Introduction

I have had to adapt over the last few years from being a happy-go-lucky typical girl in my twenties to being constantly in pain, feeling unwell and always tired.  I thought it may be helpful to share my experiences of LPHS and Chronic Pain and Illness in general - perhaps some day this could offer some comfort to somebody in this position in the future.

My name is Sarah – I have been inspired to write this blog to explain the story of my life as “the sick chick”.

Me - Sarah the Sick Chick

It has taken my life from me in some ways, as I have forever been cancelling plans with friends, or missing nights out as I have just been too poorly to do anything other than lay in bed taking super-strength pain killers and worrying about what was causing it all.  I have lost some friends and a couple of boyfriends along the way as they couldn’t deal with me being ill so much and at times have been down-hearted and completely depressed about how I was feeling.  I also lost my dream job after taking far too much time off sick and being unable to complete all of my duties due to the side-effects of the pain-killers.





For the past 4 or 5 years, I have been suffering from almost constant pain in my lower back, recurrent kidney and urinary tract infections, high fevers and sickness.  It has meant dozens of doctors appointments, hundreds of days off, thousands of pain-killers and millions and millions of tears.

 
After seeing 4 GPs, a Urologist and a Nephrologist, having x-rays, CT Scans, Ultrasounds, cameras put in unthinkable places and being prodded, poked and probed by all and sundry I was given a diagnosis of Loin Pain Hematuria Syndrome ( or LPHS).

LPHS is what is called a ‘diagnosis of exclusion’ as it is applied to cases when all known medical reasons for the symptoms are ruled out.  Very little is known about what causes it, and it is a rare condition with only a few hundred cases reported.  Sufferers experience lots of pain in the kidney area, blood and/or protein in the urine. 

The condition is very rare and predominately affects females. Worldwide, only several hundred cases have been reported. LPHS is a debilitating disease due to chronic pain and the inability to know how to control it. The pain of LPHS can be worsened by acts as simple as riding in the car and undertaking daily activities. Many people with this disease are unable to maintain employment due to the debilitating pain 

I will share details of treatments and procedures I have been through and will go through in order to shed some light on what happens, how they feel and if they have an effect.

I promise this isn’t going to be a misery-blog though – I will also be writing about fun things and showing that in some ways the LPHS has actually changed my life for the better.

Please do not hesitate to email me if you have any questions or queries - I'm always happy to hear from people.  

My email address is thelovelymisshill@gmail.com