Category Archives: LPHS

Real stories of people – who are now living with LPHS. Loin Pain Hematuria Syndrome is a rare, poorly defined kidney disorder characterized by recurrent, persistent loin pain and blood in the urine.

Life with LPHS

The pain started November of 2008 and I can remember the day like it was yesterday. I was at work on a break and immediately dropped to my knees in pain and thought my appendix has burst. I left work and went straight to my doctor.

The doctor did not know what was wrong and had ruled out my appendix as a cause. He thought maybe I had a cyst burst on my ovary game me a shot of pain meds and I was sent on my way. Well the pain continued on and I was referred to a urologist because an X-ray showed kidney stones in my right kidney. So off I went to the urologist to hope for some relief. The urologist was not sure how I was in so much pain since the stones were just sitting in my kidney.

At this time I had already had plans to move to NC and was scared of what to do. I was prescribed pain meds and sent on my way. Once in NC I met with a new urologist and he decided to do Lithotripsy, July, 2009 and break up the stones and see if that brings relief. Well to make my very long story short, it did not and then the following year I had more stones and attempted Lithotripsy once again. The 2nd Lithotripsy made the pain worse and it last non-stop.

After, being bounced from ortho to chiropractic to acupuncture….I took control and demanded to be sent to a Nephrologist. At the appointment, the Dr. walked in and told me he knows exactly what is going on and continued to explain Loin Pain Hematuria Syndrome and how all my history and test confirmed I have it.

I felt a weight lift off of me to know I finally have an answer and I am not crazy. However, he explained he felt horrible, but based on lack of studies there was nothing at this time he could do for me other than, send me to a Pain Clinic for pain management.

I was sad to be stuck with this and not have a cure yet happy hear the words pain relief. So off I go to yet another doctor very hopeful to find relief and get back to being NORMAL. The appointment lasted a whole 5 min. and the Nurse told me they could not treat me because they did not know how to and the fact there was no cure. I burst into tears and told her the pain was killing me.

At this point I didn’t even know what happy was anymore. I felt like cutting my own kidney out just to try and make it stop. When I left the clinic I called my nephrologist in tears and told him what had happened. He was very upset and said they should never refuse a chronic pain patient treatment. The next day I was woken to a call from him that he had sent my information to another pain management clinic and that he was so sorry for how I was treated.

This was in October, 2013 and I was not very hopeful anymore and was just like whatever. I have to say though I am so very thankful for the new pain clinic, they have been amazing and trying their best to find a way to manage this rare disease.

I am not 100% pain free but I have had a few pain free days for the first time in 6 years. It still is a struggle and I have my days I just want to lay in a ball and cry in pain but I must strive on and work.

I do agree this condition should be put for permanent disability until they find a cure because it is very hard to make it through the day in such horrid pain.

My pain story – Kariemah

My name is Kariemah and I live in Cape Town South Africa. I am a pain suffer since 1998, it took my specialist 8 years to reach diagnosis of LPHS. As none of the oral pain medication worked, they presented the option of an intrathecal morphine pump. This was done in 2007 and it worked wonders for me.

I had very few hospitalizations for pain, whenever I needed an adjustment of my internal medication. Please bear in mind, it does not remove your pain, it just lightens it. I think any person with LPHS understands that any slight reduction of pain means a great welcome. So not a pain free day but a more manageable one.

My problem now is I lost my job 3 years ago due to pain as well as my medical aid which originally paid for my pump. I am very lucky my sister put me on her’s for now. The medical aid however are taking their time to consider paying for the operation.

The battery only lasts 7 years and needs replacement. Now on my sisters medical aid struggling to get approval and running out of time. Medtronic is the pain pump manufacturer. If you are able, have a look at this as an option, it really does relieve pain.

My brother’s keeper

Dear LPHS and other pain sufferers, I am compelled to share the following information with you for a two-fold reason: 1) that actual sufferer of LPHS is a dear family member and 2) said sufferer is currently incarcerated and cannot help himself.

What I am about to share with you is an account of his years of pain, in his own words from a letter he sent to me (I will not add or delete anything, except for any proper names or anything that might be considered a breach of an individual’s privacy):

Hey bro, Well as far as my kidneys. You know what you read already. I have microscopic blood in my urine on occasions but it is mainly macroscopic (you can see it). When I do urine tests it is usually 3 blood or more. I have constant kidney/bladder infections. In fact, I am finishing up a course of Bactrim for one now.

