Tag Archives: pain

LPHS…. my story from London

Hi,

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!!

Annie (ithinkitsabargain@gmail.com)

OH – OSU Comprehensive Spine Center


Steven Severyn M.D.
Steven.Severyn@osumc.edu

OSU Comprehensive Spine Center
Martha Morehouse Tower, 7th Floor
2050 Kenny Road
Columbus, Ohio 43221

Phone:
(614) 366-3269
(614) 293-2225
Fax:
(614) 293-6763


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

http://anesthesiology.osu.edu/5060.cfm

Specialty:
Anesthesiology Pain Management

Hospital Affiliation:
James Cancer Hospital
University Hospital

Clinical Interests:
interventional pain management, interventional procedures, pain medication consultations only

Loin pain hematuria syndrome (LPHS)

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.

Stories

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 stories

More about LPHS

Some facts about LPHS

http://en.wikipedia.org/wiki/Loin_pain_hematuria_syndrome