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Last week my Uro-GYN said he's not sure I have IC now because my PST was negative excepf for extreme urethral pain when inserting the catheter and the Heparin instills didn't help at all but made me worse. This week I have figured out that what I eat and drink has not made any difference however my pain seems to be directly connected towards physical activity (specifically bending at the waist). I do not have frequency but I will go through spells where I will use the bathroom and immediately afterwards I will feel like I have to go again. And sometimes I can get a little trickle out. I am just so confused and everyone here has been a huge help to me. I am going to let some more time pass before I go back to see him but just wondering if anyone here notices flares from activity and not so much diet? I am wondering if this points to something else besides IC?
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The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
BABY GIRL 10/28/08 *** BABY BOY 7/8/11 -
Have you looked into the possibility this could be PFD Pelvic Floor Dysfuntion..There is alot of good information here on this site..
Maybe that will help
Good luck!
RondaHugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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Ronda yes I have wondered if it's PFD but wonder if that can cause urethral pain too? Also the only other thing that makes me think IC is that Crystal Light and red KoolAid do bring on frequency for me and my flares seem to be related to allergies and springtime.The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
BABY GIRL 10/28/08 *** BABY BOY 7/8/11Comment
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You could have both.. And I have heard that PFD can cause urethral pain.. I really think I have PFD along with IC..Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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I don't know if endometriosis has been mentioned to you. I get a massive increase in my frequency/urgency with an increase in activity (running, bending and twisting too much). I get pain with my periods and pain with running. My doctor said it is likely I have endo and diagnosed me with IC based on a positive PST... but that is the only indication of IC for them. They are talking about exploring for endo in July or August. They wanted to give the IC meds some time to work first to see if they need to explore at all.
Have you had a transvaginal ultrasound?[SIZE="1"][B]Be well, Alyssa :hi:[/B]
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Hi Alyssa thanks for writing. Yes I had a transvaginal ultrasound in May and it was negative but I was told it wouldn't show endometriosis. I don't have painful periods or heavy bleeding but my GYN said he would recommend laparscopy if I don't respond to IC treatments. My new Uro-GYN said he doesn't think it's endo at all so that's where I'm at right now. Frustrated! I think I've mentioned to you before but I have Gastroparesis and I see you had a bout of it from Elavil. I don't take Elavil so mine isn't drug induced but it's really frustrating to deal with. My seems to be related to hormones and low estrogen even though I'm only 33. I feel better when I'm on the pill and my food digests better but I still have to be careful of what and how much I eat or my stomach motility just slows way down and makes me feel awful.The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
BABY GIRL 10/28/08 *** BABY BOY 7/8/11Comment
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Yes, they did 3 TV U/S on me due to my symptoms and they said that symptom wise, I sound like I have both endo and IC. One gyno was pretty sure on both and wanted to do laparoscopy. So, I went to another gyno for a second opinion and he said there is no way it is a gyno problem and sent me to a uro-gyno for IC. That uro-gyno said I am likely to have endo in addition or instead of IC. So, he said that if my IC meds don't help by July (coming up on July now...) that he'll want to surgically look for a problem. H wondered if there was a structural problem because my first symptom came about with running, but he doesn't think that is likely at my age (and without a pregnancy). So... I have an appointment on July 27th to discuss surgery. I'm right there where you are... frustrated. I hope you get some help/answers soon. It looks like if I'm not better by July, I will be having surgery early August (when my summer classes are over). Maybe it will shed some light on my situation and give me some relief...Originally posted by Charisse View Post
I'm sorry that you have gastroparesis. I forgot that was you. I can't believe that just 5mg Elavil did that to me when I've never had trouble with that before (my GI tract usually moves quickly). Oh well, that was one med I wanted to work for me![SIZE="1"][B]Be well, Alyssa :hi:[/B]
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