Loin Pain Haematuria Syndrome

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babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/10/2009 5:29 PM (GMT -7)   
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

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/10/2009 8:50 PM (GMT -7)   
   Hello Baby! Welcome to the CP forum! I don't know anything about your condition, but I'm sure there are many here that do. You will love this site, as there are many wonderful members willing to help and support. Hang around, and I'm sure a moderator will be along soon to welcome you also. If you could please tell us a little bit more about your condition we would apprecicate it. Make sure you check here often through out the day, as you may recieve several responces. Have a wonderful evening.

babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/10/2009 9:32 PM (GMT -7)   
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
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.


mysweet10
Regular Member


Date Joined Oct 2005
Total Posts : 69
   Posted 11/11/2009 12:18 AM (GMT -7)   
Hello Babycakes! I haven't been on this forum/website for several years, but I felt the need to get back here today and be with people who understand. I also have LPHS. It started suddenly, six years ago today actually. So I wanted you to know I do understand!! I am the mother of 11 children, struggling to be good at everything and sometimes failing miserably.

I am looking forward to getting to know you better and reconnecting with some old friends here!


Ibby
I have LPHS and lupus symptoms.
 
"For those who believe in God, no explanation is necessary.  For those who do not, no explanation is possible."


babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 12:26 AM (GMT -7)   
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 :)
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/11/2009 12:30 AM (GMT -7)   
Hi, babycakes,
I just wanted to add my welcome to the chronic pain forum, but I don't know much about LPHS except I knew there were a few older threads about it. I am glad that mysweet came back today - just in time so you found a friend who understands!

But the rest of us do understand pain, so I'm glad you're both posting.

Again, welcome.

PaLady

babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 12:53 AM (GMT -7)   
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 :(
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 11/11/2009 5:04 AM (GMT -7)   
I'm curious to know if this affects both of your kidneys or just one? If it affects only one can they remove it to relieve your problems? I hope you and your doctor find something out with your testing today. Good Luck!!!
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/11/2009 11:05 AM (GMT -7)   
    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-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 11:19 AM (GMT -7)   
It only affects one, and as the kidney is fully funcioning and because of my age they wont remove it. In most cases of kidney removal or auto transplant (putting the kidney into the pelvis) the pain and bleeding develops on the other side.
Im hoping iv been misdiagnosed; and have a hyper mobile kidney as that can be fixed by simply stitching the kidney in place.

Thanks for the luck, ill probably need it :)
&yes i will post here, its nice to get understood for once.
xo
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.
Im 19 &from New Zealand. Have had LPHS for five years.
Taking fluox for depression, sevredol for pain relief, cyclazine & maxalon for nausea, losec for stomach ulcer. Looking for long acting PR.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/11/2009 12:18 PM (GMT -7)   
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

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 11/11/2009 12:27 PM (GMT -7)   
I have never heard of LPHS.  It sounds awful!!!  I am very sorry.  I am glad I know about this.  I don't think I can be of any help but I wanted to voice my support.  I hope you can get this under control for you and you can get back to living. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 3:06 PM (GMT -7)   
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
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.
Im 19 &from New Zealand. Have had LPHS for five years.
Taking fluox for depression, sevredol for pain relief, cyclazine & maxalon for nausea, losec for stomach ulcer. Looking for long acting PR.


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/11/2009 3:13 PM (GMT -7)   
Hey Baby! Stick with us, you will love this site, wonderful members here. We all have our bad days, and this is the right place to come and tell us about it. I too have my bad days, as well as the moderators, and veteran members too. Your not alone at all here. Hang in there, were rooting for you!

babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 3:22 PM (GMT -7)   
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
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.
Im 19 &from New Zealand. Have had LPHS for five years.
Taking fluox for depression, sevredol for pain relief, cyclazine & maxalon for nausea, losec for stomach ulcer. Looking for long acting PR.


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/11/2009 3:39 PM (GMT -7)   
Baby, you can always count on us. There are several members here that I'm fond of, PaLady, Momto6boys, White Beard, Dani Henson, Chutz, and so on. I didn't mean to leave anyone out here, but the list could have gone on forever, and I needed to stop somewhere! :) If you get a chance and they have a Chat Night, make sure you join in if you can. It's lots of fun there, and you can see everyone at the same time. Also, one thing that helps me a great deal during the day, is the daily Koffee Klatch time. Make sure you read it and join in with whatever it ask. It will, and can make you laugh with some of the responces there. If you have any questions at all about the forums, please feel free to contact any of the moderators, and give them a little time to reply, as they have their hands full here. I hope you make this your new home, and consider us your new family away from home.

babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 3:44 PM (GMT -7)   
Thanks, i have spoken to palady.
Ill check out the koffee klatch, chats might be difficult as im from new zealand.
xx
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.
Im 19 &from New Zealand. Have had LPHS for five years.
Taking fluox for depression, sevredol for pain relief, cyclazine & maxalon for nausea, losec for stomach ulcer. Looking for long acting PR.


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/11/2009 3:52 PM (GMT -7)   
WOW! New Zealand! Thats great! Well...if you can get it to work out, that would be wonderful.......and I will look for you there. Isn't this site the Best! :)

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/11/2009 5:12 PM (GMT -7)   
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

babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 5:23 PM (GMT -7)   
I think its about 3pm my time, cool huh :)
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.
Im 19 &from New Zealand. Have had LPHS for five years.
Taking fluox for depression, sevredol for pain relief, cyclazine & maxalon for nausea, losec for stomach ulcer. Looking for long acting PR.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/11/2009 5:28 PM (GMT -7)   
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

babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 5:35 PM (GMT -7)   
Nope - not working
study from home so no problems :)
Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.
Im 19 &from New Zealand. Have had LPHS for five years.
Taking fluox for depression, sevredol for pain relief, cyclazine & maxalon for nausea, losec for stomach ulcer. Looking for long acting PR.


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/11/2009 5:50 PM (GMT -7)   
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
Cathy
 
Ileo June 2009 due to UC that was caused by c-diff


babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/11/2009 6:36 PM (GMT -7)   
hopefully - at the moment there is no cure. but if i have a different condition which im being tested for then it's easily fixed.
It's really nice having people; who understand.
 

- erin xo

Loin Pain Haematuria Syndrome - A Painful & Rare Kidney Disease.

^.^ ^_^ >.< ~.~ -_- -['.']- o.o +_+ @-@ ~^^~
____________________________


mysweet10
Regular Member


Date Joined Oct 2005
Total Posts : 69
   Posted 11/25/2009 10:37 AM (GMT -7)   
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
I have LPHS and lupus symptoms.
 
"For those who believe in God, no explanation is necessary.  For those who do not, no explanation is possible."

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