View Full Version : Miserable AGAIN
04-02-2004, 01:30 PM
OK..so today was SUPPOSE to be my 2nd bladder instil...BUT when I woke up I was in agony (more so than norm) and also bleeding when I urinate..Ive never had that before! So I went to my appt and cried when I saw them saying IM IN SOO MUCH PAIN! I could and still can hardly walk!
They checked my urine and YES I have a bladder infection now. SO they couldnt do the instil...and I have to have 2 rather than 1 next weel. BUT meanwhile, Im in agony. They gave me antibiotic and peridien..BUT the pain is sever and the meds they give, Trideol , do not work and I told them and they said SEE YOUR MD FOR STRONGER! Now, LIKE 1st of all...Im IN PAIN so who wants to run from dr to dr AND I have to pay a co pay every time AND I have 2 year old I have to bring with me..and Im so upset cause all I want is some relief. The pressure and cramping and pain is horrid. So, Im not a happy girl right now
Im waiting to hear from my MD and hope to get in tday even though I DONT WANNA GO TO ANOTHER DR but I need some relief here.
Sorry....needed to vent and let you know the burning I wrote about this week was obviously this bladder infection.
Thanks for listening everyone..
04-02-2004, 01:53 PM
i sent you a pm.
i hope the information i put in there helps you.
if your doctor doesnt call something in please have someone to watch your baby and go to the er for pain control make sure someone drives you tell them you have ic and if you have picture of your bladder take that with you also i have learned the more i talk to the doctor and they see that i know what i'm taking about the more they will try to help me.
sending you hugs and prayers
I hope my pm helps you.:pray:
i'm praying for you!!!!!:pray: :pray: :pray:
04-02-2004, 01:57 PM
I am sorry ! Hope your feeling better soon and running around to doctors is no fun ! Especially when you dont feel good ! Hope your Md can help for your relief . I will :pray: for you !
04-02-2004, 01:58 PM
Im sorry that you are in so much pain!!! I hate it when they try and pass you off to someone else like that!!:cussing:
I know how hard it is to be in so much pain while taking care of your kids too!!
I also have a trying 2 y.o.,8y.o.and 9.5y.o ,s.d.
and it sucks when you are in sooooo much damn pain!!!!!
I hope the dr has called you back,if not i would call a few more times,bug 'em Your hospital cant be as bad as the one I live near
:yikes: You just might have to go to the ER if he didnt get back to you yet.
Can someone babysit for you?
04-02-2004, 01:58 PM
:kiss: Your very kind for your pm and response here. Thanks. and Thank God :pray: for this site cause I feel like Im losing my mind. All Ive done is cry today. I pm'd you back. I still feel like there is no help right now. I know what your saying but seems whenever I speak to someone (drs) O get NO WJERE..I dont get it???? Like Im crazy! I mean Im in agony. UNBELIEVABLE. Even the peridien doesnt work...Im still burning.
Thanks for your email and post...really I mean that! :thumbsup:
04-02-2004, 06:20 PM
One thing you can do that might help is to be sure to drink lots of water. I know it can make you urinate more, but it will dilute your urine so it won't burn as much. Has the pyridium colored your urine yet? I always know when it will start helping from the bright orange urine. Hopefully with the combination of pyridium and antibiotic, you will feel better very soon.
Sending warm healing thoughts,
Oh my, you poor thing! :( I hope you have found some relief!!! Being in pain seems to only be magnified when we feel alone and like we won't get the pain relief we need. Please update us when you get a chance.
04-03-2004, 05:36 AM
You never have to appologize for venting...we all need to some times. Infections with IC are :evilsmile . I hope you feel a lot better soon...the one thing about a flare from infection is atleast the infection is usually easy to get rid of. Sorry you had to go through that...I hate having to go to the doc in so much pain I can hardly walk ((((((((((((((((((big hug))))))))))))))):grouphug: :grouphug:
Try to get a doctor to give you klonopin or valium. It will immediately stop the worst of the pain unlike a pain killer.
You may need to take an antibiotic after your cathertizations because that can lead to an infection, the last thing we need.
I had 3 infections in a row from the swimming pool at my healthclub.
04-06-2004, 12:00 PM
Hey guys, regarding the 1st post I placed last Friday about the fact I was bleeding and burning and they put me on antibiotics...I went today for that 2nd instil and I NEVER HAD AN INFECTION. They sent the urine for a culture and it was negative...so I was bleeding from the IC apparantly!! Ive never bled before like that...so I dont understand whats goin on. This is all very discourraging. I just wanted to keep u upsted and thank you for all your responses!!!! Its great to have you all here, know one understands the trouble nor the pain this is. Physically and Mentally.
