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.

How would you describe LPHS flank and back pain?

About 6 months ago I had a UTI which went away after antibiotics. However since then I’ve been dealing with prostatitis. They say you have to be careful since prostatitus can be caused by bacteria which can travel to your bladder and eventually to your kidneys. I’ve had everything tested (urine, blood, semen) and only semen had a trace amount of bacteria which was treated w antibiotics. To date however my prostatitus symptoms are present and flare up after having sex or drinking alcohol. I’ve never had any flank pain until last week. As such they did a CT Scan and a Renal Ultra Sound. Both of those came back as normal. But they did find a trace amount of red blood cells in my urine. I was able to control the pain w Motrin and I thought it was going away until yesterday. The pain was constant. But the main questions I have are

a) what does LPHS pain feel like exactly?

b) where does it hurt exactly? (I feel pain soreness on my side, abdomen, mid back and between the shoulder blades) most severe pain on my sides.

c) what would you recommend in my situation to determine if I have LPHS or not?

Still alive and living with LPHS

I had severe flank pain started in the late 80’s I was in my mid 20’s had just had my 3rd c section. I kept going to the Dr. for what I thought was a uti nothing would show up except blood. I held several jobs and missed work occasionally due to flare ups, some were tolerable others were not. In 2004 my husband of 22 years became very ill later to find out he had West Nile…yes a little mosquito kicked his butt. I thought he was going to die he ended up with meningitis was transported from one hospital to a bigger hospital and in the hospitals for over 2 weeks, after he returned home my disease reared it’s ugly head we have since found stress is the main trigger for me. I was afraid of losing my soul mate that triggered my disease and we have not been able to put it away since then.

I had a job I loved I was in law enforcement I was a alternate Sargent as well as a training Officer, I loved this job and was very good at it. I kept getting sick after years of them telling me I had to take a vacation because I never missed work. I missed some work and after others complained and even with Drs. notes I was fired, it broke my heart I felt devastated.

I tried other jobs and landed leadership positions I always ended in the hospital with my LPHS. And then I would lose those positions.

I almost went insane I always had the support of my Husband thank goodness for him he never doubted me and my pain, other family members did and I lost friends because I couldn’t make any plans.

I was diagnosed two times I refused to believe it but finally in 2004 I was told I didn’t have to believe it, it is what I have and I need to face it.

In 2010 I had an episode last for three months we put a pain pump in and in order to do that I had to meet with a psychiatrist they tested me and the test did show I am in constant pain.

I think the more we get this disease out for others to see maybe more people will realize what we do go through.

Just Diagnosed with Suspected LPHS

I was just diagnosed with LPHS. After 8 months of horrible pain, nausea, kidney infections, kidney stones, and just feeling like I have gotten hit by a bus- I have finally found a diagnosis that fits. I’m 16, so I’m still treated by pediatric doctors. My pain management doctor in Atlanta had abandoned me before I got this diagnosis, and a pain clinic in Boston had turned me away. I had to go in search for something that fit, and I finally found that something: Loin Pain Hematuria Syndrome (LPHS). After exiting my Atlanta adult nephrologist’s office this morning, it was like I was walking on air. I have finally got a diagnosis that fits and he is a man with a plan. Dr. Handelsman was so helpful and I know he could see my relief. He has treated 3 LPHS cases, so he is what could be considered the Atlanta expert. I highly recommend him if you have think you have LPHS and live in the South East.

I finally have something with a one of treatment, and I can’t wait to get started. Anyone else have LPHS? If so, how have they treated it?

Pain Is My Best Friend

Hello. I am Melissa. An independent, thirty year old mother of two. When I was 16, I had my first kidney stone. Convienently, my first surgery to have one removed. For 14yrs, I have increasingly been spending my time in Emergency rooms all for the same answer, ‘yup, you have kidney stones.’ Finally in February last year, I demanded my PCP to send me to someone that could lessen my stones as they had become constant and far more debilitating than the pain I had always learned to work around. So to the urologist I went. Longing for an answer and an escape from the recluse my pain had created. I was only disappointed when he told me the pain couldn’t be from just my stones, and there were other symptoms that were alarming and requiring of a Nephrologist. Dr. Liu is amazing. Had she not been as dedicated as she were, or studied where she did, I would still be just as answer less. A kidney biopsy and an argument between her and my PCP, I am now in a pain clinic. My second visit will be next month. The first thing he said to me was that my biggest problem will be in finding a doctor who can give me the answers I need. So now, I have an answer. My kidneys are 50% dead with a very thin membrane, and I have Loin-Pain Hematuria Syndrome.

