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.

4 thoughts on “Still alive and living with LPHS”

  1. Hi Sunni – I was diagnosed with LPHS about six years ago. I’m still struggling to find support for it. I see that you saw a psychiatrist to get a test run to see how often you were in pain. Is that common? I’m wondering if that’s something I should look into.

    I’m also curious how you feel when you’re going through your flare ups. Mine tend to get trigger more when I’m standing and walking and I’m curious if others experience the same thing?

    Thanks for any information you’re willing to share! I haven’t been able to chat with anyone about what they experience before so I’m really curious.

    1. I have LPHS since 2009 and walking is a trigger for me too. Right know I have so much pain that I’m going to hospital to see if I got something more in the kidneys, like a stone. Otherwise it’s my new pain level and the “great news” that even my right kidney have started to ache

  2. School of Health Sport & Bioscience
    University of East London
    Water Lane
    London E15 4LZ
    United Kingdom.

    Hello, Good afternoon. My name is Patrick Fagbuaro and I’m an MSc Medical Physiology student at the University of East London. I have been given permission to contact you and ask a favour.

    For my research project I am conducting an epidemiological survey on patients suffering from Loin Pain Haematuria Syndrome. LPHS is a horribly debilitating disorder and hopefully the work done in this project will contribute to improved understanding and treatment in the future by gathering patient experiences. The questionnaire will be conducted at UEL under the supervision of Amina Dilmohamed, a nurse in health studies with experience in epidemiological surveys; and Professor Michael Seed, Professor of Pharmacology, who was part of a team which recently published a case study on the treatment of LPHS ( and is undertaking fundamental research into LPHS. The study has been given ethical approval (XXXX) by the School of Health Sport & Biosciences Ethical Review Committee. We are currently the only people in the world doing basic research into LPHS.

    If you or the members of your group would be interested in taking part in the survey, or if you can put me in touch with appropriate individuals, the contact details of myself and my supervisors are below.
    Patrick Fagbuaro; [email protected] – Prof. Michael Seed; [email protected] – Dr Amina Dilmohamed; [email protected]
    I would be very grateful for your help.
    Thank you for your time
    Best wishes

  3. My wife has been diagnosed with LPHS, which she has endured for almost a decade after multiple and frequent kidney stones. She had renal denervation, followed by partial nephrectomy, via cryotherapy. This combination, provided pain relief for two years, but the pain returned. She now takes opioid analgesic pain relief on a daily basis, through doses of Tramadol, Morphine and Severadol. Is there any update on possible effective treatments for this rare and debilitating condition, as we are fed up with fighting ignorant clinical professionals in order to get adequate treatment.

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