04-20-2004, 12:00 AM
My Urologist described it this way. The flare happens and the bladder swells, the tissue rips where the IC is scarred (in me) and this shedding causes the blood to appear in the urine. I have never had a single UTI in my entire life, but they always check for one in case... I get blood amounts of between .38 usually but have been .56 w/the blood in the urine.
The blood is like a sign to let you know you are in a real flare. But sometimes it's there just because??The old doc I had initially tried to "pass me off" to the Urologist for pain meds, and she picked up on this right away and even said so..
Some MD's have been in trouble for prescribing pain meds..you can check about this. Or, maybe yours is just afraid, it's not like they get taught a lot about pain management in med school.
If they don't want to give you pain meds..fire them! Really..I did and I'm much better off w/out him. I use the Duragesic patch 50..This is given to people who are dying of cancer, meaning IC HURTS!! So, we should never suffer. never ever..without help. see below...I think there should be some guide lines about paina nd IC that MD's are forced to follow, no one should suffer. I'm so very sorry you are. Please take care of you.
08-11-2005, 07:03 PM
I am new to this site and I have been having pelvic pain now for thirteen years and after three months I finally have an appointment with a urologist on monday. I have severe pelvic pain that affects my lower back really bad and it affects my hips and legs, and my stomach and it makes me really nauseated, it also feels like my insides are gonna fall out and in the morning i wake up with severe cramping when my bladder is full until i relieve it, and then its not to bad, it was good for about two years and then it came back again and every time I go to the er and get it checked out there is no bacteria in my urine and the blood level is +3. I am in pain every day, and antibiotics don't work any more the only one that helps in Norfloxacin and that only works for so long and than it doesn't do anything. Is this ic?
Joanne dorcas :loco:
08-12-2005, 04:22 AM
Sounds like it could definitly be IC. The symptoms you describe are mine almost to a T, plus my frequency is at about 25-30 times per day and 3-6 times per night. The pain starts in my abdomen and when it is at its most severe, it radiates to my lower back, down my legs, and even to my scrotum and perineal area. Hope you get some relief soon.
08-20-2005, 12:48 PM
I had a flare from hell this March and only started feeling better two days ago. I had severe severe pelvic pain all over my pelvic area and the pain would also fluctuate to the left side near my groin area. I had severe burning in my bladder, left side and vaginal area for over five months. I was also told that I had an infection in the er one night, got started on the antibiotics and also had my urine cultured and two days later the results were negative. From my experience with doctors and having my urine specimen checked with a dip stick is as following. When they see blood in the urine they automatically assume you have an infection. Moreover, when we have a flare our bladder is very inflamed which causes white blood cells to be elevated in the urine so doctors will associate the inflammation due to an infection. In patients with IC we have traces of blood in our urine as others have mentioned because the bladder is so inflamed and irritated which causes the lining to bleed and shed through the urine. So having both inflammation and blood show up in the urine can lead to a false diagnosis os a UTI infection. So Doctors do make mistakes. Only with a broth culture can they really know if you have an infection. I can deeply sympathize with you I went through hell trying to survive this exruciating and torturous flare. My urologist did not know what to do with me. He prescribed everything he could to help me such as pyridium, prednisone, naproxen, neurontin, dilaudid, pantoloc, ibuprofene and many others. Sadly enough all this medication only took the edge off the pain. I suffered enormously and had to endure a tremendous amount of pain and burning. I hardly ate or slept and felt like my bladder was going to rupture. It was a nightmare. I thought I would never get better. I was bed ridden for 5 months, and only did I start feeling better 3 days ago. I'm still taking pain meds but they don't help much after a while. You become used to them and they no longer have an effect on you. I really can relate to what your going through. This illness destroys you psychologically, emotionally, and phisically. The mental anguish, anxiety, fear, depression is just as bad as the physical crippling and debilitation. I thought I was going to die and many times wish I would. I fanally started feeling better 3 days ago, but my life is pretty much consumed by this illness. I had to quit my job and spend most of my days at home. This disease isolates you and takes everything away from you, your whole life. I don't want to come across as bein negative and pessimistic but if you have an exerience like that you are forever traumatized. I know the type of pain you're in and can only tell you to keep hanging in there. Keep fighting to overcome the horrible flare that you're in. It's hell and we never know how long a flare can last. The fear of not knowing if you'll ever get better can drive you insane. It takes every bit of strength, energy, and will power to survive this disease. You need a lot of mental strength and determination to get through this. Don't give up it will subside eventually. It's instinctual and human nature to try and survive the most difficult and painful conditions we are confronted with. I'll be praying for you. If the pyridium didn't help try putting an ice pack. That's the only thing that helped me somewhat and find a pain clinic to give you pain medication. If it wasn't for the pain meds I got I don't think I would have made it, and I'm a very strong person. My prayers will be with you and I pray that a cure will be found soon .
Warmest of thoughts and prayers
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