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.

15 thoughts on “A living hell with LPHS”

  1. Nick
    I am so sorry that you are going through such a hard time. I totally understand about the constant pain (as I sit here at 3:30 am because it is too painful to lay down). The pain affects my sleep, which affects my outlook on life, which is what I think is happening for you too. Please hold on to hope- sometimes when I have been at my lowest, something happens that I never expected but which makes me glad I powered through the low time.

    1. Should ask your M.D to read ”Does this case hold the answer to LPHS B.M.J Russell etal, BMJ Case Report 2015 On the use of Cialis on the ureteric spasm

      1. Hallo, ich bin vor kurzem auf deinen Bericht über Taladafil gelesen und bin völlig erstaunt?!!! Ich nehme seit Jahren starke Schmerzmittel die mich benebeln aber trotzdem nicht komplett schmerzfrei machen! Ich würde gerne wieder arbeiten und richtig am Leben teilnehmen können… Wie sind deine Schmerzen heute?! Kann Taladafil wirklich helfen in Bezug auf Lphs?? Nimmst Du zusätzlich noch andere Medikamente?! Über eine Antwort würde ich mich freuen!!
        LG

  2. Nick,
    I understand you, and feel for you. I have been through help and back with this stupid disease, or if it can even be called that. I am turning 40 this year and I first started with intermittent pains when I was 12. When I was about 14 the pain was constant and then I would have unbearable attacks which sent me to the ER. I was diagnosed after 5 years and had a left to right bilateral autotransplant which did not go well. It did stop my pain for two months which was great but then it returned in the new location of the transplant. In 2008, I developed pain also on my right side where my native kidney is located. In 2009, I had to leave work. I am now considered disabled and from what the Dr.s say permanently. SSI has been helpful but it is just as hard to find doctors who will treat you. I would do anything for a day of normalcy. I would even do a day of just an ache. I hope that one day we all will find peace and continue on a path of success and happiness. I have hope. I hope that you get that day too.

      1. I totally agree with you on that I def feel like I cant get my old self back not even a lil bit this lphs has ruined my life and has taken all my dreams away and I’m just fucked and that’s that I’m sorry you have to go thru this as well as I. I’m actually in the hospital right now thanks for sharing your story take care keep ur head up ik easier said than done right

    1. One day we shall. If you believe in God or a higher power; There’s an eternal life to look forward to, one without pain and disease. Regardless of your beliefs; without hope, there’s nothing left, and no reason to aspire toward a “better day.” We cannot see beyond today, so why not believe that in time things will improve? I’m a 47 yr. old female who’s been living with this for six years. Be your best advocate, it’s often we who educate.

  3. So sorry for your constant battle. My husband is 55 and developed LPHS in his 30’s. He has been through all that you have described. He did find a good doctor who refused to give up and eventually implanted an intrathecal pump in his body that takes the edge off his pain. The meds are metabolized differently so there are fewer side effects. This doctor also just started doing ketamine infusion treatments. His name is Robert Wills in Austin TX. My husband showed him your letter and the doc expressed an interest in wanting to help you. This doctor actually asked if he could keep the letter so he could try to find you. Feel free to contact him or us. Don’t give up!

    1. Hello
      My name is Jennefer Jenner from Holland. Im have lphs for 7 jaers. My englisch is not so good sorry. But i am craing for help her in Holland nobody can help me. I have morfine but the wont to stop this because the dont no anything from lphs. My life is terribel. Im 34 years old and i can do nothing. Please somebody help me to find a docter who can help me. Here in Holland the are whery difficult whit morfine but without this i can life. I hope somebody can help me!!!! My email is jenneferkc@hotmail.com

  4. Hi Nick,

    I am so sorry for what you are going through. I, too, am an LPHS sufferer. I was diagnosed at 29 after a year of going from doctor to doctor, countless ER visits and multiple tests. I am now 34 and have had LPHS for five years. One thing that has helped me mentally has been getting involved with LPHS support groups on Facebook. To be able to talk with others who know exactly what you’re going through is really important. At least we know we’re not alone. I created a website to educate people about LPHS, to share my journey and to help spread awareness. Please check it out if you have a chance, the address is : thespacesinbetween.simdif.com
    Feel free to message me and to join the support groups on Facebook. We would love to have you! The same goes for any other LPHS patients who may be reading this. Please don’t hurt yourself. Don’t let the disease win. You are strong, and even when you’re feeling weak, the rest of us can lift you up and help you get through the tough times.
    Take care and stay strong,
    Ali

    1. I have been diagnosed with this disease and everything you are saying is almost identical to how I feel…this disease really sucks and I jus don’t no wat da hell to do cause I am so sick of this pain also.I have been going through this disease also for Like 4 years now and I just don’t see the light at the end of the tunnel yet and god knows I’ve been looking for it…I just don’t no what to do cause I would love more then anything to have a pain free and normal day but it’s just not happening…please father god help me with this crap cause sometimes I just feel like I don’t wanna be here.