I have pain that would put a bull in traction damn near EVERY day. I have gone to medical on numerous occasions with very little help. **** doesn’t want to pay for anything. They won’t even send to see a Urologist or Nephrologist for it. I have been sent out to civilian emergency rooms only twice. I am usually put on a 5 days course of Ultram, which is a very low dose, non-narcotic pain med. It helps some but with only 5 days it doesn’t control the pain through the whole episode. I have bad pain that can last up to 30 or more days. After 5 days of the Ultram I am just starting to get some relief and they cut me off.

The Nurse Practioner I see now is trying to help me. He has submitted my case to the Pain Committee but with no success. They tell him to put me on high doses of Tylenol and Motrin. I can’t take those for long periods of time because they are bad for my kidneys. Some days I really wish I was dead instead of being in pain. I know it sounds bad, but it’s true. I have cried myself to sleep more times than I can count. I could just use someone to help me force these f***ers into really helping me.

This disease will not kill me but it sure as hell makes me wish for death. I don’t need a lot of help, just enough to keep me going until I can get out of this rat race and see a REAL doctor. They think in here that everyone is just trying to get pain meds. Everyone wants to get high. Then when it comes to someone with a real problem, they get screwed. They finally have my blood pressure under better control. It used to get as high as 200/170 with a pulse rate of 165. That is enough to cause a stroke. It is usually only that bad during severe episodes of pain.

I am on 3 different meds for blood pressure and pulse control. Verapamil, metoprolol, and lisinopril. they at least keep my pressures under better control. When I have a severe attack though, they still go up. The Nurse Practitioner told me that is what got his attention because you can’t fake blood pressure. That is a big problem with this disease because you can’t SEE it so the docs think you are either drug seeking or mental. I have had to deal with that for years.

It took 4 years of tests and psych evals before I was finally diagnosed in 1998. It was thanks to those two women from Europe. It has been a very long, painful trip since I had my first kidney stone in Oct. 1994. After that, it all went to shit. I passed 12 kidney stone in that next 2 1/2 years and I’ve had 1 in here back in Feb 2011. The kidney stones didn’t hurt as bad as this disease. It is worse than giving birth because at least the pain stops, pretty much when the baby comes out. This LPHS pain continues for far longer.

Well dude, not sure what else to tell you. I do appreciate you doing this for me. Take care of yourself and I will talk at ya’ later. I love you all.

I am disabled now by LPHS

Female, 55, married, 3 children, 3 granchildren, teacher at a school for children with a learning or behaviour disorder. Dutch, living in Noordwijk in the Netherlands. Diagnosted with LPHS in 2005 at the LUMC, Academic hospital. My english is not the best, but I am trying. I have a very good kidney specialist and he was very quick with his diagnose. I have a specialist at a special pain departement of the hospital and I have mental coaching. Two years ago I even followed EMDR therapy. At the moment I have just heard that I can not work anymore being told I am disabled now by LPHS. I use a lot of pain medicines
( cymbalta, Lyrica, Oxycontin and oxynorm )

