I need to know more!

Retroperitoneal Fibrosis
#1

Please If I don"t spell something write please leave me a note so I can correct it.

I have been going threw my problem now sent July 2007.I have read just about every thing there is on this Rare Disorder!I need more infomation on other Doctor that deal with this very rare disorder.And someone to tell what my out come maybe like.As now,I have not had much of a life for about 3 to 5 years.

Other things i would like to Know.
1.How many men at this site cause of this disorder have had problems with there testcles swelling?
2.Sex problem with this disorder?
3.Sleep problems,cause of the hurting.(pain meds seem to not help)

The reason I am asking cause I just don’t think the Doctor I am seeing is right for me.Please and If i have said any thing out of the way here,I am sorry and will remove this subject!

#2

h there
got your email sorry to here that things are not going well for you i have had rpf sence DEC05 and let me say that its no picknic thats for sure where do you happen to live iam in toronto canada why dont you give me your email and i will get back to you asap sometimes its easeryt to use our own emails
tks
wade

Mighttuss rpf-cpt6273@lists.careplace.com wrote:

#3

wade wrote:

#4

My address us hurley40403@adelphia.net! You see people talking about his problem,but never not one thing personal.I think to a point personal some time is very useful in some case.The next person that comes along with this as a new problem,May find some personal information Like I am wanting to know about useful.
I live in Berea Kentucky,the blue Grass state!I talked to my Rheumatology today about this Testcle problem she took a look and said I don’t think this has any thing to do with RF!
It is very pain,feels like someone has hit me there.Swell and some what hang down at time.Mostly when I have been up and moven around alot.My legs swell as well,hurt very bad.I have to wear my shoes lose too.Cause my feet swell.
Pain in lower abs,more to the left side,affect hips as well,more on the left side.Pain across lower back,some time I feel pain on the left side up maybe 1 in. from hip.When this pain is in back 1 in. from my hip,I have some what a slow start peeing.Blood as been in my pee for over 4 years,leg pain and swelling as well.
The tender spots are all over my upper belly and abs,just like some one has beat me up.

#5

Hi all,

I’m definitely not a male sufferer so don’t have the specific problems being discussed in this thread, LOL but I do think it’s a shame to take any topic off list even if it is a personal and possibly embarrassing one.

There must be new members who would love to ask these questions and get some answers and if the discussions are taken off list, they may be put off asking these more personal questions.

I’m sure us girl sufferers have problems with RPF that are limited to the female gender too which could do with discussing on the forum. :o))

Jan (UK)

Diagnosed March 2006.

#6

Hi Jan (UK)
You are right! I want to no more about it all.That why I start talking about this problem upsetting me.Just to see if there maybe other having the same problem as me.I call my problem a sex problem.
And Jan you are right as well,female do suffer the same problem.I did a search and found some information on the sub -ject that may help.But I want to know if other was facing the same problems as me.Jan please take a look at this link!
I more or less answed my question.The only thing is it does not bring up RF,unless I over looked it!

#7

I have been doing some study on and reading alot about RF.And have found some answer to my question that other could not answer.RF does in fact mess with the male reproductive parts,So I no now i have not lost my mind.There is so may part with in the human body this disorder can attack.For example I have notice a few male guys saying the word prostate,Prostate is a part of the male reproductive system.There for why would your scrotum not swell?So here my punch line,it would in some case.what I am pasting here is from a web site!
Clinical Details: Most patients present with nonspecific symptoms of less than 12-months’ duration. Children may present with hip or gluteal pain.

In the early stage, signs and symptoms originate from the disease process; in the advanced stage, clinical features represent the effects of obstructive uropathy and renal failure. The most common presentation is pain (92%) occurring in the flank (42%), the back (32%), the scrotum (8%), or the lower abdomen (28%). Other presentations include fever, weight loss (38%), nausea and vomiting (32%), malaise (18%), polyuria (18%), polydipsia (18%), anorexia (15%), nocturia (13%), oliguria (10%), urinary frequency (8%), and hematuria (2%).
You can read full detail at this site.
http://www.emedicine.com:80/radio/topic605.htm
As well I have add a some what detail of the male reproductive
http://www.kidshealth.org/parent/general/body_basics/male_reproductive.html
1.male reproductive!!!
If you are just looking up the body part that the doctor said was mainly affect and what the CT/MRI is showing,you should look for some more information out there.And just maybe you should ask your Doctor what part of my body will this affect?And I hope in no why does anyone think I am trying to be a know it all,but I need answer?And the information your looking for just maybe some Doctor can’t answer cause they really don’t no!

#8

RF is more common in men than women. I have RF too and when I found out I was freaked out. Have you checked out the yahoo Retroperitoneal Fibrosis group? They have tons of information and support. Hope you get your awnsers soon.

Teresa