frustrated

[carlafay]

Hello! I have had ic for over 2 years. The only thing that has helped me is a hydro. Take elmiron, preleif & try to watch my diet. I switched doctors last year. I had a hydro in may 2004 with the new doc. He said looks like I have ic, but wasn't convinced because my bladder could hold a lot of fluid. thought maybe I had pfd also. So I went to a therapist for that. I called last month and told him I'm starting to go in a flare( usually have a hydro every 6 months). He put me back on phenazopyridine and told me to wait as long as I can for another hydro. Called the doc last week because I was really starting to hurt,swelling, chronic fatigue and didn't want to be in a full fledged flare. He talked about doing heprin right into my bladder. I told him no way, because when the previous doc did It hurt so bad even with numbing(also found out my uretha is very narrow). Now he put me on antibotics, thinks I have urethaitis. I was checked for that in the beginning and both me and my husband were on antibotics. I was so upset and just cried. I feel like I am starting from square 1 again!! When I first statrted out my bladder could not hold much fluid. So, does anyone know if hydros can help to retain more fluid?? Also if there uretha's are as sensitive as mine? I'm sorry I rambled on, I just needed someone to talk to that has the same thing. I could really use some input and Thank You for listening!! :headbang: :help:

[Sarojini]

Wow... you sure are going through a lot right now! :grouphug:

I'm sorry your new doc is not as understanding as the first one. That's difficult. :(

I think hydros, as well as Elmiron, can help you retain more fluid in your bladder. However, that does NOT mean you do not have IC -- there are IC patients that can hold a lot of fluid in their bladders!! My bladder held 600 cc under anesthesia, which is low, but not as bad as many people on here. There are others here who have IC and can actually hold more than that under anesthesia!

Have you had a culture done to see if you really do have this infection your doctor says you do? If not, I would ask him to do one. A LOT of IC patients have very sensitive urethras, and find any type of catheterization quite painful... this is not unusual at all.

I would discuss your concerns with the doctor. Try reading our Patient Handbook at http://www.ic-network.com/handbook... this is full of information about treatments, self-help, and other things which may be of use to you. You can even print out sections of it to bring to your doctor to make discussion easier. If your doctor is not willing to discuss other options with you, then maybe it's time to make yet another switch. Many of us have gone to several different urologists before finding the right one for us so don't be afraid to switch if you feel you're not getting the kind of care you want.

:grouphug:

[ICNDonna]

If hydrodistention has helped in the past, it might help again. And if your current doctor is not willing to consider this option, it may be time for that second opinion.

Just my thoughts,
Donna

[bunnykinb]

My urethra is very sensitive. I nurse now uses a male catheter rather than the steel female version. Under anesthesia, my bladder only holds 300 cc, so I am a major tinkle buddy. I had my hydrodistention in June 2004 and it did not do a thing for me. My uro wants to do another one but awake in his office. I am having major doubts on that one. He said it is not good to have anesthesia so much and because of the risks. There is always an epidural, but that doesn't feel very good when the needle goes in. I understand how you feel. I have been going to the urologist since April 2004 and I am still having a lot of pelvic pain. My uro is nice, but doesn't seem to be sympathetic to all my pain. I am requesting for a 2nd opinion.

Good luck,
bunnykinb

[carlafay]

Thank You very much for your reply & support!! I mostly have all the symptoms that come with ic and know how my body feels. Most of these doc's don't have it and make me feel like it's in my head. It really helps to know that other people have the same or similiar symptoms. I will definetly be calling my doctor today, and if he won't(do the hyro) I will change. I don't want to be in pain so bad I can't stand it.(it really sucks when pain meds can hardly cut it) Thanks again and my thoughts & prayers are with you all. Carla

[Rosalie]

I was positive that I had IC even though I didn't have much of a problem with frequency or urgency. Still I followed the diet and other advice given on this site and noticed an inprovement. After my cysto/hydro I was diagnosed with Urethritis not IC.

I am currently using Endep, with remarkable results. I still frequent these boards because these two illnesses are so similar. I'm wondering if you may be in the same situation?
Rosalie