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07-06-2009, 12:59 PM #1ICN Member
- Join Date
- Jun 2009
- Posts
- 5
I have found one way that kind of helps with the flare ups..
This might only be appropriate to try at home, but I have found that it can help if you use an ice pack, or even a popsicle in the plastic wrap, to numb your urethra. I ice the "area" between my thighs, and it helps to numbs it long enough for any other pain medications to kick in, or help numb it until the symptoms subside. It may not work for everyone, but it works for me and I thought I would share it.
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07-06-2009, 01:02 PM #2
Thanks for sharing.. I often use a bag of frozen pees.. Hey you have to do what you have to do to get some relief..
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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07-06-2009, 02:55 PM #3
A cold can of soda, but don't drink it!
Kadi
-------------------------------------------------------------
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
------------------------------------------------------
This week's favorite one-liner:
"Just remember, if the world didn't suck, we'd all fall off. ~Author Unknown
"
New second favorite:
Please, Lord, let me prove that winning the lottery won't spoil me.
- Unknown
Adding a third because I'm just so darn easily amused...
"Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
- Bruce Graham"
Current treatments:
-IC diet
-Elavil 30mg at night
-Ditropan 5mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills every morning and night
-Pyridium if needed, usually once a week or so
-1 Vicodin at bedtime,
-Flexeril 10mg at bedtime
-Dye Free Benadryl for allergies occasionally
-Pelvic floor & myofascial release (external only) physical therapy for 8 weeks, then home exercise program...
-Managing stress
-Fur therapy: Hugging the cat!
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07-06-2009, 03:38 PM #4ICN Member
- Join Date
- Jun 2006
- Location
- Louisiana USA
- Posts
- 726
Ice (and lots of prayer!) has been a life saver for the burning urethral pain I've had these past 22 years. I sleep with an ice pack almost every night.
Cathy

My sweet little doglet!
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07-07-2009, 10:24 PM #5
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07-16-2009, 01:17 PM #6
Hi Bella Spirit
I'm confused, but in the long thread we have going didn't a lot of people say that heat was what was helping them? I kind of remember saying that I thought I'd have to try the heat because it seemed so many were using that instead of cold. A few days ago, I had that night where the burning just suddenly stopped. I knew it wouldn't last and sure enough the next day it came right back. It was so wonderful while it lasted, even if only for an hour or so. All I could think of was "what did I do to make that happen?" If I only knew! Hope everyone is doing as well as possible.
Best,
Dakota
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07-16-2009, 02:30 PM #7
When I first got IC & had a lot of burning, cold helped. When I have a flare that's more muscle related or has pelvic floor tension, then the heat helps. And a few times, I've alternated heat & cold, & that seemed to stop the pain.
Kadi
-------------------------------------------------------------
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
------------------------------------------------------
This week's favorite one-liner:
"Just remember, if the world didn't suck, we'd all fall off. ~Author Unknown
"
New second favorite:
Please, Lord, let me prove that winning the lottery won't spoil me.
- Unknown
Adding a third because I'm just so darn easily amused...
"Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
- Bruce Graham"
Current treatments:
-IC diet
-Elavil 30mg at night
-Ditropan 5mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills every morning and night
-Pyridium if needed, usually once a week or so
-1 Vicodin at bedtime,
-Flexeril 10mg at bedtime
-Dye Free Benadryl for allergies occasionally
-Pelvic floor & myofascial release (external only) physical therapy for 8 weeks, then home exercise program...
-Managing stress
-Fur therapy: Hugging the cat!
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07-16-2009, 03:48 PM #8
Hi Dakota
Lol, I'm confused now too.
It seems that both heat and cold can both work well depending on the type of pain (as Kadi said).
I've tried heat and that seems to help temporarily, I'm yet to try cold.
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07-16-2009, 04:12 PM #9
heat vs. cold
Hi, I asked the PT about the heat vs. cold deal as I have been confused for years. She said the hard and fast rule is w/ INJURY cold should be used for up to the first 72 hrs. to reduce smelling and then heat to aid in circulation to heal tissue.
She said w/ anything else to use what is most comfortable and if using heat and cold to just end w/ the cold b/c it can get back to body temp quicker.
We use heat in PT to relax muscles before stretching and such.
Sometimes when I have burning pelvic pain I feel like ripping open my pelvis and dropping in an ice pack and not adding heat. The heat seems to reduce muscle tension, increase circulation and aids in relaxation as cold usually makes a person tense up.
W/ external burning I would use what feels good. If my external skin was burning w/ pain it would make sense to put a cold compress on it b/c that would feel good.
Basically, barring injury, use what feels good. That's the heat vs. cold info I rec'd from PT.
Hope this solves some confusion and didn't add to it.
hugs,
Ophelia
Dx'd
IC: May 2007
GERD: 2002
Hypothyroidism: Nov. 2007
Major Depressive Disorder, Borderline Personality Disorder, and Generalized Anxiety Disorder: 2005
Endometriosis: lap. confirmed Sept. 2007
PFD: June 2009
Allergies: PCN, Sulfa-drugs, Trileptal, Topamax, nuts, shellfish, salmon, lactaid tablets
Intolerance: dairy products
Current Tx:
IC: Elmiron 100mg 3x/day, Heparin/Lidocaine instills 1/week, Pyridium PRN, Urelle PRN, Darvocet PRN (mostly for menstrual cramps), DH calcium carbonate+D, vitamin D, omega-3 fish oil, Prelief, IC diet
PFD: Physical Therapy
Endometriosis: LoOvral
GERD: Protonix
Allergies: Flonase, Benadryl PRN, Epipen PRN
Hypothyroidism: Synthroid
Mental Health: Remeron, Tegretol, Psychotherapy
Tried but unlucky Tx:
IC: atarax/vistaril, zyrtec, claritin, elavil
GERD: aciphex, prilosec, nexium
Endometriosis: yasmin, nordette, ortho-novum 777, lybrel
Mental meds: paxil, lexapro, celexa, zoloft, cymbalta, luvox, prozac, effexor, wellbutrin, straterra, elavil, sinequan, emsam, trazodone, ritalin/concerta, trileptal, topamax, neurontin, depakote, lithium, seroquel, lamictal, abilify, zyprexa, risperdal, invega, geodon, klonopin, ativan, xanax, restoril, ambien, lunesta, rozerem, buspar, ECT-4 txs.
