kind and did everything they could to help me. I had a complete work-up and I also asked to see a Nephrologist (I had not seen one previously and thought it would be a good idea since the pain is right over the kidney and also because of the constant presence of microscopic blood in my urine.) My doctor was Dr. Marie Hogan and she ordered a renal biopsy, which confirmed the disease. Because of Dr. Hogan, I now have a diagnosis that I can take to my primary care doctor to start pain management. I feel so relieved to finally be able to prove to all of these people that I’m not crazy. I was so happy to find this forum with posts from others like me who understand what I’m going through!

18 years old with lphs

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 out why this was happening to me which lead to many specialist appointments and finally to a nefrologist who diagnosed me i couldn’t control my pain by any medication so they would hospitalize me and push lots of fluids through to flush the kidney out and also they would give me pain meds through the ivy that went on for along time and then i finally got referred to a pain specialist who actually has helped me a lot for the longest time i was taking Demerol 100mg every 3hrs but my body didn’t react well and it gave me seizures i currently take oxycodone 15mg it seems to be sorta working i guess i just want to know if anyone knows of a different medicine i could try or a different kinda therapy that would keep me out of the hospital i don’t know if anyone will reply to this but i hope someone does who had this condition that could maybe give me some hope that this will get better because it really has taken a tole on me I’ve lost my friends its hard for me to go to school and there always calling saying i miss too much but i can’t help it when it bleeds it hurts so much that i can’t go more than anything i would love to have my old life back but i know that’s not going to happen i know i just have to except it and try and move on its just getting to be hard when it affects me going to school and actually having a life so please someone could you just even share your experience with me and tell me how your getting thru it all like i feel whenever i get ahead in life and its going good and i have a good month as soon as i get an attack i feel like it puts me 10 steps behind of what i just accomplished i feel like this disease holds me back from everything i just want to know how to make it better even in the slightest way.

LPHS new diasnos-ee

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 me never to forget or let anyone tell me that I’m not in pain. At the moment I’m on Co-Dydramol but have been on Voltarol which was causing me serious stomach problems. I’m going to my GP on Monday to discuss longer term painkillers or pain management. I have read that a young lady has been taking Duloxetine for the pain, which I’m already on so I don’t think that any more anti depressants would work. It’s great to know that I’m not alone. I’ve already lost my job due to taking too much sick leave during a probationary period. I know I haven’t had it that long, so any advice on useful pain relievers would be great. I’m hoping that some reflexology will help.

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

In Severe Chronic Pain since March 2001

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.

One of the movers and Iwere told to move the pool table into the garage. (This was the last piece of furniture on the truck). Were were near the garage and decided to catch our breath. As were setting the pool table down I heard a very loud pop, almost a thud, in my head. I wasn’t sure what had happened and looked to see what made the noise. I noticed no pain or discomfort at that time. I did not see what could have made the noise so I just forgot about it.

Now that were done with the move I got into the truck and noticed that my leg was numb. I thought for a minuet that it was because we worked so hard to get the move done. I did tell the driver and the guy I worked with but realy thought nothing of it. That was untill we were back at main office. I got out of the truck and my leg and foot were not there for me to stand on. I knew that I was introuble.

Since the accident I have had surgery and tried almost every pain medication known. I have tried physical theropy with little or no sucess. Nerve blocks, faucet blocks, steroid shots, ect. and hoemeo pathic, wich is natural ways for pain and other things, every type of electro shock TENS units, nerve stimulators, muscle stimulators, accupuncture, orthropedics and did get some relief from it but like everything else I developed an amunity to the efects.

I am now looking into how marijuana has had a positive affect on back pain. If there is anyone who could point me inthe right direction could you please contact me.

Loin Pain Hematuria Syndrome (LPHS)

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:

  • LPHS was first identified in England in 1967 among women who were taking birth control pills.
  • Approximately 90% of the reported cases of LPHS are female.
  • LPHS was first noted in men in the 1980’s.
  • LPHS was first noted in the USA in the 1980’s.
  • The first renal autotransplatation for LPHS was done in 1982.
  • Cases of LPHS have been reported from England, Canada, USA, India, Australia, Ireland, Scotland and Germany.
  • The age range for LPHS is from 6 to 50 years.
  • There are approximately 200 cases of LPHS in the world; no doubt, there are more undocumentated cases.
  • Pain attacks due to LPHS can occur several times per week, every few weeks, or every few months. These pain attacks can last from hours to weeks.

