It's IC Wondering where I go from here!

[mbphotogrl]

Hello everyone I have been reading all the posts on here and I decided to take the plunge and introduce myself and share my story. My name is Tina, I have a loving husband and 2 beautiful children and I have been recently diagnosed with IC. I started suffering in November of 2010. I was back and forth to my family doctor with repeat what I thought UTI's. I went through Bactrim, Cipro, Macrobid and three shots of Rosephin! Finally after 2 cultures came back negative they sent me to a urologist in February 2011. At this point I was in so much pain had stopped working because I just couldn't handle it... Bathroom visits all the time and the pain... I sit most days with a heating pad between my legs and spent the first few months crying my eyes out... When I got my appointment with the urologyst I had several different emotions... was he going to believe me, was this all in my head, what was wrong with me, is he going to fix this. I was depressed at this point. I was an emotional basket case. When I got in to the office with the uro and he asked me what had been going on I immediately lost it... bless his heart... through the tears and really ugly cry i explained everything to him. He immediately said IC. He scheduled me for a bladder biopsy, urethra stretching, and hydro the next week, gave me Elmiron and pain meds. Then he explained IC to me... I was so relieved that he had listened then overwhelmed with what had just been laid upon me. I cried for a few more days after that.

Surgery came and went wasnt bad no relief after surgery had follow up cried again in the office told the uro I wanted my life back. He explained it to me again and apologized for not having the quick fix that I wanted but said we were going to try what we could to get me comfortable. So he gave Elavil to add to the mix and I go next week to start Bladder Instillations. He is also refferring me to a pain management clinic. I thank God that I have an awesome URO that is willing to be pro active and he has a plan and a next step its what keeps me going.

I am following the IC diet and taking my meds. Some days I feel better than others. My URO said my bladder was filled with the tiny cysts so it was gonna take a while to heal I try to be optimistic and I try to keep reassuring myself. My husband is being very supportive and I am so thankful for that but I worry about him to. How much a tole this will take on him and our marriage.

Anyway thanks for letting me share my story and vent its nice to get it out there to people who understand what you are going through and can understand exactly what you are talking about.

Tina

[ICNDonna]

to the IC Network. I'm very glad you found us.

You have several things going in your favor: You have a urologist who understands and will help, a husband who is supportive --- and you've already started the diet. Hopefully you'll feel better soon.

One thing I have learned is that my husband does understand --- and even though I have a tendency to push people away when I don't feel good, I have found that if I share with him, it makes it much easier. I honestly think we are closer than we would be if neither of us had health problems.

Sending warm welcoming hugs,
Donna

[cmclien]

Hi Tina! Welcome to the board!

It sounds at least like you had a speedy diagnosis as some can go from uro to uro not getting one. I haven't had instillations yet (I am trying elmiron first and am not in pain like you) but my UG says they are very effective for most people. He does a 6 week course of instills. He says some patients don't have to come back for more for 6 months, some 1 year and he has some where it has been two years.

Its gotta make me wonder if all the antibiotics we're pumped with cause an issue with the bladder lining or maybe a combination of the initial bacteria weakening the bladder lining then the antibitoics adding insult. This is pure conjecture on my part but it seems like there are so many with your same story.

Thats great news that he actually referred you to a pain management clinic as alot of them won't.

[Nonna]

Tina,
You mentioned urethral stretching as something your uro was going to do to you. From my understanding, that procedure is considered extremely outdated and not recommended AT ALL by the main urological associations. Even hydrodistention isn't really considered a firstline approach. Make sure you ask your urologist about why the urethral stretching? Nancy

[KatieB]

Tina! I just wanted you to know that you could be telling my story. Except the part about the great uro. I've had to go from doctor to doctor to get my dx and I *think* I finally found a good one. But I cried a lot of tears in those uros offices. I'm just hoping that whatever we do from here forward, works in some positive way. I've had enough of things not working. So good luck to you, to me and to all of us!!

[amy09]

Hi Tina!
Your story sounds similar to mine. In the middle of January I thought I was coming down with a usual UTI so was put on Bactrim, which did nothing. Then was put on Keflex, IV Vancomycin and Rocefin, and finally Ceftin. Still had symptoms after all that. I'm still confused as to what was actually going on because I was testing positive for bacteria and nitrites in my urine during that time. But I've had clean cultures since and still have symptoms so my guess is that the infection triggered IC. My urologist said I just had residual irritation from the bladder infection and wouldn't diagnose IC until I had symptoms longer. I've pretty much diagnosed myself though because I don't think residual irritation would last over a month. Anyway, hope you find some relief soon!

[cmclien]

My urologist said I just had residual irritation from the bladder infection and wouldn't diagnose IC until I had symptoms longer. I've pretty much diagnosed myself though because I don't think residual irritation would last over a month. Anyway, hope you find some relief soon!

Hi, just wanted to say that the new criteria is 6 weeks so hopefully your uro is aware of the new diagnostic criteria and you get some treatment soon.

[cmclien]

Tina,
You mentioned urethral stretching as something your uro was going to do to you. From my understanding, that procedure is considered extremely outdated and not recommended AT ALL by the main urological associations. Even hydrodistention isn't really considered a firstline approach. Make sure you ask your urologist about why the urethral stretching? Nancy

I wanted to agree with Nonna that hydrodistention is no longer considered a first line approach. They recommend meds like elmiron, elavil, atarax and probably with someone in your pain, instillations for 6 weeks. If that doesn't work then the hydro should be considered. I have a link below that outlines treatment protocol. Page 19 of the pdf has a good flowchart for both diagnosing and treatment.
I'm glad you like your uro so much but you might at least want to ask him about starting out with some of these approaches and see what his thoughts are.

[amy09]

Hi, just wanted to say that the new criteria is 6 weeks so hopefully your uro is aware of the new diagnostic criteria and you get some treatment soon.

Hi! I think she is, or maybe not, but either way I've heard I'm supposed to be infection free for 6 weeks so that's probably why she didn't want to jump to the IC diagnosis. I'm almost there though, since the first urine test I had that didn't show any bacteria was exactly a month ago. Before that I had one done on Jan. 24 that still showed traces. She put me on Ditropan and I've been on that for 3 weeks now and it seems to be helping. She wanted me to try that for 2 months and then if I was still having symptoms she mentioned looking into other treatments like Elmiron. I'm flying home to visit my family again next month so I'll do a follow-up then and see what she wants to do. I do plan on showing her the new criteria and stuff that just came out, if she hasn't seen it yet.