Loin Pain Hematuria Syndrome

I just read a couple of posts that weren't on here when I first submitted mine. There are a couple questions that I read from others that I would like to answer from MY experience.I have not had relief in 8 years. The only medication that even touches my pain is an anti-inflamatory drug called Tordol. I understand it comes in pill form, but I only receive it through injection or iv. My doctors are very reluctant to use it though, but do when the pain is clearly too much to bear. I have been on an "ace inhibitor" for approximately 6 of the 8 years and the only change has been that my B/P is stable. My condition has increasingly gotten worse over the years, requiring iron infusions now. I have established that laying down OFTEN gives me some relief from the terrible pain. Sitting at my computer for more than 10-15 min increases my pain. Walking, or even standing for any extended period of time increases my bleeding and pain. As far as working, I have worked, but recently have acknowledged that it's no longer an option for me. It's a very hard fact to accept, but after several years of my condition getting worse everytime I go back to work, I have to think about the consequences now. I see that this particular illness doesn't get alot of interrest, so I hope that I can be of help to someone beginning their journey.

Hello there,
I'm a fourth yr medical student who saw a pt at the hospital this evening. She had an EXTENSIVE history of Abdominal pain radiating to the back for 4 - 5 yrs. Also has hematuria but it's microscopic (she denies seeing any blood in her urine so far but endorses having multiple urinalysis results come up as having RBCs and blood). My question to those who have this syndrome is this:

Do you typically know that your pain is from the flank region or do you feel like your pain is in your abdomen and moving to your back. My pt came in w/ chief complain of pain in abdomen but described her pain as starting on the Right side and radiating to the Left side and entire back. She does says it feels like a "combination of menstrual cramp + child birth pain". sounds similar/familiar to anyone on here? I personally am leaning towards the diagnosis of LPHS eventhough my residents have never heard of that, and I myself just got to it this evening after seeing my pt and wondering what was going on with her.

Thank you guys.

I am 51 year old female with a medical degree. I have had microscopic hematuria, never frank hematuria, since when I can remember which was worse during pregnancy. The pain, though severe, has been episodic. After ruling out everything ~15 years ago I was diagnosed with LPHS which I ignored as it only described my symptoms. Over 20 years I have had about 10 to 12 episodes of pain in the right flank. I have had surgery due to misdiagnosis of this pain.

This time, however, the pain is much worse in the right flank (always). I also have pain in my back, severe and centered at S1-S2 (sacral area)- it is not to one side or the other. It is likely referred rather than radiating pain. I avoid pain meds as much as I can due to the adverse effects and addiction potential but by mid day the pain starts becoming worse and generalized as I am working and reflexly reacting to the pain at which time I will take something.

As usual urinalyss abnormalities are there and the scans are all normal as is renal function (I have lost count of scans done so far!!). For the lack of a better diagnosis I am willing to consider LPHS but have not read about episodic pain in any case. My question to all those who have suffered this disease- has it been episodic pain for anyone and has anyone had back pain centered like that?

I have started myself on ACE inhibitors and am curious- how many people does it help and which ACE inhibitor works better than others? Thanks for your help.

Hi, I am a nurse (LPN) and have done some research on LPHS, since I had been diagnosed with it about 6-7 years ago. I too have all the symptoms: flank (Rt side)& loin (Rt side) pain, and blood in urine. I am on the Fentanyl patch, which seems to help most of the time, but I have side effects like; sleepiness, insomnia, etc. To answer some questions: I have noticed when reading and communicating with others about it, that the symptoms, while most are the same, can vary according to each individual. The pain is either intermittent or constant, some have severe episodes and others not, some experience pain in the abdomen and/or groin that radiates to the side or back, while others get it in the back or side only, different medications help in different ways to varying degrees, and some have had procedures that have helped for short term, while others have had no luck with anything that has been tried. In my case, I too had many tests, seen many doctors, and experienced those who think it's all in my head. However, I have been lucky that my doctor (an internal medicince/family practictioner) is and was the kind to fully research a patient's symptoms and possible diagnosis, rather than just going off of what they have previously learned only and blowing it off as something else. She, my doc, even referred me to two nepherologists (kidney docs). One locally and another who was in a major hosptial three hours away, and both agreed with her diagnosis. This got me to a final diagnosis, but didn't help much with the actual syndrome as it is one that is rare, not enough research to do more for patients, and is still baffling most who have done research it. From my understanding and research done, it does not have a particular cause (at least not found yet) and can go into remission (like cancer) but it is not known when it would happen or if it will happen. I am looking to see if there are new procedures done to help with LPHS, but do not have the resources to find out, since the only place to get updates is on the internet, from others experiencing it, and that's if they share it on the internet. I wish there was more being done about it, to get it out there to all medical doctors and more research, so that there is more that can be done to help those of us with it, but one can only hope. I am not an expert, by any means, and do not have every answer about it, but I am willing to answer what I do know or have learned. I know that I may not have answered some specific questions, but like I said, this is a sydrome that varies with each person, as far as pain and relief, and I know we all want to know we are not alone with this. I wish everyone well and hope there is some type of relief for you all. I understand what you are going through and wish everyone the best. ;-)

Thanks for your post, Gina, it is very helpful. I started myself on Atacand (candesartan) 16mg BID, an ACE inhibitor, and am responding nicely for which I am grateful. I did find one recent article that provided hope about future research- Endoscopic Findings in Loin Pain Hematuria Syndrome: Concentric Clot in Calyceal Fornices. Other than that not much work going on in this area. I guess the researchers have to first believe its not in our head!

