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This Forum is for patients who suffer from Loin Pain Haematuria Syndrome, their supporters and friends. We also include those who also have IGA and IGM as they are closely connected.
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Title: Newie!
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ecl
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Score: 6
Posts: 6
Registered: 19/04/2007
Time spent: 0 hours

(Date Posted:29/04/2007 13:04:51)

Hello to everyone.It has taken me ages to work out how to write a message! I hope this is working!!Just to introduce myself ...... My name is Emma andI have a history of kidney problems due to a PUJ obstruction and a kidney that has never grown properly and functions 25%. I have had 2 pyeloplasties on my right kidney. My last operation was 2004. I seemed to be fine for the next 18months and then Feb '06 I was in hospital with severe loin pain. This happened again in August, and since then I have had loin pain which gradually became more frequent. Now I have about 5-7 days pain free, not even a niggle, in one month! Last week I saw a Doctor ( Anaethetist ) for pain control. My 'baffled' ( my words! ) Urology Consultant referred me to him to see if it could be my subcostal nerve that has been causing me pain. If so then I could have an injection to deaden the nerve completely. The Dr Pain Specialist found that my subcostal nerve was not causing the pain. So, I am now back to square one and wait to hear what my consultant will suggest next! At one point in December, he had mentioned the possibility of LPHS but never said any more about it. I am somewhat uptight because it was suggested that my kidney should be removed and then not removed!Anyhow. I wondered if there was anyone 'out there' who has had a history of kidney problems/operations? and now faced with the LPHS question!Glad I've joined the forum.Emma

Kim Hughes
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Registered:01/06/2003
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(Date Posted:06/05/2007 06:28:36)

Reply to : ecl

Hello to everyone.It has taken me ages to work out how to write a message! I hope this is working!!Just to introduce myself ...... My name is Emma andI have a history of kidney problems due to a PUJ obstruction and a kidney that has never grown properly and functions 25%. I have had 2 pyeloplasties on my right kidney. My last operation was 2004. I seemed to be fine for the next 18months and then Feb '06 I was in hospital with severe loin pain. This happened again in August, and since then I have had loin pain which gradually became more frequent. Now I have about 5-7 days pain free, not even a niggle, in one month! Last week I saw a Doctor ( Anaethetist ) for pain control. My 'baffled' ( my words! ) Urology Consultant referred me to him to see if it could be my subcostal n

Hi Emma,

I'm glad you figured out how to write on the forum.  :-)  It seems like everyone else on the forum has forgotten how to write!  Where is everyone?  I know people are looking at the posts.  Hmmmm. 

I started having pain when I was 14 that came about every 10 months and lasted for about a week.  Then when I was 23 it became constant.  I was diagnosed with LPHS when I was 27.  I have also had kidney stones since my mid-teens and numerous urinary tract infections.

At one point we had a database on the LPHS web site.  Clicking on the "LPHS International Organization" logo at the top of the page will take you to it.  Unfortunately, when I clicked on "Information" or any of the other links I get an error that the page cannot be displayed.  Hopefully that can be corrected soon.

I hope you can find answers soon, Emma.  Good luck to you.

Kim

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