Wish: cure for all illnesses and world happiness
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07-16-2009, 04:49 PM #10
Thanks Kadi and Ophelia that does help clear up the confustion, and makes sense. I've tried the cold but not the heat. I killed my last heating pad, and have not replaced it. I'm going to get another and give it a try.
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07-16-2009, 05:01 PM #11Dx'd
IC: May 2007
GERD: 2002
Hypothyroidism: Nov. 2007
Major Depressive Disorder, Borderline Personality Disorder, and Generalized Anxiety Disorder: 2005
Endometriosis: lap. confirmed Sept. 2007
PFD: June 2009
Allergies: PCN, Sulfa-drugs, Trileptal, Topamax, nuts, shellfish, salmon, lactaid tablets
Intolerance: dairy products
Current Tx:
IC: Elmiron 100mg 3x/day, Heparin/Lidocaine instills 1/week, Pyridium PRN, Urelle PRN, Darvocet PRN (mostly for menstrual cramps), DH calcium carbonate+D, vitamin D, omega-3 fish oil, Prelief, IC diet
PFD: Physical Therapy
Endometriosis: LoOvral
GERD: Protonix
Allergies: Flonase, Benadryl PRN, Epipen PRN
Hypothyroidism: Synthroid
Mental Health: Remeron, Tegretol, Psychotherapy
Tried but unlucky Tx:
IC: atarax/vistaril, zyrtec, claritin, elavil
GERD: aciphex, prilosec, nexium
Endometriosis: yasmin, nordette, ortho-novum 777, lybrel
Mental meds: paxil, lexapro, celexa, zoloft, cymbalta, luvox, prozac, effexor, wellbutrin, straterra, elavil, sinequan, emsam, trazodone, ritalin/concerta, trileptal, topamax, neurontin, depakote, lithium, seroquel, lamictal, abilify, zyprexa, risperdal, invega, geodon, klonopin, ativan, xanax, restoril, ambien, lunesta, rozerem, buspar, ECT-4 txs.
Wish: cure for all illnesses and world happiness
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07-16-2009, 05:37 PM #12
One thing I've found is that a heating pad on my low back, butt, really helps with IC pain. My physical therapist said it relaxes the tense pelvic floor muscles.
Kadi
-------------------------------------------------------------
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
------------------------------------------------------
This week's favorite one-liner:
"Just remember, if the world didn't suck, we'd all fall off. ~Author Unknown
"
New second favorite:
Please, Lord, let me prove that winning the lottery won't spoil me.
- Unknown
Adding a third because I'm just so darn easily amused...
"Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
- Bruce Graham"
Current treatments:
-IC diet
-Elavil 30mg at night
-Ditropan 5mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills every morning and night
-Pyridium if needed, usually once a week or so
-1 Vicodin at bedtime,
-Flexeril 10mg at bedtime
-Dye Free Benadryl for allergies occasionally
-Pelvic floor & myofascial release (external only) physical therapy for 8 weeks, then home exercise program...
-Managing stress
-Fur therapy: Hugging the cat!
-
07-17-2009, 12:42 PM #13ICN Member
- Join Date
- Apr 2009
- Location
- Charlotte, NC
- Posts
- 73
When I have a flare my urethra goes into an intense spasm, so I think that is why heat helps me. It seems to relax those spasms some. Although I relate some to the burning sensation, that isn't my main issue. It is the spasms and the feeling like I have to pee like crazy.....but I don't. I can actually feel the twisting & turning and the stabbing feeling that spasms cause....I am getting sick just talking about it!
I have been doing very well lately, and I am suppossed to start PT next Friday. I am a little scared to rock the boat, so-to-speak. Yet I know that I must have PFD, and sooner or later it is going to rear it's ugly little head. My new job is super demanding, super challenging, but I am feeling better about myself, you know? I CAN do this, and it is doing a lot for my self esteem. The 9 and 10 hour days are killer, though! I just keep reminding myself that I am making a lot more money!!LOL
I am keeping all of you in my prayers
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07-18-2009, 02:30 AM #14ICN Member
- Join Date
- May 2009
- Posts
- 15
Hi Denny Sue,
Congrats on your job!!!!
When you're at work, away from heat and cold, try drinking a lot of water. That really helps me--i drink so much water that I get a headache from it sometimes. But it really stops the pain. And I feel like I have to go to the bathroom less. Go figure! Good luck.
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07-18-2009, 02:45 PM #15ICN Member
- Join Date
- Jul 2008
- Posts
- 54
cold
this might be a weird question but i have a vaginal dialator for my vulvodynia and pfd..do you think freezing it or refrigerating it before i use it would alleviate some of my urethral burning? haha thanks. i guess i am not really embarrassed to ask anything anymore after going through all this -
ducky
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