Loin Pain Haematuria Syndrome

hi there; im new to this website.
I have loin pain haematuria syndrome, iv suffered for the last five years.
Iv just been discharged from hospital, in time for my 19th birthday.
Im also investigating hypermobile kidneys; as a friend who was diagnosedwith LPHS has found out thats what was wrong with her.
Im seeing my urlogist tomorrow. Hopefully he can give me a lying & standing ivp.
Im currently on sevredol 20mgs every four hours, although when i have severe pain attacks i take it half hourly.
Im just interested in meeting other people who know what its like, im also on anti depressants. Sometimes i find it hard to cope, i have good days &bad days.
Feel free to email me erinrose@ windowslive dot com

thanks; Erin

Hmm, well loin pain haematuria syndrome is where my kidney bleeds, i got diagnosed by my urlogist putting a camera into my kidney - as the blood clots pass to my bladder, it causes the most intense pain ever. Im on morphine, and have tried a huge range of different pain reliefs. At the moment the sevredol isnt working that well, i need to sort it out as the pain is getting unbearable.
Tomorrow i find out if i can be tested for hypermobile kidneys, where the kidneys move the uterer kinks and causes pain. That can be fixed by stitching the kidney in place. The only thing you can do for lphs is pain management, there is no cure.

Anyway, if anyone has any questions just ask.
Erin xx

Wow !! How severe is your pain? What medicines are you on ?
You have 11 children, it must get hard.
Nice too meet you Ibby. My names Erin :)

Thanks, yeah theres alot moreto pain then people think.
Iv been really bad today, used numerous heat packs, had showers and slept. Its still not better. Times like this i find it so hard to cope &stay positive :(

    Hey baby! See, I just knew you would find someone here that had some knowledge with what you are suffering from. Hang in there, and post here often, as there is a lot of support here!

Babycakes,
I've noticed you've been asking about medications on other threads. Please be careful about asking your doctor for a specific medication, as this can be a red flag for drug-seeking behavior for some doctors. It's best to discuss your symptoms with them, and tell them how whatever medication you're on is/isn't working. If you want to discuss short-acting versus long-acting medications and ask them in general terms, that's probably ok, but if you go in asking for oxycontin you're liable to get some raised eyebrows.

And even though this group has a lot of experience with medications personally, we're not doctors and medications affect everyone differently, so be careful about getting anything more than opinions (not fact) from any forum. There are a lot of helpful links to sites that our moderator, Chutz, recently put together for us in the CP101 thread, which is at the top of the postings. That thread is just for information, and not to post to, but you might find some good links there.

What this group is superb at is providing support, and I'm so glad you're already finding some common ground with people.

Nice to have you with us, but sorry you have to be here, especially at such a young age.

PaLady

Seen my urologist this am, having another scan done next week.
Thanks palady. I have tried oxycontin, amoung other long acting pr but they all made me super sick. At the moment nothings working so im willing to try anything - i will talk to my dr about it
You are all so supportive i really do appreciate it
espically on bad days like today :(

xx

Thanks :( just rough day, pain bad, little sleep, had plans to go shopping
blegh :(:(:(:(
its rly nice to have your support, thanku from the bottom of my heart
xx

Thanks, i have spoken to palady.
Ill check out the koffee klatch, chats might be difficult as im from new zealand.
xx

Babycakes,
It's so cool to meet people from all over the world! I think somewhere there's a chart that helps people figure out the time in various time zones around the world. I have no idea what time 9pm Eastern Standard Time in the U.S. would be for you, but maybe someone does!

PaLady

Yep! That sounds doable unless you're working. Probably your employer wouldn't like you in a chat for an hour during the work day! LOL

PaLady

Hi Babycakes and welcome!!

I've never heard of your kidney disease either. I'm sorry you are having to endure the pain though and hope it can be resolved and soon.
This site is awesome and at least you never feel alone, it's nice to have others that are experiencing the same things, maybe not the same area of the body but pain.

I'm not sure but think you all are about 18 hours ahead of us on the time thing. Hang in there kiddo and keep us informed.

Cathy

Babycakes,

Sorry to have been MIA for a bit. You have received some very kind replies here and the folks on this forum really do understand what living in chronic pain is like. But for me, it was so helpful to speak with someone who suffers from the same disease. I have a few friends who also have LPHS (folks I have met here years ago). I would be happy to try and put you in touch with some of these people as well.

Please know you will be in my thoughts and prayers.


Ibby