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In my 9 years of having IC I have never gone to the ER for my pain before...until last night. I was positive I had a kidney stone. As the pain got worse and worse I finally had to go in to the ER. Turns out there was no stone and the ER doc (super nice and super IC smart) is convinced it is a nasty flare up. My pain is severe in one specific spot off to the left of my bladder. He could not even push on my bladder without me crying out. He thinks it might be a Hunner's ulcer that has developed and is causing radiating pain going up my left side. I see the uro on Thursday morning. I have to admit I was terrified when he said the CT was normal and no stones because I didn't know if he was gonna be one of "those" ER docs that acts like IC patients are drug seekers. It was obvious I was in intense pain and my blood pressure was extremely high from the pain as well so physically it was obvious. It was just nice to be validated by an ER doc.
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Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
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DX: IC - November 2002 after hysterectomy
Interstim implanted March 2006 - died May 2011
Interstim replacement June 2011
Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
Docs: Pain management doc, urologist, family practice -
hope you are feeling better. I would kill to go to the er right now. But like you said I would be labeled a drug seeker. That's what our dr's here do. That's why I've been given tyelnol 3 for my flare. Thursday can't get here fast enough. -
Briza...you hit it right on the head. It feels like someone is stabbing me with an ice pick right in that spot on the left side of my bladder. I have never experienced pain like this before in both severity and kind. It's crazy. I'm having a rescue instill this morning so hopefully that will help. I don't have such good experiences with hydros in the recovery process. I think I do get some relief but the immediate recovery is horrible. It's like my bladder shuts down and getting it started back up is murder. Guess I'll see if the instill works and go from there.Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
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DX: IC - November 2002 after hysterectomy
Interstim implanted March 2006 - died May 2011
Interstim replacement June 2011
Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
Docs: Pain management doc, urologist, family practiceComment
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I hope the instillation works for you.
I am one who is helped significantly by hydrodistention and I've had over 40 in my 36 years with IC. I do plan to take it easy for a few days afterwards, but to me it's worth it for the many months of relief I get. I do have Hunner's ulcers, which do keep coming back.
Sending warm healing thoughts,
DonnaStay safe
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Anyone who says something is foolproof hasn't met a determined foolComment
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I'm hoping it goes well for you today too.Comment
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Had my instill this morning. So far I am more burny than before but the doc wanted the nurse to add DMSO into the rescue instill since he thinks my new severe pain in one spot could be a Hunner's ulcer. I agreed to it since I did DMSO treatments for a long time years ago when first diagnosed until the stopped working. I'm crossing my fingers and hoping this will help - even if I have to have a few. The only thing that bothers me about this uro is the way they do the instills. The nurse takes you to the procedure room and they have you just pull your pants down like you are going to the bathroom and then sit on the table. It's so awkward to just sit there like that. I'm thinking next time I will wear a dress or skirt and take undies to put on after so I have something to kind of cover up with.... BUT this nurse is amazing....the catheter hardly hurts at all. She's better than any I've had in a LLOOOONNNGGG time!Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
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DX: IC - November 2002 after hysterectomy
Interstim implanted March 2006 - died May 2011
Interstim replacement June 2011
Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
Docs: Pain management doc, urologist, family practiceComment
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I hope you are feeling better by today!Comment
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I also have hunner ulcers and the pain is excruciating. Furthermore, because of the ulcer burning, I have a near constant urge to pee. I try to eat wholesome foods and avoid sugar but because I have become so thin from the pain and anxiety, I have to eat foods with lots of fat to keep weight up. I recently had another outpatient procedure in which my uro injected the ulcers with steroids, but he must of missed one of the ulcers-this happened once before. When this procedure goes well, it alleviates most of the pain. I know have to wait 3 months till my insurance will approve another surgery. Just wanted to let you know you are not alone. Prayer/meditation lots of friends support, pain meds and excercise help me cope.DX w/ IC in 2002. Received disability for IC in 04. Have severe IC. Hunner uclers, high frequency, moderate arthritis in lower back, severe Pelvic floor dysfunction. Anxiety due to changing amounts of pain meds. Hips misalignment (left leg 1/2" shorter).
Past treatments: dmso and heparin instillations-in severe pain 24 hours afer emptying, hydrodistensions very painful because of ulcers, interstim twice--both failed due to infections at battery sight. PTNS-didn't reduce frequency. Botox jan 09 in bladder and pelvic floor and steroids placed on uclers. Burning pain 3 weeks after procedure but helped 30% with frequency and 50% with pain and spasms. Botox june 09 in bladder only and steriods injection into ulcers. Not as painful afterwards, put had to bear down to urinate which caused severe tightening of pelvic floor. Helped again with freq and pain. Tried physical therapy past 4 years. Has helped over time. On a regular basis I get deep tisssue massages, acupuncture and see a chiropractor. Had 3 caudal nerve blocks. Slightly improved PFD. Had Sacral nerve streriod injections on boh sides of buttocks. Helped with lower back pain, hip and buttock pain. Pudental nerve block 9-13-09. Severe pain 2 days following. No help with PFD. Steroid injections April 2010. Helped relieve some of the pain and frequency. Pelvic floor lidocaine injections May, August 2010. Noticeable relief of trigger point pain. Steroid injection into hunner ulcer August 2010. Very helpful.
Current meds: percoset, ambien, trazedone, klonopin, flexeril and norethindrone (to control endometriosis). Probiotics and a high fiber/low sugar diet helps help with constipation.
Meds that didn't work or had adverse side effects: elmiron, elavil, lyrica and several others.
On a daily basis I walk 2-5 miles, pray and meditate. All of this gives me tremendous strength and energy in both my mind and body.Comment
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