[tobybabs70]

Hello:

I am 36 years old and newly diagnosed with IC I Have struggled with the severe pain and frequency for about 4 years now but I was consistantly mis-diagnosed. I had a partial hysterectomy in 2004 as one physician diagnosed me with endometreosis during my second hospitalization for severe pain. Turns out after fighting for 9 months to have the hysterectomy (due to my age at the time and lack of children) I learned that I did not have endometreosis. I have had every scan, scope and study known to modern medicine most times repeatedly, my gall bladder removed as well as my apendix. Three years later and frequent hospitalizations for severe pain, I was finally diagnosed in June of this year. I am on Elmiron and have had 2 hydrodistentions and 6 weeks of DMSO treatment. So far, nothing has provided relief from the severe pain I experience daily. It results in lack of sleep, frequent time out of work, severe financial problems including bankruptcy, and an overall feeling of helplessness.

I am struggling day to day just trying to survive and remain somewhat sane. Any information or advice would be greatly, greatly appreciated!
Thank You,
Barbara-Ann

[UroDoc]

consider interstim, made by medtronic. It is for frequency and urgency, but Many IC patients find that it decreases their pain.

[bucky]

barb,
i have the pain to. they think its ic. they want me to get all these tests done. somedays the pain is so bad, i think im going to lose it.
stay strong--i try
does your pain worsen a week or so after your period?
take care,
mary

[tobybabs70]

Hi Mary:

Thanks for the reply. I too feel like I am just trying to hold it together. I had a partial hysterectomy in 2004, one of my many mis-diagnoses, so it makes it difficult to tell my cycle. I definately do have times when it it much worse, generally at the beginning of the month. Most likely when I would have had my period.

Thanks again!
Barbara

[karajo07]

Barbara Ann

Hello, my name is Kara. I have IC and have had it for 2 years. I am 23 nad from Oklahoma. HAving IC is horrible. I have been put on every pain pill and bladder medicine knowon to man. They have told me that I am sever, so alot of medicines will only last for a couple of hours. So I finally got excepted into the Mayo Clinic this Dec. I am hoping that they can help me. They are my last hope. What have you done for your IC?

Kara

[tobybabs70]

Hi Kara:

I have been told I too have a severe case of IC. I have had bladder hydrodistention 2x. I have had 6 weeks of DMSO treatment, and I just had a monthly DMSO "upkeep" that caused a severe flare and I ended up in the hospital for 3 days for pain control. That was my third hospitalization in 3 months. I am currenlty on oxycontin 3x a day and percocet for breakthrough pain. I am also on Urelle for the spasms and Elmiron.

It is so hard to function every day with constant pain. I deal with people all day (I am a Vocational Rehabilitation Counselor) is so hard. I love my job, but I feel like I don't have enough empathy to be helpful. I also miss a lot of days when I just can't stand the pain or I haven't slept in a few days from the pain.

What has Mayo done for you? Hang in there!
Barbara-Ann

[karen10]

So many people I have talked to about IC, or read on the message boards are only trying oral meds. Have you tried any natural supplements? This is a trend I'm seeing as I work with patients with chronic pain. Those who using natural, non-liver destroying meds, usually find a great measure of relief vs those who are just using meds. Also my doctor specializes in IC and she doesn't recommend DSMO treatments as there have been some studies that show they might actually damage the bladder. Instead ask your physician about Heparin instills instead and check online for info on this, there's a study done that shows great results with it. I have been getting those and have had great results, and it took away my pain after two instills (of course I was quickly diagnosed and started treatment immediately, plus I take natural supplements, and watch my diet very closely). I always recommend to do your research about any chronic condition that you have! I'm an educator and I know the value of learning things for yourself!