Retroperitoneal fibrosis

Hope this is going through the proper chanels. Need advice and suggestions to help me through my ordeal of uethral stents. My doctor said he has done all he can to handle my pain and discomfort. Unaccetable. I would appreciate any input. Thanks.

put wrote:


This site is for support for those diagnosed as having RF (or RPF) or caring for same.

Your note doesn’t indicate your diagnosis.

Be that as it may, I’ll toss in a bit and see what you think.

One of the consequences of RF is constricted ureters which reduces or stops urine flow to the bladder and thus can cause irreparable harm to the kidneys. This effect is what must not be allowed to happen if at all possible which is why stents or neph tubes are used to drain or help drain the kidneys.

The pain of the constrictied ureter can be off the charts. The pain from stents is nothing compared to that. But they can be a pain all by themselves.

How long have the stents been in?

Are there two or just one?

What are the stents in for? (diagnosis)

What other symptoms did/do you have?

Where are you?

Where are you being treated & by whom and is/are they familiar with whatever disease you have been diagnosed with?

If you have RF, you might take a peek at a couple of the other sites which support RF sufferers:

This one has a couple dozen members and rare posts (activity),

Google group at which lists 39 members last time that I looked and also is not very active, or the “original” Yahoo group (which was founded by David Hughes who now works for Careplace):
This group has over 400 mambers and has multiple posts every day. Its activity might overwhelm you at first. The members will respond as i did by apparently being nosey, but the purpose is to help get you the care that you need and to answer your questions.

Hope that this helps and if you’re Stateside HAPPY TURKEY!

Connecticut, USA