Help! I don't know who to speak to next

[fstallan]

My story is a long one so I will try and make it brief. I had a lot of problems as a teenager with my bladder. I remember having a test in London England and left feeling totally humiliated only to be told I had nothing wrong.(age 16) I had endometriosis and have had a vaginal hysterctomy at age 29. I have had reaccuring UTI's at least 3-4 every year since I was 13-14. I was diagnosed with detrouser instability (muscle in bladder not working properly) 5 years ago and have been taking urispas everyday since. For the past 6 months I have not been able to get rid of the symptoms of a uti despite being told that my culture is clear. My pelvic region aches, it hurts to have sex. I keep swelling up, sometimes I get the urge to pee all day long and it hurts to hold it I have to go right away and it burns and aches as I go. Other days I don't seem to be able to pee at all and it just seems to cause my bladder to ache and I get a burning pain in my left flank. although my doc gave me an ultrasound of my pelvis so I feel sure I don't have a Kidney stone. I have had this problem on and off for years. This time I feel like I am going mad ! My doc has given me 5 couse's on antibiotics since December. In the past 6 weeks he has sent 3 cultures away and other than the first one that tested positive for bacteria (strep) and blood the others have all been clean. I find it painful to walk somedays as my bladder feels bruised. I have a very busy job my festival is in 4 weeks and I can;t get an appointment with a urologist until July. After reading some of your experiences I'm not sure i have IC as my pain really comes and goes and even when it's bad I do function. Just miserabley. I have also been told I have Irritable bowl! any offers of advice would be gratefully recieved. Thanks

[iwant2help2]

you need a diagnosis from a Urologist if you have IC or other urologic condition and I believe a Gastro-Enterologist would diagnose Irritable Bowel - Talk to your MD - quick :kiss:

[LauraLynn]

I feel your pain!! I had the same symptoms for a year until I finally saw a uroligist. I Had my surgery on the 10th and go tomorrow for the post op appt. I hope you get in soon. Did you tell them how many problems you were having. Can you see another uroligist in town?? I hope you get some answers soon so you can start to feel better. My pain is also annoying but I am still able to function at work. Yes I know the pain when you pee and with sex. This site has helped me so much just knowing I wasn't nuts and that I wasn't alone. Keep reading as much as you can about it. Educate yourself before you go to your appt. so you know what type of questions to ask. Best of luck!!! Hang in there you are not alone!!!!!!!:kiss:

[Dixiefireball]

first off i would like to welcome you to the icn. I too have had many problems but mine started at birth.
i know how hard it is to have to put our lifes on hold but you really need to get to a doctor that sp. in IC to see if this is what you have if you do have IC you can start get treated for it and get your life back.
i just had three hunner removed from my bladder yesterday and my bladder already feels some better plus my doctor removed scar tissue from my bladder from many many uti. i do feel like the uti queen most of the time i normally get one onces a mth.:rolleyes:
I hope everything goes well for you and you get some answer soon
sending you hugs and many prayers
please keep us updated
Rhonda

remember we do care.

[kelly McC]

Hi and welcome,
Just a thought could you call the urologist office back and see if they have a cancelation list or if they can get you in on a emergency visit. Best wishes and hope you get some answers soon.
Kelly

[ICNDonna]

:welcome: to the IC Network.

I know it seems like forever until your urologist appointment. In the meantime, are you following an IC diet? You'll find diet information and other self help tips at http://www.ic-network.com/handbook/

Sending warm healing thoughts,

Donna

[VickiB]

Your story sounds somewhat similar to mine. Frequent UTI's since my teens. Eventually the cultures kept coming back clean. Still there was that pain when walking, sitting peeing,..even not peeing! And sex? Ouch!! And the pain & aches would come and go,..I never knew when it would strike next. I could always funtion, but boy, some days I was absolutely miserable! I was diagnosed with IC three months ago, but looking back I know I've had it for many years. The IC diet has really helped me. I believe the "coming & going" of the pain cycles was related to the foods that I was eating. My suggestion would be to look for a doctor who treats IC patients. And in the meanwhile, check out the IC diet and eliminate problem foods to see if this helps you at all.

Let us know how you're doing!

Vicki

[felineperson3]

A warm :welcome: to you,

I hope you can find some answers soon. The others that have already posted have given you excellent advice. I have nothing really to add other than prayers and best wishes for you as you try to obtain a diagnosis. A true diagnosis is winning half the battle since you have to know what the problem is before you can begin to solve for the answer.

Hugs & blessings to you--:cat:

[fstallan]

Thank you all for your support. I guess I feel like such a pest to my doctor. I am on first name terms with all the staff that's how much I feel I keep going to my doc's office! I have been raised to respect the Doctors and not to argue so for me to kinda sit and argue is hard. I live near Toronto Ontario do any of you know of a good urologist in my area. I know the urologist I have been referd to is old and should have retired so I don't want to go to him. I went there 6 years ago for the same symptoms and he told me it was because I was overweight! Grrr. I saw a female urologist who diagnosed my bladder muscle problem but I wonder now if that was a corrrect diagnosis? Getting the courage to stand up and insist I get help is my problem. I will call my doc's office today and ask to see him. Thanks again to you all.:thumbsup:

[vm]

Maybe you could tell your doctor that you have read some info on IC and that your symptoms seem really similar. That you know other conditions can mimic IC, but you wondered if he could help you rule that out. He may want you to wait until you see the uro - and I know that wait seems forever.... :(

If you have a bad feeling about the uro you've been referred to I would really shop around for someone else. NOT all older urologists are out of touch with IC, but many are.... I'd hate to see you wait all that time and then get the run around or be told it is in relation to your weight. That is crazy - I can't believe he said that........

Good luck, OK? :kissing:

[blueblondie1121]

fstallan, i to kept having problems for years with uti,pain. i am not a doc but there is noy dought that you have ic. i took my uro a magazine story on ic ,told him i think that is what i had. since there is not a test for it ,he put me in the hosp to do a uro. sure enough it was that. you got to take your health into to your own hands. good luck. keep us posted. blueblondie1121:butterfly :butterfly

[fstallan]

I finally plucked yp the courage to make another appoinment with my family Doc. I have the appoinment on Tuesday. I am going speak to him about which uro to see. If I have to wait along time then I want to atleast make sure the wait was worth it. I've had a bad day with my pain today. My bladder and pelvic region was sore and bruised feeling all day. I honestly think I know where every public washroom is in my town! I know alot of you talk about bladder pain and the sensations of a uti which I have but it seems that when I am suffering what I am now wondering is a "flare up" I seem to get a lot of sore throat and real lethargic feeling. Is this part of the symptoms or just becasue I am in pain all day? I am under a great deal of stress in my job at present it is very fast paced and busy. I had my last uti in early April and haven't got rid of the pain yet. Have any of you tried yoga or mediation or any suggestions on how to de stress myself? Thanks again for your support. Have a great weekend!:)