ruko4
10-26-2004, 01:42 PM
Hi everyone it is me again, ruko. And I have had alot of tests done including cat scans , mri's, ultrasounds, cystoscopy, numerous blood and urine samples, semen samples, and many mores tests. Also we tried all sorts of other drugs before starting the opoid pain killers in an attempt to help me live a some what normal life. I have seen 5 different Urologists all saying that they can't find anything and that I do not have cancer. Most just call my condition Chronic Pelvic Pain which basically means they are not sure. I have also seen a Gastrointestinal doc who does not know either. So now I see a pain specialist so it is nto like I have not been through all of the tests first before being referred to a pain specialist. And I do understand that I am on Narcotics and that they are addictive but at this point I have no choice if I want to live SOME WHAT normal again. I do hope that some day I won't have to take meds and the doc's can find a diagnosis and be able to cure it but until then I will pick the med's and the masking of the pain over the pain any day!! Thanks you guys for your input I do apreciate it, and I hope to hear back from you guys again, have a good day.
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twisten
10-26-2004, 01:53 PM
Hi Ruko. Sorry to hear you're having so much trouble getting a diagnosis. The only suggestion I have is to ask if you've had any abdominal surgeries? I'm thinking if you have that it may be scar tissue causing the pain. Again only a theory. I sure hope you find something out soon but I'm glad they are at least treating your pain.
LOVEQ
10-26-2004, 04:03 PM
Ruko:
Have the tested you for Interstital Cystitis????
If not look it up and see if this is you???
Have the tested you for Interstital Cystitis????
If not look it up and see if this is you???
Pikkaso1980
10-26-2004, 04:44 PM
Ruk,
I feel ya! i feel ya all to well. I have some gret info for you, but i don't know if we can add websites to this? I have had the same thing, and have tried everything just as you. But remember this my dear friend, Always Always remember we are here for you, and there is always hope.
I feel ya! i feel ya all to well. I have some gret info for you, but i don't know if we can add websites to this? I have had the same thing, and have tried everything just as you. But remember this my dear friend, Always Always remember we are here for you, and there is always hope.
LouiseM
11-13-2004, 11:20 PM
Endometriosis? You will need surgery to find out for sure if you have it. Have you had a lap done?
trowftd3
11-14-2004, 05:15 AM
Louise,
Um, isn't endometriosis a female condition??
Shawn is a guy I believe. Correct me if I'm wrong but I do believe he mentioned testing his sperm.
Shawn,
I have to ask, like LOVEQ, if you've ruled out intersistial cystitis?
I know it's more common in women but I think men can have it too.
From the little I know it's takes a long time to get a diagnosis and is very, very painful.
No one wants to go down the lifetime narcotic path but you gotta do what you gotta do to have some quality of life! Am I right kids?
Please keep us informed on your search for a diagnosis. I'm in the same boat with pain but no diagnosis(lung).-Mush
Um, isn't endometriosis a female condition??
Shawn is a guy I believe. Correct me if I'm wrong but I do believe he mentioned testing his sperm.
Shawn,
I have to ask, like LOVEQ, if you've ruled out intersistial cystitis?
I know it's more common in women but I think men can have it too.
From the little I know it's takes a long time to get a diagnosis and is very, very painful.
No one wants to go down the lifetime narcotic path but you gotta do what you gotta do to have some quality of life! Am I right kids?
Please keep us informed on your search for a diagnosis. I'm in the same boat with pain but no diagnosis(lung).-Mush
twisten
11-15-2004, 12:04 AM
Totally agree Mush. If opiates are what it takes for a person to be able to lead a 1/2 decent life then so be it.
LOVEQ
11-15-2004, 02:50 PM
believe me it took me a long time to get to that point, but I would rather be on Nacotics then to be in pain so bad I can't get out of bed.
I have IC and it took me so long for the doctors to figure it out..... Yes guys can get it . You should see a Uro and tell them that you heard of IC and could it be that. Now make sure before you go and see a Uro that they know what IC is, cause the ones that don't or kind of do will not know ****......
Please let me know if you have any questions. I will be happy to help you.
Best Regards,
Stacy Quinlan
I have IC and it took me so long for the doctors to figure it out..... Yes guys can get it . You should see a Uro and tell them that you heard of IC and could it be that. Now make sure before you go and see a Uro that they know what IC is, cause the ones that don't or kind of do will not know ****......
Please let me know if you have any questions. I will be happy to help you.
Best Regards,
Stacy Quinlan
ruko4
11-16-2004, 09:22 PM
Thanks guys, I am waiting for some tests to be performed to see if I have IC but I do have to wait a few months, that is the one thing that I can think of that I have not been tested for, only because it is almost always found in women. I am also finding it hard to find a drug combination that is effective against the pain I am having. Anyway gotta run just a quick post to say thanks for the replies!!
Pikkaso1980
11-22-2004, 02:00 PM
Hey, Ruko_
I don't know if any one mentioned this but, Ic/CPPS, fall hand in hand, i have been on opiates for three years waiting to get a stimulator, but it doesn't hurt to try other things while waiting?
I don't know if any one mentioned this but, Ic/CPPS, fall hand in hand, i have been on opiates for three years waiting to get a stimulator, but it doesn't hurt to try other things while waiting?
surgicaldisaster
11-22-2004, 04:31 PM
Hey Ruko, have you ever had any abdominal surgery? Appendix, anything like that? Adhesions are ectremely painful...I know cuz that's why I'm on the pain med train also...no choice if I want to get out of bed and not cry all day. The IC could also be a real good thing to check into. If I can think of anything else, I will let ya know. Just know I feel your pain...chronic pelvic pain stinks...ya can't do much without your pelvis. At least if it was my arm I would cut it off (ha ha)! Anyway, please keep us posted k? Take care of yourself...Surgical Disaster :wave: