Please help! I am so depressed...

[julieo]

Hey guys,
I am so depressed, I just don't know what to do anymore. :help:My friends are sick of listening to me and I feel like I have no support. More than anything, I am so frustrated right now about my diagnosis. I really need your opinion on this.
Here is a quick history:
1999 HX UTI, dx with bladder spasms
during the next few years had to take Detrol off and on because of urgency at night
Nov 2007- That is when my life changed for the worse. Horrible urethra pain, felt like a throbbing sensation, urgency and frequency all of the time. Would go to the restroom at night several times, even after minutes of using the bathroom.
Dec 2007, saw a urologist, he did a scope and said the urethra looked inflammed. This was done in his office and he put me on antibiotics. Still was in pain and was actually taking Vicodin and Valium. Lasted for a while.
Now, I don't know if it was a coincidence but I did start eating healthier and no cokes, pain did get better.
Jan 2008 saw a urogynecologist who told me I had pelvic floor muscle spasms. He wanted to do instills and physical therapy. I did the physical therapy but didn't do the instills because at that point, I was actually feeling ok. And, he put me on Vesicare every day and Urelle as needed.
April 2008 came on very suddenly, pain in my urethra. It feels like it is right inside the urethra and the best way for me to describe the pain is it feels like a "throbbing" pain. It is very uncomfortable. The week before I had been very stressed out and by the way, had been eating whatever I wanted to for about a month. Went to family practice doctor, Urine neg for infection. he gave me valium. Pain lasted three days. I was able to still function but I was very uncomfortable.
Now, I just went back to my doctor (the urogynecologist) this past Wednesday. I was crying in his office because I don't feel like I know exactly what I have. He said by the way it sounds, it is probably IC. His plan is this: Vesicare 10mg every day, Urelle prn, Valium vaginal supp only in severe pain, plus he wants me to start Elmiron 100mg 2 tabs twice per day!!
I guess my concern is, noone has really done any testing on me to make sure this is IC. He is just going by the fact when he did a pelvic exam he said he could feel the muscle "spasm" as well as my description of the pain.
Is this normal just to treat someone for IC without doing some kind of testing? Also, I am very nervous about this Elmiron. Have people had success with it? I also feel like 2 tabs twice per day is alot.
With IC, can you really just have the throbbing sensation in the urethra and that be IC? I don't have pain anywhere else. I do feel urgency at times but I am not getting up 20 times a night to go.
Please help me. I just don't know what I should do. Should I start the Elmiron? How often can flares happen? Will it help decrease the flares? Does it help with urethra pain? Are there any of you out there that just have the urethra throbbing pain and you have IC? :confused:
Sorry for the long thread.

[ABliske]

Sorry you are going through this. It took me about a year and a half I think to get diagnosed. As with you, a lot of Drs. thought it was a UTI. I had terrible urethral pain and vaginal pain! I didn't see a urologist until I had been seen by 8 or so OBs and one finally referred me.
It can be treated without a concrete diagnosis. I was diagnosed with a hydrodistention under anesthesia because my Dr. wanted to see how severe my case was. It turned out my bladder was at 700cc (1200 in normal). I started Elmiron but it did not help. It's probably worth it to try. I just wasn't one of the lucky ones. It make my hair fall out a little. I also had a hard time with it because you are not supposed to eat right before or after taking it.
The hydro did more harm than good. I went for a second one with capscain to kill some nerves, but that didn't work either.
I think Drs. are still trying to figure out how to handle this condition. I hope you are feeling better soon!

[SharonA]

Julie...I am so sorry that you are suffering. (((Hugs)))

I think it might be a good idea to have a talk with your doctor (the urogynecologist) and discuss the tests that can be done to diagnosis IC.

They are:

Cystoscopy/Hydrodistention under Anesthesia done in a hospital either as a walk in patient or overnight stay. (This is how I was diagnosed - walk in.)

Potassium Sensitivity Test (PST) done by the doctor in office. (Do a search online so you understand what this is when you speak with the doctor.)

The Pelvic Pain and Urinary/Frequency (PUF) Patient Symptom Scale designed by Dr. C. Lowell Parsons which can be done online (do a search on PUF to find the actual test) and then taken to your doctor as a discussion item.

Some doctors use the diagnosis of exclusion method where they run tests for things that can cause the same symptoms one by one until the only thing that is left is the diagnosis of IC.

I do think that you should go back and stick with the IC Diet. It can help calm your symptoms down.

I have never taken Elmiron, but there are many here who have had good results with Elmiron. Do a search online to see what it is used for and what side effects it can cause. It really is your decision if you want to try it, but I think it would be good to talk with the doctor about why he wants you to take it.

IC presents itself in many different ways. For me, it was extreme bladder pain, for others it is urgency/frequency, for others it is urethra pain. There are many more symptoms than that. It depends on the person.

I hope you are able to get to the bottom of what is causing your symptoms. Again, I think it is a good idea for you to consult with the doctor about your concerns.

:) :) :)