I am a very positive person. I have had horrible things happen in my life, family that isn’t blood, but I have always had this spark inside me that knew everything would be okay if I just made the best if it and pushed forward. I think the plug has fallen out to the jar of that sparks fuel.

In the last year, I have lost my job, school has forced a medical leave of absence for three semesters, and my normal working out, working, going to school, taking care of the household life does her best on a great day to vacuum the floor without puking.

It was hard to accept that the girl who wanted to live to be a hundred, had to do her best to make it just ten more years. But I did it. I spent four days crying and feeling sorry for myself and all the things I would never do and decided I’d had enough. That wasn’t me.

Now I am stuck trying my hardest to find a way to get back to my ‘normal’ way if life as much as possible.

Is it wrong to just want to live as normally as possible until you die?
How can I find a way to live with this pain when every doctor you see’s first sentence is ‘I’m sorry it took so long for me to get in here, I had to research your disease because I’ve never heard of it before’ ?

I’ve done my best to deal with this pain as best I could for as long as I could. And now that I need help so that I can work and provide for my family, cook and clean for them, hell even make love to my spouse, I feel more lost and alone than I ever have.

Just me and my pain.
Standing toe-to-toe.
Fighting each other’s Will,
Both still standing in the same spot.

I’m a lucky one with LPHS

I wanted to write my story here, but it is super long so you will get the abbreviated version! I have had LPHS for almost 20 years. I have been to hell and back. I lost my friends and some of my family, my fiancee, and my career. If it weren’t for my parents, I probably wouldn’t be here today. I want everyone to know that there is hope, and I am proof of that.

When I was diagnosed, the treatment for LPHS was auto transplantation. With a 10% success rate, I said no thank you. I was then shuffled from pain clinic to pain clinic, because the docs said they couldn’t help me, most just looked at me like I was a drug seeker. My nephrologist was in Ohio, but I live elsewhere in the Midwest. I have taken every narcotic that you can take, not to mention all the other medications that doctors prescribed off-label. I also had many procedures (ultrasounds, CT scans, IVP’s, cystoscopies and a kidney biopsy that positively identified the LPHS). Then there was the numerous experimental procedures.

I was at my last hope of having a pain pump implanted, when my nephrologist suggested I see their pain doctor for a procedure called Pulsed Radiofrequency Ablation (PRFA). I went for the consult, and the doctor said I was a candidate for the PRFA, but not to get my hopes up. I was the sixth person with LPHS to have this done, and the results of the other five were not good. And of course being experimental, my insurance company did not pay for the PRFA. I didn’t care, I needed it done. Made a payment plan with the hospital, and had it done. My doctor said that it would be a success if it lasted 3 months and I could get off of 75% of my medications.

The PRFA lasted for 9 and a half months and I got off of 95% of my meds! I was thrilled! The good news is that the PRFA can be repeated. The bad news, is that you don’t know if it will work again. I had it repeated, and it has lasted 7 and a half years. Yes, I said YEARS! I am completely pain free in my kidney. I’m one that passes a lot of blood clots. I do have pain when the clot is moving down the ureter into the bladder and then out of my body. This is why I have to stay on a maintenance dose of morphine, to help when I pass the clots. But the dose is so small compared to what I used to take before I had the PRFA.

My life has completely changed. I now have a husband and a child. I wanted to share my story to let you know that there are options out there. When I was diagnosed almost 20 years ago, there was not many options for treatment.

I am not saying that the PRFA will work for you, but it is an option. All I know is whatever you do, do NOT give up. Keep searching, keep trying and keep your head up. Find what works for you.

