I am in London, England and this has hit me too. On June 6th last year I had an episode of frank haematuria and went to hospital, they suspected a stone but after many tests and a ureteroscopy, I was diagnosed with LPHS and sent home with painkillers…practically written off.
Not happy with this I complained to my doctor who referred me to another specialist at a well known hospital in London. He said he needed to do another ureteroscopy and i had that done last month, again i have now been almost written off. I am under the care of a pain team at the hospital who want to fit me with an implant which will mean i can zap myself when bad. The tablets they gave me are pregabalin, diclofenac and a regular analgesic. Diclofenac is related to aspirin and gives me terrible acidity and I am allergic to gaviscon and alike antacid meds. Pregabalin wipes me out and I just sleep all day.
I can no longer work and the tablets only dull the pain slightly.
Our national health service means that as soon as they realise they cannot fix me, i am sent home with pills and forgotten about.Please wish that the USA does not end up with the health service it is currently pushing for as then you will all be in the same boat as me and my mother who was not allowed MS treatment because it was too expensive for the over 5o’s.
I am 39 and a full time carer for my father which is becoming an untenable situation. I also have a twelve year old daughter and pray she does not get this too. Some stories on here show a hereditary link.
I feel that because there are so few of us around the World, the money needed for research will never be forthcoming and that means we are all left in limbo and in terrible pain.
It is a solitary illness because when its really bad and you are doubled up , nothing anyone does can help so you tend to retreat into your own space to deal with it…like a wounded animal.
I wish all sufferers as much pain free time as possible…..above everything, the pain gives us wrinkles!!
Ava Mina Pain Treatment Clinic
Ste 206, 2360 West Joppa Road,
Lutherville Timonium, MD 21093-4664
Dr. Sherif Meleka
Bethesda Naval Hospital
8218 Wisconsin Avenue, Bethesda, MD 20814
Washington Center for Pain Management
Phone: (425) 774-1538
21616 76th Avenue West
Edmonds, WA 98026
14670 NE 8th Street
Bellevue, WA 98007
17800 Talbot Road South
Renton, WA 98055
Steven Severyn M.D.
OSU Comprehensive Spine Center
Martha Morehouse Tower, 7th Floor
2050 Kenny Road
Columbus, Ohio 43221
N411 Doan Hall
410 W 10th Ave
Columbus, OH 43210
Phone: (614) 293-8487
Fax: (614) 293-8153
Certification in Pain Management:
American Board of Anesthesiology
Anesthesiology Pain Management
James Cancer Hospital
interventional pain management, interventional procedures, pain medication consultations only
Assistant to Lee A Hebert, MD
Ohio State University Medical Center
N210 Means Hal
1654 Upham Drive
Columbus, OH 43210
Back pain specialist
Loin pain hematuria syndrome, also LPHS – is a very rare condition which predominately affects females. Described as combination of unilateral or bilateral flank pain and microscopic or macroscopic amounts of blood in the urine that is otherwise unexplained.
One theory proposes that it is caused by a thin glomerular basement membrane and red blood cell (RBC) renal tubular congestion that leads to swelling of the kidney and distension of the renal fascia resulting in pain.
Kat – Overwhelmed and in need of advice
Lauren Runkle – Overwhelmed at 17.
dragonfly1693 -Living with LPHS
Craig – 21 Years with LPHS
Tania – I am 16 yrs old and my doctors believe I have LHPS
Kiki – 23 years old and uncurable
Shery – Answers to my questions…do you have any?
loveandpeace3 – Painful life
Ivy – LPHS….My Story
More about LPHS
Some facts about LPHS