My Story, Gabe 16

Hey Guys, My name Is Gabe, I’m a 16 male from Pennsylvania. I was diagnosed with Loin Pain Hemoturria Syndrome about 2 months ago. It all started last November when I started having the worst lower back pain in the world. It was the worst pain I had ever felt. I told my mom about it thinking it was nothing so we let it go. After about 2 months of this I went to an Orthopedic doctor who thought I had a hairline fracture in my spine somewhere. I got a bone scan along with several other texts for the Orthopedic’s. Unfortunately I had no bone damage. After that appointment trying to figure out what to do next I started urinating dark brown, that night i was checked into the ER. I got to leave that night diagnosed with an UTI, wrong again. Then we were referred to an Urologist. By now it was about March or April, the entire time i had been in daily pain with no pills giving me any relief. The urologist then sent me to the nephrologist . Our first appointment she scheduled tests for me and sent me to the Chronic Pain Clinic in my area. The doc gave me a steroid injection of some kind. All it did is put me in worse pain. He sent me on my way until 2 weeks later. By now I had gotten annoyed because it wasn’t until late May that I got an appointment to see the nephrologist again . I had several tests done by her, one involving them putting a catheter down my neck to check the pressure levels on both sides of my back/ kidneys. That was the first test that had showed any indication there was something actually wrong with me. My doctor then called me back in to tell me the news. I then found out I had LPHS, I had no idea what that meant, and I didn’t care. She said she would talk to a cardiovascular Surgeon and give me a call back when she had everything figured out. By now it was about Early July. Between this time i had been given Vicodin and that did nothing for me, some sort of a muscle relaxer, and Tramadol. Soccer season was coming up my appointment with the surgeon was for late August, another month of waiting. Shortly before the appointment the Chronic Pain doctor gave me an anti-seizure medication called Gabapentin, apparently it was supposed to work. All that did was put me in a very bad mood. I had stopped taking it and I was just waiting for my appointment with the cardiovascular surgeon. The day came and I met with Doctor. Atnip of Hershey Medical Center, apparently this guy was one of the best. When I got there a resident nurse came in fascinated asking me so many questions about LPHS, it was like I was a science marvel. Then Doctor Atnip finally came in with another resident who just stared at me in awe. Then he told me all my options to possibly fix this, waiting was the first thing he said. Which was not an option for me. After just a year of this i had worn on me so much and I just need it to be done. He talked to me about doing some sort of bi-pas by taking part of a vein from my leg and bi passing the compressed vein of leaving my kidney. He was against putting a stent in the vein that needed to be fixed. So as of today September 18th I just got a vein mapping done to see if my veins would even work for the surgery. When the nurse said they would I felt some hope finally. Now Doctor. Atnip had talked to my nephrologist and they both feel this is the best option, and apparently due to my body weight and type this surgery had a good chance of success. After reading up on LPHS a bit i discovered what other patients were taking to manage pain, so on the 20th i have another pain appointment, hopefully to actually get something that works. The only thing that worries me is it seems like no one actually gets rid of this or fixes this. But I’m hoping for the best. If anyone has any advice of surgical experience, pain advice, anything i would be more than happy to hear.

19 Year Old Suffering for the Last Seven Years

For the past seven years I have been in and out of hospitals, tests done, specialists seen, and surgeries done to help me with pain. It took me about 5 years to actually be diagnosed with LPHS. I was diagnosed my senior year of High School, along with RTA (Renal Tubular Acidosis), they say this is a primary disease to my LPHS but who knows if they really know what they’re talking about. I was involved in absolutely everything you can imagine in school. I was a two year dance officer, yearbook and newspaper writer, academic UIL team, national honor societies, and even homecoming queen ect. My pain got so bad that I was hospitalized for a week during New Years of 2011. With the grace of God I was able to push through and actually graduate high school in June of 2011. I couldn’t have done this without my amazing pain specialist Dr. Jeffery Charnov in Houston, TX. He made me feel that he knew I wasn’t making up my pain. I took a pain patch to be able to attend school. The pain patch (Fentyal) slowly went into my blood stream and maintained a constant level of pain medication to where I was able to function everyday, although I was still in pain. The pain patch takes the edge off of the pain and still allowed me to drive. Other pain medication I took would drain my energy and I couldn’t function day to day. I then found out I could get a nerve block (Celiac Plexus Block) which is a procedure done under general anesthetic, where my pain specialist injects a local anesthetic mixed with a small dose of steroids. This procedure is an outpatient one, and I can usually function after a couple of days. The pain afterwards is due to swelling in the back and you receive a series of injections to allow the affects to last longer. I usually receive two injections back to back within two weeks of each other. This is the only treatment that has given me significant relief. The longest I went without pain medicine was about two months. Over the past year I have received eight injections and I just had my eighth injection a few days ago. The injections usually lessen my pain from about an 8/10 to a 5/10. I also get kidney stones too which just makes the pain that much more excruciating. I had a Lithotripsy surgery done two months ago to break up a stone I had. I just finished my freshman year of college although it was hard to balance school with my pain, I managed to not give up and not let LPHS Get the best of me.

Keep fighting! Don’t ever give up, we’re too strong.

If anyone would like to chat, I’d LOVE to! You’re not alone and you need someone who can understand where you’re coming from!