    Here are some guidelines to help you decide if you think you need to investigate this problem with your doctor.

  • The condition is mainly characterized by intractable pain involving the kidney and abdominal areas.
  • Microscopic blood or blatantly obvious amounts of it can be seen in the urine. Clot retention can also occur.
  • It is extremely important that physicians recognize the need for adequate pain medication for this disorder.
  • Forcing fluids by mouth or I.V. are very helpful in decreasing the hematuria and in reducing the risk of clot retention.
  • Be prepared to see several doctors and yield to psychiatric exams before you get a correct diagnosis. This is common with any disease that is not common, such as diabetes. LPHS has only been diagnosed in a few hundred people around the entire world, so this is one disease that is not likely to pop into a physician’s head.

    related articles

    Department of Surgery, Royal Prince Alfred Hospital, Sydney, NSW, Australia. agrs@liver.rpa.cs.nsw.gov.au

    Some patients with the loin pain/hematuria syndrome suffer incapacitating flank pain. No effective therapy has been reported. Uncertainty persists concerning the authenticity of the pain and the role of surgery in treatment.

    Forty-six patients with loin pain/hematuria syndrome and intractable pain were evaluated following treatment either by renal autotransplantation (30 patients, 10 bilaterally) or by renal denervation (20 patients, four bilaterally) over a 13-year period.

    All patients had concomitant renal nerve excision and ligation and capsulotomy. There were 37 (80%) women and nine men aged 18 to 61 years (mean age, 33 years).

    Excretion urography and angiography were normal in all patients. Nineteen of 25 (76%) patients in whom renal autotransplantation was successfully accomplished and who completed a follow-up questionnaire were free of pain, including eight of 10 with bilateral procedures.

    The follow-up periods ranged from 1 to 13 years (mean, 8.4 years). Six patients have been free of pain for 10 to 13 years.

    Of 18 patients treated with renal neurectomy who were available for follow-up examination, 12 (67%) developed recurrent renal pain, including four who had pain relief on the other side following previous renal autotransplantation.

    The follow-up period for these patients ranged from 6 to 9.9 years (mean, 8.0 years). Three of four patients with recurrent renal pain following neurectomy were treated successfully by renal autotransplantation.

    The loin pain/hematuria syndrome is a rare cause of incapacitation, predominantly of relatively young females. The pain of the syndrome is organic.

    Renal autotransplantation achieves pain relief in three quarters of patients, but the procedure is often (30%) required bilaterally and has significant complications.

    Renal neurectomy is followed by an excessive incidence of recurrent renal pain.


    What is Loin Pain Hematuria Syndrome?

    by Marc F. Brazie, MD
    Division of Nephrology
    University of Maryland Medical Center, Baltimore, MD

    What is Loin Pain Hematuria Syndrome (LPHS)?

    LPHS is a rare kidney disorder causing attacks of severe flank pain and blood in the urine.

    Who gets LPHS?

    LPHS was first reported in three patients in 1967 who were found to have recurrent attacks of severe flank pain and blood in the urine (hematuria) in whom no other explanation could be found [2]. Since that time, it has been reported in several hundred people worldwide, although it is likely that there are many more unreported cases. It is more common in women (70% of all cases) [3-5], and has been seen mostly in the United States, Great Britain, Australia, and Canada, suggesting a white predominance. While it can start at almost any age, most patients will first develop symptoms in their 20’s [6].

    How do I know if I have LPHS?

    The predominant features of LPHS are recurrent flank pain and blood in the urine. The pain can occur on only one side or both, and may radiate to the abdomen, groin, or inner thigh. Pain episodes may be associated with low-grade fevers and a burning discomfort with urination. The blood in the urine may be overt (called “macroscopic hematuria”), or only detectible on a urine dipstick test or by examining the urine through a microscope (called “microscopic hematuria”). Up to 47% of patients with LPHS also have a history of kidney stones [7], but stones must be absent during pain episodes for LPHS to be diagnosed.

    What causes LPHS?

    As LPHS is a rare disorder, not much is known about the underlying causes. It is thought that there may be a problem with the glomerular basement membrane (GBM), which is the blood “filter” in the kidney, causing bleeding into the kidney tubules. These tubules can then become blocked by the blood cells, causing swelling and increased pressure in the kidney. This in turn leads to stretching of the outer layer of the kidney, called the “capsule,” and pain. Indeed, studies examining biopsies of patients thought to have LPHS have shown that in over 50% of patients, the GBM is abnormally thick or thin [7].