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I had LPHS in 1994. Like most people, mine was a diagnosis of exclusion. I am a kidney stone former. Lucky for me, my family physician was a friend. Usually, the symptoms are mistaken for drug seeking behavior. I too had numerous visits to the hospital (at least monthly) for pain control. I was on time release morphine and a similar narcotic for break through pain.

I started reading about what a Dr. Chin in Canada had to say about it and the went to a leading hospital in the state. After a psych exam and several tests, including saddle blocks (which do work albeit only a relatively short period of time), and other tests too numerous to mention, I needed something that would end the suffering.

After almost a year, I was taking so many narcotics, you could actually smell them - even after a shower from your sweat, I decided on auto transplantation. Best decision I ever made. Now, no pain and just a yearly renal scan (you need to be laying on your side or the transplanted kidney will lose 1/3 of its function) just to make sure no stones as I would feel no pain until it hit the bladder (or near it, not sure of that).

I am now healthy and pain free, with BOTH of my kidneys functioning. The surgery and rehab were excruciating but not the same type of pain as before. I weaned myself of the narcotics for just about a week when on a Thursday, I decided to dump them in the toilet and went cold turkey. It wasn't pleasant especially for the two days I slept in the bathroom.

There is hope and my approach may not be right for you at all. Like some people have mentioned, I tried ACE inhibitors (even enduring the cough) and many symptomatic type medications. My advise: find a good doctor who understands and let him select the nephrologist.

Good luck.

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Hormone replecement therapy for my menopausal symptoms seems to have also reduced my need for ACE inhibitors to manage my pain. Which is interesting for I have hormone dependent headaches. So the right balance keeps me pain free! XD !

I have been dealing with LPHS for over 3 years now and I feel I am starting to lose my mind! I too have been through so many doctors, hospitals and pain meds all to have them push you away when it doesn't work. I live in Central Pennsylvania where I am lucky if a doctor or specialist has even heard of LPHS. My biggest problem now is that I am now 10 weeks pregnant and my pain has been increasingly worse since I became pregnant. Now it has only made everything worse with doctors. Of course, they are now reluctant to give me any pain relief. I want only to have a happy, healthy baby and pregnancy but I am afraid I can't survive without someone to help me. Has anyone been through a pregnancy with theis syndrome? I am literally dying for some information or a lead to a doctor even somewhat local to me that would actually be willing to treat me while I'm pregnant. Thank you to anyone who can recommend anything at this point.

Katie

Hi im 18 years old and have just got home from a hospital appointment, the doctor said i had loin pain hemoturia syndrome iv had pain since i was 16 and because i had blood in my urine i was diagnosed with loads of kidney infections. And after alot of appointments and people thinking i was faking it someone has given me an answer, but now i realise theres not much i can do for the pain with is very dis heartening! its soo hard to work and stay happy when your in so much pain all the time! I wish everyone the best and hope that soon there i something that will cure this!!

Hi Bryanna:
I read your article on LPHS on the internet. I'm so sorry that you have to deal with this horrible disease. I too, have LPHS and have been searching the 'net for info. I've heard of Dr Hebert in Ohio before, and I'm interesting in contacting him. Do you know his/her first name, address, phone #, etc.? Anything that would help me find him? I would really appreciate hearing from you if you could and would be so kind as to pass this info on to me. Thank you!

Hi - thank God I saw you posted recently... I don't know how this posting works but I am a 23 y/o guy living in NYC who was potentially diagnosed with LPHS... I am now taking ACE inhibitors which I just started tonight and I am praying for some relief... Other than that I have been taking aleve / advil for the last year or so daily.

I am very curious to learn more about what you have learned so please please please let me know! Thanks so much.

Over 100 people are on the "Living with LPHS" support group on Facebook. Please join and you will get support from people that suffer from this disorder from all over the world. A Pain Management Doctor is a must when suffering from LPHS and it was recently reported in the support group that Dr. Herbert of Ohio is no longer excepting patients with LPHS. There is however a document on the support page that lists nephrologists, urologists and pain magmt. doctors that other patients have had success with. Good Luck.

Renee

Patty hope you are feeling better. My daughter has lphs and suffering. Also had kidney stones. Wanted to speak with you about dr weisberg at Cooper.if you could email me I will send you my cell number. I really appreciate it. Gary

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Thank you. I have accepted my LPHS diagnosis after 7 years of tests, repeat tests and never ridding of the pain and discomfort. I stop to read in hope of finding encouragement.