Medical Mystery - Specialist number 1

The journey from starting to suffer from the symptoms of LPHS to obtaining a diagnosis was a long and complicated one, and I had to go through lots of tests and see several doctors before my condition was identified.

(Do I sound like a douche for saying "journey"? It's cheesy, like I'm on the X Factor or something...)

When I initially started suffering from pain in the mid-right hand side of my back, my GP assumed that it was something to do with my having had my Gallbladder removed 2 years previously and sent me for an Ultrasound scan to see if more stones had formed since my operation.

The radiographer did not find any gallstones, but did note the presence of several small growths on my right kidney.  By this point I was also suffering from recurrent Urinary Tract Infections. This led to me being referred to a Urologist, a doctor specialising in the surgical and medical diseases of the male and female urinary tract system. 

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The Urinary System

The organs under the domain of urology include:

The kidneys - Organs which filter the blood and remove waste products
Adrenal glands -
Ureters - Tubes which carry urine from the kidneys to the bladder
Bladder - The organ which collects urine from the kidneys before expelling it via urination
Urethra - tube that connects the bladder to the genitals for the removal of fluids from the body  

(They also deal with the male reproductive system, but that doesn't apply to me - my interest in those it purely non-professional! ;-) )

The Urologist diagnosed the kidney growths as Angiomyolipomas - a type of benign tumour of the kidney composed of blood vessels, smooth muscle cells and fat cells.  I have to admit that I was terrified by the use of the word "tumour" but the doctor advised me that the growths have no real effect on my well-being, and that the only time they would need medical intervention would be if they grew drastically in size or if I were pregnant.

In order to check the state of my bladder, ureters and urethra, I had to go through a procedure called a Flexible Cystoscopy.  This involves a doctor inserting a very small fibre-optic camera into your urethra and up into your bladder, with the camera feeding back to a screen in the consulting room.

I won't lie - this procedure was not the most pleasant thing I have ever had to go through, but it doesn't hurt at all.  The camera is tiny and the doctor will use lubrication to ensure it moves smoothly. Once the camera has entered the bladder, a small nozzle of it fills the bladder with water in able to make sure that all of it is visible - the bladder is rather like a balloon and you have to ensure that it is fully "inflated" to be able to see all areas of it.  The doctor then rotates the camera to get a 360 degree look at the bladder interior and the ureters.

It is certainly a very odd experience looking at the inside of your bladder on a television screen - it is a strange pale grey colour and almost looks like you'd expect brains to look, all soft bumps like they appear in cartoons.  The worst part of the whole procedure is when you next go for a pee - the sensation of passing cold water is very odd!

In my case, no problems or issues were identified and I was referred back to my GP as the Urologist had no further ideas on what could be causing my symptoms.


In my next post, I shall go through the other tests and procedures which led me to my diagnosis.

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 

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