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Is this just another way of saying I have IC? Did a cystoscopy test and doctor said this was what they came up with. Said to try urethral suppostitories.. Anyone else ever try this?
Thank you!
Thank you!
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Last edited by jjj2007; 05-23-2007, 03:53 PM. -
Hope this helps.............
I have found a few links that you could follow that might help with the diagnosis you were given.
check these sites ot and see if they can help they both seem to say that it is te beginning or is the same as IC. I had neverheard of it but that is ver interesting...........
I hope these are help and if you haveany question feel free to contact me.Started Vaginal Valium Suppositories April 2014
Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
Interstim repair December 2008,Removal of the Interstim August 2011,
6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
Diagnosed with Raynaud's Syndrome November 2013
Ambien 5mg for sleep.
Elivil 50 mg at bed
Lisinopril 20mg in AM
Effexor 225 mg
Oxycodone 10 mgs 2 x a day for pain
Baclofen 20mg 3x a day
Phenazopyridine 200 mg as needed
Omeprazole 20 mg at night
Lyrica 450 mg daily
Requip .50 mg at night
Ketorolac 10 mg as needed for migraines -
HI jjj, Sorry to hear you were diagnosed with IC. It's not easy to leave with but if you start the IC diet right away that should help.
I've never even heard of the urethra suppositories...sorry. There's lots of great IC meds out there that really help.....so if the suppositories don't help maybe you should ask for some of the other meds and give them a try. Good luck to you......at least you've come to the right site! Welcome! 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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Hi there.
I have heard of the urethral suppositories. I believe a women on one of the other boards I belong to, I believe the LS board was using these. She was using them for urethritis conditions. It is suppose to help with the urethral burning and pain for some people. I had asked one of the urogyne's I use to see about this a little while back and he said he did not prescribe them as he said there is no evidence that they even will help, and they can irritate things further. But that does not mean he is right. I believe the women who I know who uses them does get some relief from them so maybe they will help.
JenComment
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Thank you for the info.
In response to Roxie.. they didn't diagnose IC, they diagnosed me with the urethral sydrome. I don't know if in the IC world that's considered the same or not, but they didn't seem to think so!
Thanks!Comment
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HI I'm wondering if MSM gel might help you with the urethra pain? It's sure helped me! 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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MSM gel... that sounds like a good alternataive to medication. It's helped with your urethra? Is it applied directly? The urethra sensation is my only symptom.. don't have pain, frequency, etc.Comment
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HI Yes it's applied directly......just a little on the end of your finger....since it's a gel it spreads around to where it needs to be lol. I buy it online at www.jacoblab.com When I first bought it I used it 3 times a day......not I just use it once a day for maintinance. Let me know if it works for you if you decide to buy it.......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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urethrotriginitis?
Hi jjj2007
yes I have tried the suppositoris now 3 times it's a antibiotic combined with a steriod I use it 3x a week for a month this last time I used it for 2 months and it really helps I also added a couple of rescue installations combined with the treatment I feel very good except I am a sufferer of vestibulitis and
vulvodynia so I'm not 100pct there I was told I have urethritis and trigonitis
every doctor has there own opinion my doctor hasn't diagnosed me with ic since I don't have the hallmark classic ic symptoms .Comment
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Roxie,
What does the MSM gel work against? I don't have pain or burning, just the need to pee (24/7). Does it helps that? Sometimes the feeling seems to come from my urethra (toward the top of it).
Anyways... just wanted to see if SOMETHING will help me...
Thanks![SIZE="1"][B]Be well, Alyssa :hi:[/B]
[Comment
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HI! I"m not sure if MSM gel would help you are not....it sounds like you have more frequency and urgency. Have you tried Freeze dried Aloe Vera? That really helps with those problems. It coats and bladder and helps rebuild the lining. I buy mine from this website's store now......the Desert Harvest brand. I take one capsule 3 times a day.......and have for almost 3 yrs now. 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 thought about taking the Aloe Vera capsules. I have 2 problems with that though. One is, I cannot swallow pills whole. I would have to break it open or crush it somewhow. I don't think I can with those pills. The other problem I have is that my surgeon (he did 2 surgeries on me) consulted the best GI doctor in town about aloe vera capsules (since it seems to affect the colon more than anything). This expert said there are links between aloe vera and a specific type of colitis (can't remember the name right now). He said I should avoid it. So... that scared me from even trying it (if I could find a way to swallow those pills). I do hear that it helps people though...
I'm hoping the Elmiron helps... but I'm also on Atarax, Lexapro... and now I can't take Ultram because that upsets my stomach (because I have to crush it). I talked with my PA last week about trying something like Topomax or Neurontin (sp?) and she said they don't prescribe those. My general doctor would have to. She wanted to talk with the urogyno first and they said to try AZO for a few days. That of course doesn't help me. Urispaz, Urised, and Pyridium didn't help. I just feel helpless. That feeling never goes away. Some days it drives me nuts (like today). Do you have any other suggestions for frequency/urgency... just that nagging feeling that I have to pee?[SIZE="1"][B]Be well, Alyssa :hi:[/B]
[Comment
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HI Born 2 Swim......Gosh I don't have any other recommendations.......I hadn't heard that about Aloe Vera. I've done quite a bit of reading about it and never ready anything like that. Aloe Vera pills are capsules that can be pulled apart and put into applesauce or yogert......whatever. You might try it for a while....see if you have any bad symptoms. 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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Yeah, the colitis was a surprise to me too, considering I did research too. I am thinking that since NOTHING is helping and ALL meds carry a risk, why not, right? I have been on Elmiron for almost 3 months already (with instillations weekly for the past 6 weeks) and not a sign of relief. I wonder if applesauce is tolerated by my bladder...
I got the impression it is not well-tolerated. I'm still doing the part of the diet where everything is eliminated and now I'm adding things to see how I feel. I wonder if I can find baby pureed pears. I bet I could add it to some carrot juice I just got...
Thanks for your help![SIZE="1"][B]Be well, Alyssa :hi:[/B]
[Comment
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Roxie,is it the gel you're taking?
Active ingredients: dimethyl sulfone 15% (150 mg/mL).
Price each bottle:
Qty. 1-5
$14.00
I tougth it was aloe gel you were taking lol
I want to try this for burning pain just under my pubic hair.
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