Bladdertroubles.....
 

For a few weeks now, I have horrifying pains in my bladder..... it totally ruins my life and since I have a cathether (Supra pubis through my belly) I went to see my urologist and she examined the bladder through a scope, which was extremely painful, but she cannot find a cause for it...... sometimes pure blood goes through my cathether too...... it is ruining my life to have this (I can actually neither sit up nor lay down for an amount of time and I have even worser sleep patterns through that) and although I have RSD spread through my body I never had that much pain in my organs. I did have liverpains after they removed my galbladder but they are good handle with my painmeds.
I also noticed that the RSD is spreading to my head, having had my first migraine this week, having jawproblems and hairloss, which grows back real fast too........

I am wondering if anyone has any experience in this area and if maybe a nerve block could be the solution? I am already starting a diet that hurts the bladder as less as possible (since the cathether does damage the lining of the bladder), but am at loss what to do with these pains and how to handle them...... our house is a mess because hubby spends all his time trying to distract my attention by watching movies with me, reading with me, laying down half of the day...... he is at loss what else to do for me when the pain gets too high...... last night he sent me shopping on the internet for a CD I really wanted....... :) but it's hard on him that we hardly can go out now... although he keeps on telling me he likes it because of his age..... :D but I know he is hurting because of this..... and even though I know it's not my fault I feel guilty........

Any help would be appreciated.....

Love,
Mieke :hug:

Dearest miepie,
Let me for start and tell you I have full body rsd with some of my small intesent removed because of a bad hystercetomy at age 27 Im 39 know I lived on feeding tubs for 5 yrs and almost dieingmany times and being on a vent to breath in the hospital because a blood clot let go into my lungs .I have a just the 29 of Airl 15yrs old son just finsihed a divorce a really bad one almost 30,000 it cost me............with rsd tht camt work I just wrote a long letter you should really read Im having problem with my bladder and stomach and stiffness in my hands and fingers. I wonderstand everything you fell I was a hospic nurse my x is an peace officer/nurse and he couldnt handle the pain I am dealing with the last 6 months it started with my bladder no control now its my stomach along with my bladdder I lost my boyfreind that I was with for a yr .He moved before I had to stay and finish court I flyed to Oregon to see him and that then he saw my stomach unable to control he just finished a 20 yr marriage 3 yrs before and he had cancer 1 1/2 before we were together he made it but Im all alone buut my son know one anymore to help hold love touch soft teach me to live Im in a wheelchair and a cast for almost 4 yrs .My rsd moved within 1 yr I was in a chair fighting it 1 yr later and my cast has been on for 4 yrs also I cant walk anymore. On my son birthday I losed control at a restuarnt with my stomah I was in the restroom crying it hite me at 39 I will never date fell love be touched it hit me hard. I am starting to be a shell with a mussy brain but want to do things but just cant please read I need help from me that I just did on the !st of May that says more then if you want email me. I would love to know you more if you want........................... best wishes to you and I understand but I dont know what to say we both are in close places........... Take Care.............. karen

Karen, I just sent you a pm with my emailaddress. I hope we can become good friends.... :hug:

Love,
Mieke :hug:

Thank you miepie,
Thank you so much I know you will became good freinds .I will email you on Monday after I get some sleep its 5:00am I only have 1 hour before I have to get up for my son for school and I dont know how to give you mine email so I will email you . so after I get some sleep . Thank you so much .I think we really need each other more than ever. BOTH of us

God bless you Best wishes.Talk to you soon I hope this makes sencs Im tierd................Karen

Hi miepie,
Thank you so much, I dont know how to send you my email so I have to be up in 25 minutes with no sleep to get my son up for school. So after I get some sleep I will email you with my email. I know we will become great friends. We need each other .we BOTH do. Im here. I will email you soon today Monday Calif.time. God bless you........Take Care Karen

Hi,
 

I was just wondering if you have been checked for Interstital Cystitis. That is a bladder disease.

I have it and the pain is so bad, you can't sit, stand, or lay down.

I have had treatments to calm it down for about 5 years and I have seen quiet a bit of relief but I still need my Methadone to calm it down.

I will try to find you a website on it but in the meantime if you type it into search then you will find some good info on it also.

It's a hard one to diagnose. it took me years to even get it diagnosed.

Sorry to hear that you are having such a bad time with this bladder pain, I sure can relate with you.

Ada

dreambeliever128,
I was wondering if you can tell me something does it start ouy with having no control not knowing and then you cant stop? I had a bad 2 hysterectomy in 95 at age27 they didnt say that things can drop. I didnt hav aby problems intil 6months ago it started slow now I am just starting to have pain sometimes I just thought that Its when Im sick but it will stop after a few weeks but then like now with my rsd so bad evverything is always that my dr says .So if you can find that address or anything can you let me now.I will give you my email if you have anything on this I have nothing left...Thank you so much you both need help Karen