  5. Does this case hold the answer to one of the
    worse types of pain in medicine—that of loin
    pain haematuria syndrome (LPHS)
    Alan Russell,1 Suman Chatterjee,2 Michael Seed3
    1Brampton Pain Clinic, Main St
    Medical Centre, Brampton,
    Canada
    2William Osler Health Centre,
    Brampton Civic Hospital,
    Brampton, Canada
    3Medicines Research Group,
    School of Health Sport &
    Bioscience, University of East
    London, London, UK
    Correspondence to
    Dr Michael Seed,
    m.p.seed@uel.ac.uk
    Accepted 3 April 2015
    To cite: Russell A,
    Chatterjee S, Seed M. BMJ
    Case Rep Published online:
    [ please include Day Month
    Year] doi:10.1136/bcr-2014-
    209165
    SUMMARY
    A patient with loin pain haematuria syndrome suffering
    chronic throbbing pulsing pain overlaid with prolonged
    periods of incapacitating colic and overnight vomiting
    was presented 10 months following diagnosis.
    Ultrasound was normal. No renal or ureteral stones, or
    filling defects were seen on CT. At cytoscopy, bladder
    and urethra were normal, and bloody urine effluxed from
    the left ureteric orifice. The ureters were normal at
    diagnosis, and developed new abutting non-penetrating
    calcifications by 8 months. Pain episodes of complete
    incapacitating intensity of 2–4 h duration were reduced
    to 10 min with 5 mg crushed tadalafil administered at
    onset. If tadalafil was delayed to after onset, the original
    course of agony resulted. Daily tadalafil reduced loin
    pain intensity, but not the exacerbations. Tadalafil
    efficacy may indicate that the pain exacerbations are due
    to spasm of ureter smooth muscle. 5 mg tadalafil taken
    at onset alleviated severe loin pain exacerbations in this
    case of loin pain haematuria syndrome.
    BACKGROUND
    Haematuria accompanied by repeated prolonged
    bouts of colicky pain in the absence of any other
    pathologies associated with the urogenital system,
    is termed classical loin pain haematuria syndrome
    (LPHS).1–3 It is rare (0.12/1000) but the pain can
    be considered to be among the worst that can be
    experienced and is profoundly disabling. The
    haematuria is glomerular in origin,4 can be witnessed
    with or without clots, and can be detectable
    by microscopy between episodes. The pain can be
    unilateral or bilateral, resistant to standard analgaesia
    as well as, eventually, to opiates, and can be of
    such severity as to warrant nephrectomy or renal
    autotransplant with denervation. Pain alleviation
    has recently been reported after bilateral splanchnic
    nerve ablation.5 It is reported that renal denervation
    gives prompt relief but haematuria and pain
    can recur in the contralateral side. Periods of pain
    may or may not occur coincidental to periods of
    frank haematuria. Haematuria is controlled by
    ACE inhibition.3 We describe the use of the
    phosphodiesterase-V (PDE-V) inhibitor tadalafil to
    reduce the severity of the ureteral tetanus in a
    patient with LPHS, leading to a significant
    improvement in quality of life.
    CASE PRESENTATION
    A 35-year-old woman was referred to the
    Brampton Pain Clinic with LPHS for consideration
    of

  6. Hi Nick,

    I’m very sorry to hear your story. I have LPHS since 24 years and I know what terrible pain this is. I have one question: You said you went to Germany; did you by any chance met Dr. Michael Zimmermann from Goethe-Universitätsklinikum Frankfurt am Main? He is a pain therapist (my pain therapist,too, I live in Munich, Germany) and he does not treat his patients like they were worthless crap. Of course he couldn’t “heal” my pain (I have chronical pain and renal colics 2-3 times a day), but he at least tried to help me. Most doctors haven’t heard of LPHS in hospitals in Germany, so I don’t go there anymore; they look for kidney stones (which I don’t have, and it’s really hard work to explain them over and over again what’s LPHS when you’re in great pain); so I only see Dr. Zimmermann from time to time.
    I’m sorry that your family doesn’t encourage you; I hope you will find doctors and friends who will sustain you!
    Best wishes from
    Mina

    1. Hey thanks for replying ya I definitely understand it gets passed annoying having to explain the same thing over and over again.. For me I do get kidney stones as well but I know the difference as I’ve had them since I was 14…ya it would be nice to go to a hospital and feel wanted even and have a doctor who truly wants to help and improve the quality of life I have not make it even worse for me like most of them just love to do.. Is there any other men out there that has lphs as well or I’m I the one and only.. As everyone I have spoke to with lphs has been female for some odd reason.. And yes we have lphs but the symptoms from men to women differ quite a bit and all..

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