Hi, my name is Linda, I'm 26, I live in Brisbane, Australia and I've recently been diagnosed with having LPHS.
I have had kidney problems and "infections" all my life, but was always told there was nothing wrong, or told to go on antibiotics - which never helped.

I would love to hear from anyone regarding their experience with LPHS, in particular if there is anyone in Australia with LPHS who could get in contact with me. There is only so much I can find on the internet, and knowing I'm not the only one out there would be a big support.

Well, here's my story so far:

Major turning point that made Drs start to think that I had a kidney problem was when I developed pre-eclampsia when pregnant with my child in 2004. This resulted in me being admitted to hospital for 6 wks prior to having an emergency caesarean at 34wks (my child was born 6 wks pre-mature, weighed 3 pounds, was quite ill and spent 5wks in intensive care) Afterwards, I spent another 2-3wks in another hospital with major problems, mainly to do with high blood pressure and my body being "filled" with toxins coming from my kidneys (I gained 15kgs in toxins/swelling/fluids in less than 3mths).

I had a biopsy on my R kidney, while in hospital but the result was inconclusive... My kidney specialist moved overseas a few wks after I saw him and the only other specialist in the area only saw older people (my 70yo grandfather is a patient of his) and told me to "go loose weight and I'd be fine". I refused see him again.

Unfortunately, I have suffered pain ever since having my child, and no matter how many Dr's I saw, no-one could give me an answer. (I have urinated in to so many bottles for tests it's not funny. The nurse doesn't even bother to give me instructions anymore)

I have been diagnosed with numerous other problems in the past three years (I would love to know if anyone else has similar probs). I have osteoarthritis, scoliosis, bone spurs, pinched nerves, high blood pressure, eczema, am lactose intolerant, and have food intolerances - just name a few... (At one time I was prescribed 8 different medications. Lucky I had the sense to ask my Pharmacist which reacted with others and now refuse to take five of them as the combination could cause MAJOR heart failure without notice.)

I had to leave my p/t job after 1yr because of my kidneys bleeding & my constant dizzy spells/pain/nausea/headaches etc.

I moved interstate to about 2yrs ago and tried doing a temp job but my blood pressure sky rocketed to 164/140, collapsed and was rushed to the Dr. "Nothing wrong. You're not pregnant. Go home and rest" No meds, no follow up and treated me like an idiot whenever I went back saying my kidney hurts. So I switched Drs/practice.
New Dr was good for a few months, then he started to ignore me when I saw him. Kept on saying I was in pain, my L kidney hurts but thought I was after drugs. (The opposite is true - I HATE taking meds.) Actually told me "if you have a problem go to the ER and they can help you" when I saw him last.

Was admitted to hospital soon after when I'd collapsed at home.  My body had filled with toxins, I couldn't make sentences, was disorientated, seeing stars, had HIGH blood pressure, pulse racing and the usual blood in the urine.
After 18hrs, numerous tests, a saline drip and a LOT of waiting, was discharged with the diagnosis "nothing wrong with your kidneys. Its your gall bladder. Go see your GP"
I KNOW where my kidneys are and where my gallbladder is and the pain was not there. Apparently when you point to your back where your L kidney is located, that means you have gall stones these days - just thought you might like to know...

I have kept a diary for the past 12mths of my symptoms, Dr appointments, hospital visits, meds etc so I know I'm not going mad. I figured that if I showed this and a pattern was obvious, I might get a diagnosis. I now see 4 different specialists & my GP. I have had numerous scans, ultrasounds, xrays, urine tests, blood tests but still nothing.

Started seeing a different Dr (same practice), who actually listened to me, ordered some testing and took my history.
Yes there is blood in my urine. No there is no infection. No you are not pregnant. Could not explain why I had been having dizzy spells and collapsing for over 6wks, or why I was always in pain. I insisted on seeing a renal specialist and the dr arranged an appointment in less than 6wks!! (Normal waiting time was 6-12mths)
After one visit my renal specialist told me that she believed I had LPHS, but didn't know much about it and would ask a colleague at a different hospital for advice.
My GP actually laughed when I told her what the renal specialist had diagnosed - she thought it was fake.

After 2nd visit to the specialist and a scan of the arteries to my kidneys, I started a "trial" of tritace in conjunction with Noten to see if the pain &/or duration was any less.

Felt fantastic when I first took the tritace at night - felt better than I had in over 3 yrs. Unfortunately, it only lasts for 12hrs and I take it at night.
When I had my first "episode" while on Tritace - OMG! Both kidneys at same time, felt like I was being stabbed constantly and the knife was being turned. Could not stand, walk, breath or talk properly. On the flip side, the episodes didn't last for weeks like normal.

Am still on my 3mth trial for Tritace. I am trying not to use painkillers, as I can only take panadol or panadeine (codeine) due to other meds. I get really angry and tired when I'm in pain, but I need to make sure that I don't build up a tolerance for the "painkillers" (they currently do pretty much nothing). Can't take arthritis meds, so just have to put up with any pain. Am due to see my kidney specialist again in about 2wks time.

Well that's pretty much my story so far. I find that when I'm stressed my L kidney starts hurting more. If I do exercise I can't walk properly for 3 days after. I have an extremely active 3yo toddler, so trying to keep calm, or not run around is pretty much impossible. At least bub now understands when Mum doesn't feel too good and tries to "help". Find that drinking Gatorade helps with the headaches and nausea side of things but need to check if its ok to take with the tritace.

Thanks for reading my story. Sorry for writing so much - feels like a weight off my shoulders having written it down!

I hope to hear from other people who have been through a similar experience and would appreciate any advice given.

Thanks for your time.
Regards, Linda Apps