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.
Thank you for your story Melissa,
I’ve had hematuria for six years, along with severe flank pain, of which I’ve been shuffled from dr. to dr. with varying degrees of misdiagnosis, even that of somatoform disorder, similar to that of being a hypochondriac. Tests have revealed no other cause for the hematuria and flank pain, leaving me to flounder on my own in search of a fitting diagnosis. I was about to be labeled a drug seeker from my current pain mgmt. clinic, until my last CT scan and UA. It truly is hell to suffer severely w/o a diagnosis, to be able to get the appropriate pain relief. It takes a dr. that is willing to step outside the box, as most don’t even think of this disorder. I’ve lost a leg in a horrific motorcycle accident, and even that didn’t compare with my current suffering. So thank you for shedding some light on this.
Hola soy Nathaly Astudillo tengo 26 años soy Ecuatoriana, después de 5 años me diagnosticaron de De LPHS por un lado estoy aliviada de por fin saber que tengo después haber sido tratada hasta psicológicamente, en estos últimos 4 meses eh tenido Dolores terribles que han requerido largos días de hospitalización! Acá en mi país es algo muy nuevo mis Nefrologos no han tratado esta enfermedad! No se como los traten a ud no si ya estén bien me refiero a que no tengan dolor constante y de ser así me gustaría saber como lo lograron! Es muy limitante tener que pasa 24 horas con dolor!
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 (https://casereports.bmj.com/content/2015/bcr-2014-209165.abstract) 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
Patrick