Just diagnosed

[Katie14]

Hello again. I just officially got the IC diagnosis today and treatment recommendations. He suggested Elmiron and Elavil since I'm having trouble with the frequent voiding at night. He also talked about the IC diet again and gave the option of the DMSO instillations. So far I've said yes to the first two and maybe on the DMSO. I'm concerned about irritation from frequent catheterizations when that is a source of discomfort for me already. He said it would help that area too. Any thoughts about this?

I had already been reading up on IC for at least a month and following the diet as best I could. The diagnosis was expected. My sister was actually given the diagnosis a little over 5 years ago. She had been having many of the same symptoms. For her it was a diagnosis by exclusion. They didn't really find another cause for her symptoms. She was given Macrodantin for 6 months, a once a day dose. She hasn't had symptoms again until recently. She had a cystoscopy and they didn't see signs of IC. Now she's confused as to whether she ever had it but isn't it possible she's just been in remission?

When I left the doctor's office in a bit of denial I suppose I went to Starbucks and had a decaf non fat latte that I haven't had for 6 weeks. My final fling I guess. As of now my stomach feels more unhappy than my bladder!

I'm a little worried about side effects of the drugs because I'm very sensitive to medications. Fortunately I'm also seeing a gastroenterologist this afternoon and I can get suggestions from him.

Another question I have is I really feel like exercise aggrevates my symptoms. Is this true for others? Walking on level ground is OK but when I try more hills I have more bladder/pelvic pain after. Does this happen for others?

Any advice or comments would be appreciated. Thanks so much!

[bluebyrd88]

Hi Katie,
I went to Dr. today also, thought he was going to do a cystoscopy in the office, but he told me he has decided he needs to do mine in the Hospital while I am out. It will be Monday.

I'm told that the only real way to be sure this is IC is to have a bios. to rule out all other causes.

Exercise makes me feel worse, however I have read where many people feel it helps. I guess it's what work for you.
There is a lot of useful information on these boards.
I too also have drug sensitiviy, so I am very nervous about taking any of the drugs.

I think for now there are a lot more questions than answers for most of us.
I have found diet does help calm some of the pain. praying you find what works for you soon.

Good luck
Mary Jane

[Katie14]

Mary Jane, Thanks for replying and good luck on Monday. I'm sure you're apprehensive about the test but it will be good to get answers. I had a cystoscopy in the office before a surgery I had and everything looked fine. It was when they did a cystoscopy that went along with my surgery and my bladder was distended that they saw findings consistent with IC. I also had the PST later and filled out a symptom questionaire.

I started the Elmiron and Elavil last night. I must admit I felt pretty tired today and wanted to nap. I hope I don't have trouble working tomorrow. I'm going to try taking the Elavil earlier tonight like some have suggested. I worry a little about taking these medications because I feel so much better than I did. At my worst I was really miserable and depressed and I have gotten better, perhaps from following the IC diet but also because I had a UTI on top of it all that has resolved. My doctor said IC isn't cured by diet alone which is why I'm taking the medications & of course because of the cystoscopy findings. Nights are hardest for me because of the disrupted sleep and I'm really hoping the meds will help that.

Let us know how it goes on Monday. It helps to not feel alone in this. Take care,
Katie

[bluebyrd88]

Hi,
Well things have changed, I went for all my pre op test and they put a hold on the whole deal, did not want to put me to sleep until I have a full caradic work up stress test echo the works, keep me in your prayer, they get this all worked out before they kill me !!!
Thanks for your support.
Mary Jane

[Katie14]

Sorry to hear they had to postpone your test. Have you had the tests you mentioned before? If you have any questions about the stress echo I've had a few and can tell you what the procedure is, just let me know. You sound frustrated. Let us know how things go.

[bluebyrd88]

Hi ,
I have not had the echo just regular stress test. Any info would help. Dr. called me today, to tell me I really HAD to get all this done, and he would call my family Dr. and they would work it all out. And we are trying to decide which one of the MEDICARE new programs we should sign up for so more stress GEE maybe I don't need a Stress test life seems to be doing a real good job of it at the moment..lol Thanks for any feed back. Mary Jane

[Katie14]

There are web sites that explain the procedure better than I can so I would just type echo stress test into google. It's much like the regular stress test you've already had but with pictures included which they do with an echocardiogram. They visualize the the stuctures and function of the heart before exercise and again after exercise. You'll be monitored with the EKG and frequent blood pressures. My doctor arranged an appointment with me right after the test to go over the results which I appreciated.

Sorry you're stressed! Hopefully you can get this done soon so you can get your other tests done and get answers. Take care!

[bluebyrd88]

Thanks , Hope you are feeling well today.