    What should I do if I think I might have LPHS?

    There are many disorders that can cause flank pain and blood in the urine, and as there is no specific test to confirm LPHS, it is considered a diagnosis of exclusion. It is very important to have a thorough evaluation by a kidney doctor (nephrologist) to be sure there is no other cause for the symptoms. This evaluation may involve laboratory tests, radiology studies, or even a kidney biopsy.

    What can be done for LPHS?

    Again, as LPHS is a rare disorder, it is not clear what the optimal treatment is. What is known is that patients with LPHS tend to have normal kidney function, which does not deteriorate over time. Thus, treatment is aimed at pain control and improvement in quality of life. Multiple therapies have been tried, all with mixed results. These include:
    • Medications such at angiotensin-converting enzyme inhibitors (a family of blood pressure medicines which reduce the pressure in the kidney and have been shown to be of benefit to some patients [8]), non-steroidal anti-inflammatory drugs (such as ibuprofen, naproxen, or ketorolac), and narcotic pain medications.
    • Nerve block procedures to decrease the pain signal from the effected kidney, and
    • Surgery to strip the nerves from the kidney, “autotransplant” the kidney (in which it is removed from its normal position and reinserted in the lower abdomen – this has been shown to relieve pain in up to 70% of patient in some reports [3,4]), or in extreme cases, remove the kidney altogether.

    It is best to discuss all the treatment options with your doctor, and ideally as part of a “multidisciplinary” approach involving primary care doctors, nephrologists, psychiatrists, and chronic pain specialists.


    References
    1. Dube GK, Hamilton SE, Ratner LE, Nasr SH, Radhakrishnan J. Loin pain hematuria syndrome. Kidney Int. 2006; 70: 2152-2155.
    2. Little PJ, Sloper JS, deWardener HE. A syndrome of loin pain and haematuria associated with disease of peripheral renal arteries. Q J Med. 1967; 36: 253-259.
    3. Sheil AG, Chui AK, Verran DJ et al. Evaluation of the loin pain/hematuria syndrome treated by renal autotransplantation or radical renal neurectomy. Am J Kidney Dis. 1998; 32: 215-220.
    4. Chin JL, Kloth D, Paulter SE, Mulligan M. Renal autotransplantation for the loin pain-hematuria syndrome: long-term followup of 26 cases. J Urol. 1998; 160: 1232-1235.
    5. Greenwell TJ, Peters JL, Neild GH, Shah PJ. The outcome of renal denervation for managing loin pain haematuria syndrome. BJU Int. 2004; 93: 818-821.
    6. Weisberg LS, Bloom PB, Simmons RL, Viner ED. Loin pain hematuria syndrome. Am J Nephrol. 1993; 13: 229-237.
    7. Spetie DN, Nadasdy T, Nadasdy G, et al. Proposed pathogenesis of idiopathic loin pain-hematuria syndrome. Am J Kidney Dis. 2006; 47: 419-427.
    8. Hebert LA, Betts JA, Sedmak DD, et al. Loin pain-hematuria syndrome associated with thin glomerular basement membrane disease and hemorrhage into renal tubules. Kidney Int. 1996; 49: 168-173.

  • Afraid of pain

    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.

    I look back now and I am so glad I made journal enteries. I often thought how much easier it would be if I just died. Now that I am on a road to becoming myself again, I can’t believe what I wanted to do to myself.

    I have recently had a pain pump implanted. I am having alot of success with the procedure. However it is causing new pains. My right leg is completely numb and I am having awful pain that meds are not helping. They think that my pump is sitting on a nerve. The only way to fix that is to have the surgery done again, moved and have the possibility of it happening on the other side.
    I would recommend this to anyone with chronic pain if you are a canidate for it. It really has given me a piece of my life back. I no longer feel like I am dying. I am able to take my child outside to play and out shopping. I am still living with pain but it is much tolerable. My Lupus still is something I am dealing with daily. But the rare kidney disease is so much better. I am lucky that I have wonderful doctors that have supported me. I was a guinea pig in there office for the pain pump. They knew of how bad the pain had effected me and decided this was my only hope. God bless smart doctors.

    If anyone would like information, I would be glad to answer your questions the best I can. Thanks for reading my story. Hopefully I will chat with those of you who share similar situation. I find it is a stress reliever to know there are people out there that are in my same boat. My husband doesn’t understand so it has been a long, hard road alone.

    twehe@wideopenwest.com
    Tara