A living hell with LPHS

Hi I am a 26yr male and I have LPHS for the past 6 years I have had kidney stones since age 14 and I’ve had about every surgery that a person can go thru for stones. I currently moved back to Omaha NE and I can’t get any help here even if my doc in Aurora CO calls and talks with them. The urologist told me that he can’t help me and to go back to CO which I wish that I could as I had a great doc, she was the one who diagnosed me with lphs as I pee blood on a regular basis and I ha’ve so much unbearable pain I was taking oxycodone 120mg a day, lyrica 450mg daily and I would have a ketamine injections as needed as it resets your pain receptors and helps so I dont have to take as many pain pills and it really works.

So before I left co due to not being employed I had no place to live I’m trying to get SSdI I have a lawyer so I hope that I can get it this time around since I have been diagnosed with lphs I really need it and now. As I cannot work due to chronic pain and I’m not a reliable person as I’m always at the hospital or seeing some doc … Like gp, urologist, pain specialist, nephrologist and they tell me – “I’m sorry, I can’t help you, I don’t know how to treat you”!!! I have been on about every pain med known to man … The docs try and put me on methadone, but it makes me super sick and kills my stomach. I’ve tried suboxone as well and same thing.

I am so sick of getting the run around, I am close to selling everything I own, which isn’t much anymore and move to Germany as they are #1 in the world for health care. I just feel like dying, I can’t take this damn pain anymore I’m just plain tired sick in tired of being sick and tired and no one understands, not my family or friends.

I just want to be pain free once again, I want to be able to work again and live a normal life, but we all know that won’t happen. No cure for lphs. They say, sometimes it will just go away, but I can’t see that happening as I’ve had it for the past 6years. I’m tired of docs looking at me like I just want pain meds when I just want a doc to help me, like I had in Colorado. Yea, I could move back there but I’d have no place to go and I don’t want to have to sleep in my car again as that’s no way of life, but neither is having lphs. And me being so young I am scared that it’s just going to get worse as I get older.

I keep getting infections like mrsa and vre. I currently have mrsa again. I’ve been on bactrum for so long that it doesn’t work for what I have now.

I am really considering suicide as I can’t take this anymore, all I am is a burden to my family. My mom tells me that I suck the life out of her and I just feel worthless even more. I’m tired of chronic pain, I’m tired of my left side and left testicle hurting all thee time. It just isn’t fair for people like us and very unfortunate and our government controls it all and it’s bs. LPHS needs to be on the list for ssdi. Thank you for reading my story I sure hope it can help some one.

Every one has to work

I have been dealing with Flank pain of unknown origin, chronic kidney stones, all kinds of gastro misdigagnosis for 22 years. I was the full time care giver for my father with COPD followed almost right away by my mother comming down with ovarian cancer. Now that both have passed, my brother and sister became my trusties. They refuse to give any creedence to this diagnosis. They both have no medical backround and have come to the conclusion that any pain managment doc is only a drug dealer and that I can not afford health inn. And if I want to eat more than my food stamps I need to get off my lazy butt. They both have told me to go hold a sign or be bouncer. They have both told me to get over it, every one has to work. They both have said any time we speak, it is all BS about pain, vomiting. My sister screamed at me that getting to BJ’s to shop for the month is not an accomplishment, yet some days it is an epic journey to do 2 things. I am now living with 2 LPHS diagnosis, no pain meds, no doctor and they not only make me feel like a usless burden but that somehow I have let them down by not living up to my potential. I dont know where to turn for help or support in Miami. Every day I wake up feeling like I have been kicked in the scrotum, the pain causes me to vomit with such force, that I often pull muscles in my back and neck. I was on the 50 pu Fentanyl patch and oral Dilaudid, Morphine for breakthrough. Now on no pain killers, it is such a trial to even be civil. I have no way to get through to my siblings, this pain is horrendous and so arresting, but they treat me as if this “life” is some kind of a choice to avoid employment. I am 47 years old and this is the worst the pain has been. Without the Fentanyl I am getting more done, but the recovery days are lost time of my life.