I had my hydro today and the doc took two biopsies. I am a bit sore tonight but not intolerably, however I am still going to the BR constantly! He said if this isn't IC, then he is doing a spinal MRI to check for a disc or some other reason that the nerves innervating the bladder are somehow compromised. Has anyone else ever had this procedure? He also said the IBS with constipation is making the urgency worse. I figured that one out myself! Have any of you been tested for nerve disfunction related to the bladder and urgency/frequency? I will get the biopsy results on Monday. Today, he said the bladder looked pretty good inside except for those two spots that bled. Thanks for all your encouragment and hope. I am still having ridiculous frequency, but my daughter said the nurse told her it might be worse for a couple of days. I just want some relief from the incessant trips to the BR with little resultant urine or, sometimes a lot of urine five minutes after going before. ARGHHHHHHHHHH!!!!!!!!!!!!!!!
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HI! Have you tried any of the bladder medication?? Azo is over the counter....for quick relief. Elmiron is a prescription to help heal the inside of the bladder. Elavil helps greatly with frequency and urgency. Freeze dried Aloe Vera coats the inside of the bladder and helps with pain (I've been on it for 3 yrs now and love it!)
Has your doctor dealth with IC patients before? It sounds like he hasn't but is doing some hard core testing. I've never heard of anyone having a spinal MRI with symptoms of IC. Have you thought about finding a dr. who is an IC specialist?? I think it would be in your own best interest! Good luck! Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Hypothyroid
Dx'd Chronic Axonal Neuropathy & Myopathy
June 2007
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo: -
nogo, I don't know about any of the things you asked except for the spinal MRI. My IC didn't start until I had a spinal fusion due to L5 crushing the nerve bundle out of S1. I firmly believe that IC has many causes and it is smart of the doc to check your spine to see if it is nerve related.
Best of luck to you!
Carol8/2007 - My constant bladder pain is now gone due to a surgery where the ilioinguinal and iliohypogastic nerves were cut. I still have IC symptoms but they are improving. It's still early to say, but I believe this solution will work permanently for me.
Symptoms since 2005 - 24/7 abdominal pain, cold sweats, low back pain, vulv, etc.
Surgeries: Spinal Fusion L4-L5-S1 10/97, Anterior spinal fusion L5-S1 9/05, Lap for Cysts, Endo 9/06, Hysterectomy kept cervix 12/06
Meds: Morphine, Neurontin, Valium, Hydroxyzine, Vivelle Estrogen, Thyroid,
Exercise & PT: All at least 4 times a week
Whirlpool baths, Moist heat, Treadmill, Stretching, Trigger point, Yoga Positions; Ab & Pelvic MassageComment
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Nogo, I do believe IBS and constipation can make the urgency worse. It seems to put more pressure on the bladder. It sounds like you have a very good doctor and your doctor wants to get to the root of the problem. I hope you find out soon what it is so you can get treatment for it and start feeling better.
Take care, TrishannComment
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I will let you know what goes on with the spinal check et al. I too, think that the IBS-C is playing havoc with my bladder and the urgency is just exhausting and so painful. I have no idea how much I have gone today, but I am still stuck at home trying to cope. I really don't have anything else I can do until the doc calls on Monday. This is such a life altering condition as you all know. Whether it is labeled IC or just the symptoms, it is a devastating condition. I can't even imagine relief at this point. I have been looking at relaxation tapes online to order something, ANYTHING that will help me with my bladder issue. I am up most of the night even with Ambien on board, followed by Sonata at about 4 a.m. I just need a break here. Again, I can't imagine how you all do this with such grace. I am afraid my husband is nearly at his wit's end because it always seems to be something wrong with me. Either the IBS, IC symptoms or migraines as a result of the stress from it all. We have no life together since Ijust can't go out to dinner or anything at this point. I hope it will eventually get better. I can't live this way. Thank you for your help.Comment
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Nogo, Have you tried dried prunes for the IBS-C? I suffered with that for years and over the years several dr.s told me to eat prunes. It just sounded way to simple to me since I was trying everything else on earth! Finally after having to use enemas I decided to try prunes.....and low and behold....they really do work! I eat 4 or 5 every day......and that is the key.....every day! I haven't had constipation in a cpl years now and continue with the prunes. It's truly fiber, fiber, fiber........it works wonders! Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Hypothyroid
Dx'd Chronic Axonal Neuropathy & Myopathy
June 2007
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:Comment
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ROxie, I use prune juice with pulp, about 8 oz. and sometimes it works andothers it doesnt'. Unfortunately, my potassium intake is limited becaues I have oxalate kidney stones. That also rules out most fiber. It is unbelievable...the things that can help me the most are forbidden.Comment
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Nogo,I heard of the spinal cord theory that when its damaged it causes ic.There are tests being done to see how the spinal cord is involved.People with back problems seem to have a higher incidence of ic, so they say.More research needs to be done in this field.Maybe your doctor is on to something.I wish it was that simple.Wouldnt it be nice if the cause was a pinched nerve in a disc.
