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Posted 3/8/2011 12:00 PM (GMT -7)
hi im new to the site . i have loin pain haematuria syndrome which has taken 2 years of tests to confirm. i keep looking for information on this condition as its not very common ! im so tired of the pain and the countless times im having to take off of work, people think its all in your head as they havnt heard of this condition and you start to feel like a fake.
Posted 3/8/2011 12:24 PM (GMT -7)
Welcome to Healing Well. I'm sorry that I have no knowledge of your condition, but everyone here clearly understands chronic pain and how it affects you. Basically, we "get" it and are here to listen and provide support when you need it. Hopefully someone will come along with knowledge of your specific condition and can give you information on what has helped them, but it may take a few days, so please don't get down if it takes a little while to get started with the responses.

I hope you will find the answers you need here. We're a very diverse and very good group of people, with chronic pain conditions of every kind and consideration.

Good luck!
Posted 3/8/2011 12:44 PM (GMT -7)
 

  Hello Jake! Welcome to the CP forum! wink

      I see that your condition is pretty rare and mostly affects women, and that surgery is sort of discouraged as a last restort. Did they also find blood in your urine?

      Are you on any pain meds for this? If not, I would suggest that you seek a Pain Management Dr.

       Good luck in your serch, and hopfully someone here will know more about it, although it is a pretty rare condition from what I read on it.

   SE wink

Posted 3/8/2011 1:39 PM (GMT -7)
hi thanks for your welcome. im trying really hard not to take too much pain relief which im starting to think is mad !  because they diont really know how to treat it ,its proving hard to find the right meds .ive been given buscapan which really wasnt good for me so i stopped taking it. 
Posted 3/9/2011 5:39 AM (GMT -7)
morning. thanks for your support paula. im hoping to get an appointment with the pain team so fingers crossed .
Posted 3/9/2011 3:06 PM (GMT -7)
Hi Jake and welcome to Healing Well's Chronic Pain Forum. I am sorry that you have to be here but very glad that you found us. At least by coming here you know that you are not suffering in pain alone, we all suffer and understand.

Several years ago here at the CP forum we had a few members suffering with LPHS and they were receiving appropriate medical care for their condition. Yes, I do remember it was really tough going until thy were finally dx'd too. It has been so long ago I cannot recall any of their names as they are no longer active here at the forum. What I suggest is to use our search option here at the top of the page on right. Type in either the initials and see what you can pull up, if nothing comes up then type in the full name. You may be able to glean some info from those posts. There were some drs that were very experienced with this condition and maybe you can get some names.

Before I forget, lol, you need to know there are two types of PM drs out there. One will do injections and procedures only, no medication. The other will do that and writes scripts for pain meds if he/she feels its warranted. So, once you find out who you will be seeing you need to chek with the office and make sure its not one of those guys that does procedures only. Anyway, I wanted to pop on and tell you welcome aboard.

Take care.
Posted 3/10/2011 8:36 AM (GMT -7)

Thanks for your post (straydog ) it sounds very encouraging. You know i dont need a cure i just want my life back ! well a bit of normality anyway rolleyes   everyone i have spoken to before joining the forum has been very negative so its sooo nice to here some positivity . I will check through the site as you have suggested. Thanks again

De.

Posted 3/10/2011 2:18 PM (GMT -7)
Hi Jake!!,
Welcome to the CP forum. Everyone here can understand pain. We all experience it in different ways and for different causes but it's still pain. It affects our lives everyday and changes the way we do things. It is a burden, depressing, and hinges on your life. We are all in the same boat. Although I don't know anything about your condition(I will look it up in awhile, just got home from work) I/we are here for you. Vent, ask questions, whatever helps you. It is a great place. I am so sorry we have to meet under these circumstance but I am glad to meet you just the same. Take care.Heather :-)
Posted 3/10/2011 11:27 PM (GMT -7)
Hi~

Just wanted to add my welcome to the list. I remember one of the persons that straydog is talking about who used to be here often. Matt Green was his name, I believe. He had such strength when it came to fighting through LPHS and helping others too. I believe he had some experimental surgery done where they move the liver (I think) to a slightly different location and often it helps the pain. He drifted away from the forum and I haven't heard from him in several years. Hopefully he was doing better.

I do hope you have some luck with battling this disorder. It's a pleasure to meet you and please stay in touch.

