Newly diagnosed sort of

[tate-sparks]

Hello all,
I tried my first post under flares, and then I saw the newly dx thread. I am not actually newly dx'd. I have known about my ic for over a year. My sister was actually dx'd before me, and I am a nurse. Both of these factors helped me to recognize ic. Of course, intially I thougth I was having uti's or honeymoon bladder etc. Fortunately, it did not take me years to receive a dx. Looking back however, I can see a pattern of ic in my life for many years with a slow growing impact.

I have not found any tx's helpful, and did not consent to many of the standard tx's because I felt research did not support them. My thoughts were I am at maximum pain coping level and I am not willing to take a risk for 35% efficacy. But, I did take the big plunge and have the interstim device installed Aug. 2nd. Intially, my response was positive with an appx 50% reduction in frequency. This response lasted 2-3 weeks. Then I noticed a marked increase in frequency along with spasms and pain. I am trapped in a pain cycle.

My faith has kept me from suicide literally. I find that God's grace keeps coming even though the pain is not abating. THe change in lifestyle has been challenging. I have not worked in over a year; primarily due to the effect of sleep deprivation. I had hoped the interstim would restore my sleep; thereby restoring some aspects of my health and life. I will be having my device reprogrammed at the end of this month and am hopeful for a better response. Would love feed back.
Robin

[Sarojini]

Well, I guess I'm a bit surprised you went directly for Interstim without trying other, less invasive options... but everyone's IC experience is different and their treatment choices are left up to them. I hope it works out for you, and I hope your reprogramming goes well and you go back to feeling great in no time :)

And by the way, :welcome: to the ICN!!!! :)

[ICNDonna]

:welcome: to the IC Network.

I also am surprised that the interstim was your first choice --- most ICers consider it a "last resort" option.

I encourage you to read the information in the Patient Handbook at http://www.ic-network.com/handbook You'll find information there about treatments, including the IC diet, which I encourage you to be on if you aren't already.

My IC was diagnosed in 1975. I know it can take time to find the most effective treatment options in each individual case, and I have tried some that didn't help, but I think at least trying some of the medications is worthwhile. You might think of trying some of the antispasmodics --- I take hyoscyamine if I'm flaring --- and Elmiron has significantly improved many ICers.

Sending warm healing thoughts,
Donna

[tate-sparks]

Hello all,
Perhas I misrepresented myself, I have tried other treatments for IC for over a year. I have not tried some of the more invasive and painful treatments, ie-hydrodistension and instillations. I have tried physical therapy, elmiron, diet management, and many other medications.

I did see interstim as a last resort, as did my physician. I hope this has clarified my statement somewhat. I personally considered the interstim a big plunge because I had not previously consented to invasive procedures and interstim is the most invasive.
Thanks for your replies.
Robin

[SharonA]

Robin...thanks for the clarification. :hi: and :welcome: Hope the reprogramming helps. :)

[Babs RN]

Welcome!
Just wanted to say hi and that there are alot of us nurse types on the boards. Again, welcome.


Hugs,
Barb

[vm]

:welcome: I sure hope the re-programming is helpful. I am sorry none of the oral meds helped you. :(

[tigger_gal]

whew glad I read on b4 I stuck my foot in my mouth.. I am a fellow interstimer.. been bionic for over a year :lmao: .... I have had to have some reprograming.. weight loss, highier freguency, reprogramed for shopping at best buy :lmao: ... My uro put me on a cycling and have the magnets shut off. I run for 30 sce and off for 10.. I haven't been reprogramed in about a year... but think I need to be.. Will have them do that in Oct, on my appt...
My pain has increased over the year with IC and I don't believe it has anything to do with the interstim. I know my pain is stress related and depression.. I have always had terrible pain.... and was told right up fron that it wasn't used for pain... Hopefully when you get reprogrammed your frewuency will go down.... Always remeber folks.. interstim is a last resort.. try everything first b4 a surgery.... (I do love mine tho)
I take urised for spasms, and they really do help, alos antidepresants help pain... I will be starting one tomorrow...
Brat

[Katrina]

:hi: and :welcome: to the ICN!
I am thrilled you found us. So sorry you have IC. Let me know if there is anything I can do for you. :grouphug:
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you. Some of theese things can help for frequency too.

[tate-sparks]

Wow, what a bevy of replies!! I am so excited to communticate with fellow ic'ers. Thanks for the condolonces. I don't get many. I truly feel ic is a silent and invisible torture. Thank God I have a supportive husband, but friends and extended family continue to have the same level of expectation from me. It is hard to maintain relationships. I have felt very isolated over the last 1.5 years. Hopefully, this venue will help. Thanks for the comment about anti-depressants. They are on my agenda. I tried one and had a negative side effect issue, therefore, I have been waiting for the dust to settle in other areas of my life before trying again.

I take quite a few meds now and adding another to the plate can be complicated. Thanks for the encouragement all around.
Robin