One day hopefully the cause will be found and it can be corrected.
Im sorry to hear your still suffering.Hopefully tomorrow will be a better day for you.Some people have no idea how bad ic is.It really changes your life for sure.
I can go on and on about my stories and about my ic.Somedays I just want to put a sign on my car telling the whole world I have ic.I have to stop so much to go.I feel like wearing a t-shirt that says "I have ic"I have to plan everything around a bathroom.What used to be a simple thing like stand in a line at a grocery store and then try not to panic.Most people do these things everyday.But for an ic person its a real big deal!
GoldSeals54 year old male
Diagnosed with IC in 1994
Had symptoms since 1992
Three cystoscopies.One biopsy with hydrodistention.
This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and QuercetinComment
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i had a full mri workup (head/full spine) as i have white matter spots in my brain and a large cyst. i suffer retention so doc wanted to see if a nerve was causing it. found out i have 2 herniated discs (the one in my neck just keeps getting worse despite chiropractic care...i'm dying it hurts so bad i can't MOVE) but they claim nothing is inpinging on a nerve to cause retention. sometimes i wonder. GOOD luck.(Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).
Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).
I'd like to be on House, MD as a medical mystery.
Married to Craig, a saint amongst men...who puts up with me and my eccentricities...
Connor & Mommy by the tree:
Connor with Santa...so happy!
I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!
Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...
I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!Comment
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I also have IBC and have found that getting that somewhat under control did ease the pressure and frequency symptoms from IC. I've been successful with MiraLax to regulate the IBS. Then I'm able to control my IC symptoms with just diet modifications.
I've had about 6 MRIs in the past 3 years, but that was due to a spinal tumor not my IC. Since an IC diagnosis is often a diagnosis of exclusion, it is good that your doctor is checking every possible alternative to your symptoms.Comment
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shell, how often do you take miralax? i USED to have ibs-d but b/c of rectocele/rectal prolapse it's been more like impossible C!!!!!! (actually it's difficult to evacuate my bowels no matter how hard/soft). anyhoo, i'm on miralax but don't want my bowels to become "dependent" on laxatives, that terrifies me. how long have you been on it? every day?
thanks.(Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).
Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).
I'd like to be on House, MD as a medical mystery.
Married to Craig, a saint amongst men...who puts up with me and my eccentricities...
Connor & Mommy by the tree:
Connor with Santa...so happy!
I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!
Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...
I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!Comment
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I had a spinal MRI last summer for pain (I was not having any urinary symptoms though). The MRI was not fun. I mean, it wasn't torture, but it was awefully enclosed and loud. I took a CD that they played via headphones for me and I tried to zone out. I got my entire spine checked. I was having right upper quadrant pain that ended up being a sneaky gallbladder problem. But anyways... they did see some compressed disks, degenerated disks, and partial slips in my lower lumbar. It pointed out no nerve damage. So, if there is something going on with you nerve wise, you should be able to see it on the MRI.
Good luck and don't forget a CD! I hope you can play one![SIZE="1"][B]Be well, Alyssa :hi:[/B]
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MRI's are funny. I find that old clanking sound relaxing while it grates on other (most) people's nerves.
The enclosed space was the most difficult thing for me to deal with as I'm claustrophobic anyway. My husband had one on his knee last year and he was able to have it with his head sticking out. Lucky guy!
If you are worried about it, ask your doc for a dose of Xanax or Valium before you get in there. I will ask if I have another - just for the claustrophobia.8/2007 - My constant bladder pain is now gone due to a surgery where the ilioinguinal and iliohypogastic nerves were cut. I still have IC symptoms but they are improving. It's still early to say, but I believe this solution will work permanently for me.
Symptoms since 2005 - 24/7 abdominal pain, cold sweats, low back pain, vulv, etc.
Surgeries: Spinal Fusion L4-L5-S1 10/97, Anterior spinal fusion L5-S1 9/05, Lap for Cysts, Endo 9/06, Hysterectomy kept cervix 12/06
Meds: Morphine, Neurontin, Valium, Hydroxyzine, Vivelle Estrogen, Thyroid,
Exercise & PT: All at least 4 times a week
Whirlpool baths, Moist heat, Treadmill, Stretching, Trigger point, Yoga Positions; Ab & Pelvic MassageComment
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Hi Nogo,
There was a clinic trial done by a Warren Hammer in 1997 I believe. He is a Chiropracter and within the trial he helped quite a few people with IC just by medically untrapping nerves connected to the bladder. I think he has a web site too. Perhaps put his name into google and you might find the piece. I was thinking of saving up for the MRI to be done on myself as they wont pay for it on the NHS in the UK.
Good luck. I hope it goes well.
Best wishes
MishqueComment
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