Warm hugs,
Chutz
Posted 3/11/2011 3:42 PM (GMT -7)
Hi Jake, I wonder if it was you who contacted me. I have LPHS & anyone can email me on alison.banister@ntlworld.com.
Chutz, It's autotransplant that you refer to where the kidney is moved down into the pelvis (not the liver). Unfortunately most of the time the pain returns after any treatment for lphs. The best way is to attain effective pain relief with the correct dose of opiates. I live happily with lphs & have many coping skills. My best wishes to you all :)
Posted 3/11/2011 3:44 PM (GMT -7)
Chutz. Do you know is it's possible to put LPHS as a main section in the main menu rather than a sub-section to Chronic pain?
Posted 3/11/2011 4:21 PM (GMT -7)
Your post resonated with me. I was just d/c'd from a two week hospital stay where the attending MD insinuated that I was exaggerating my illnesses and no one in the world could suffer from CP the way I was; well, I was very vulnerable and fatigued and allowed myself to feel bad, I allowed this stranger to tell me what I was and what I was not. After a week of home rest and trying to get stronger mentally and physically, I see this MD as totally inappropriate and damaging to my well being. Best suggestion I have, is you know what you feel and attempt to not allow anyone to make you to feel bad about yourself, b/c, for some reason, in all my years of CP/CI feeling guilty about being ill is the number one thing I'm always fighting myself about.
Posted 3/11/2011 5:02 PM (GMT -7)
Hi Allys!

Thanks so much for sharing with me and everyone else exactly what that treatment was. I tried to do a quick search but was falling asleep...lol It must be so frustrating to have such pain and so far the medical and research community can't do much for it except control the symptoms. It's the same way with Fibromyalgia that many of us suffer from.

As far as adding sections/sub-sections go, you would have to ask the owner/admin about that. For a long time we all offered suggestions for forums when he was thinking of expanding but since space/money is limited he carefully chose the ones he thought would serve the most people. I will ask about sub-categories because I know some software does work that way. If nothing else we could try to keep a thread going on it and if you'd like to help just let me know.

I was curious just how many cases of LPHS there are world-wide so I went hunting for facts. Here's some of what I found and a link to the source. I hope this helps others understand what LPHS is and just how serious and miserable it makes your life..

Warm hugs,
Chutz

Loin Pain Hematuria Syndrome (LPHS) is an extremely rare disease, where there is unexplained flank pain and Haematuria. Often misdiagnosed as a hypermobile kidney has the same symptoms. This is poorly understood condition for which specific diagnostic criteria are lacking.

Here are some facts about LPHS:
# LPHS was first identified in England in 1967 among women who were taking birth control pills.
# Approximately 90% of the reported cases of LPHS are female.
# LPHS was first noted in men in the 1980′s.
# LPHS was first noted in the USA in the 1980′s.
# The first renal autotransplatation for LPHS was done in 1982.
# Cases of LPHS have been reported from England, Canada, USA, India, Australia, Ireland, Scotland and Germany.
# The age range for LPHS is from 6 to 50 years.
# There are approximately 200 cases of LPHS in the world; no doubt, there are more undocumentated cases.

lifeinpain.org/node/376?q=node/376
Posted 3/12/2011 3:28 AM (GMT -7)
hi thanks to everyone for taking the time to help me out .... thanks straydog for helping get in contact with Allys , she has given me some useful links so im hopeful in getting to know what is going on with me. Always grateful for all your help.
De
Posted 3/12/2011 7:23 AM (GMT -7)
Chutz, Thanks for that info. I personally don't think it is rare as a Urologist who is aware of lphs diagnosed 5 new cases in his first week in the UK!  You were on healing well when I used to post frequently in the days when there were more of us on the site. Now there are lphs specific Facebook pages there seem to be lessof us on this site. I will check out for any requests re lphs & steer them in the right direction. I see there is a kidney section as well as chronic pain so that works well. I was thinking of asking for a new section for lphs but I thinkthat the ones they have cover it. I guess most people would search under kidney or pain.

I feel we are ine xciting time re pain treatments. There is a new study done in London re Neuromodulation (an internal TENS machine) giving all 4 people with lphs total pain relief & they went back to work! If you would like to read it email me at alison.banister?ntlworld.com & I can send it to you.

Alison

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