Intravenus Urography (Pyleography)

The last of the major tests I underwent before my diagnosis was an Intravenus Urography -  a test that uses X-rays and a special dye to help assess the kidneys, ureters, bladder and urethra.

Intravenous urography (also known as intravenous pyelography) is an X-ray procedure which is used to assess problems in the kidneys, ureters, bladder and urethra. These structures make up the urinary tract. The ureters are tubes which go from each kidney to the bladder. The urethra is the tube from the bladder that

passes out urine.

The urinary tract does not show up well on ordinary X-ray pictures. However, with intravenous urography a contrast dye is injected into a vein ('intravenous' injection). The dye travels in the bloodstream, concentrates in the kidneys, and is passed out into the ureters with urine made by the kidneys.

The dye blocks X-rays so the structure of the kidneys, ureters and bladder shows up clearly as white on X-ray pictures The X-ray pictures produced are called an intravenous urogram (IVU), but can also be called an intravenous pyelogram (IVP).

The process of Intravenus Urography is very similar to going through an X-ray of any other part of the body.   I was given a hospital gown and asked to remove my bra as the underwire would affect the pictures.  I was then laid on a bed and asked to stay very still when they were taking the x-ray pictures.  After a few 'normal' shots, the doctor came to give me the injection of Contrast Dye.  It feels as any other injections, just a small scratch.  As the fluid is working round your body, it can make you feel warm as it's spreading and does give a sensations that makes you feel like you need to urinate but I assure you, you won't pee yourself!

The doctor then takes a few more shots and the whole process is over in about 45 minutes.

This is not a very invasive or uncomfortable procedure, in fact I actually fell asleep and had to be woken by the x-ray technician... embarrassing!!

My results came back as there being no problems with my kidney structure and this aided my consultant Nephrologist (Kidney Doctor) in diagnosing Loin Pain Hematuria Syndrome.

Loin Pain Hematuria Syndrome is something called a diagnosis of exclusion, meaning there is no test to prove you have it - it is only diagnosed when several tests and procedures show no other reason for the symptoms, blood in the urine and kidney pain.


In m next post I will speak about the beginning of my LPHS treatment and the doctors involved in it.

MRI Scan: Patients eye view

Before getting my diagnosis of LPHS, I had to go through several tests.

I will go through them briefly in the next few posts to give a better understanding of how they feel from the patients viewpoint.

MRI scan:
I’d only ever seen MRI scans on TV before, and I thought there was something worrying and almost sinister about disappearing into the tunnel, so I was pretty nervous when I got to the hospital.

Make sure you wear comfortable clothing, and if possible without metal fastenings as you’ll be allowed to go through the scanner in your own clothes then.  Sadly due to my bra underwire and jeans zip, it was backless gown again for me!

When you’re taken into the scan room, you are laid down onto the platform and a brace-type thingy is placed over the area they will be scanning – in this case, the lower abdomen.  The technicians then strap you to the bed in order to make sure you can’t move very much, and give you a buzzer – this is used to get the attention of the staff as once the scan is in progress they can’t hear you… the machinery gets pretty loud so they also give you some headphones to wear (You can even take along a CD to listen to if you prefer).

Once I was comfortable, the technicians began the scan.  They operate the machine from an ante-room off of the main room you are in, so you can only hear their instructions over an intercom system.  The platform you are laying on moves in and out of the main body of the machine according to the controls operated by the technicians – the inside of the ‘tunnel’ is just smooth white plastic – it’s not very dark in there as I thought it might be but it did feel a little claustrophobic.  I found taking deep breaths quite soothing.


Once they have you in the correct position, they ask you to take a deep breath in, breathe out half way and then hold it – this is when they will take the image.  A tip I figured out was to see how long the imaging takes on the first go, and then you know how long you have to hold your breath for on subsequent images – this helped as I find I can get a bit panicked when holding my breath without knowing when I will be able to breathe normally again.

The whole process is repeated over and over again and in my case I was there for 25-30 minutes.

All in all, it wasn’t the most pleasant thing I’ve ever done in my life but it was most definitely not as bad as I thought it would be, and anything that could lead to controlling my pain is completely worth-while.

I also had a CT scan during the investigations into my condition - the process is very similar to the MRI scan but the machine is far shallower so instead of going into "the tunnel", you are passed back and forth through something that resembles a large polo!

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. 

Words that show as dark red are clickable links - 

they will take you to a page with more information about that subject.

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