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I am flaring as of yesterday with frequent urination and pelvic and lower back pain. And my pee is hot. Not in a burning my urethra type of way but I would swear it's a higher temp as it runs out. I am thinking of peeing in a cup and sticking a thermometer in it to compare the temp to when I'm not flaring just cause I think this is the strangest thing.
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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 -
I have seen others report this when they are having a flare. I think I have noticed the same thing a time or two also. Not sure why it happens, I haven't seen anyone say that they found anything negative from it. You might want to make sure you don't have an infection though.
SandraLink to the patient information, everything from What is IC? to Disability
http://www.ic-network.com/patientlinks.html
American Urological Association Clinical Guideline
Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
http://www.auanet.org/content/guidel...ent_ic-bps.pdf -
Here is a little experiment you could try, (If you don't have high blood pressure that is). Try doing the 1/2tsp baking soda in water, see if that gets rid of the hot feeling. If it does then that would indicate your urine is very acidic and it might help your flare too!Also if it works you could use calcium/tums/prelief to get your urine to a more neutral state which would probably help relieve your symptoms all around. I just mention the others because I can't stand the baking soda in water!Cindi
Gelnique for frequency/urgency - works great
Macrobid after sex
Prilosec, continuous birth control pills
synthroid .088mg, mucinex-d, restasis
Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil
Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.
IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
Great treatment flowchart on page 19 of the pdfComment
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Yeah I've heard of others reporting it too.. I just am so tripped out by it everytime it happens. I can literally feel it's like hot tub water running over my lady bits. I took Tums the night before it happened actually and I take a sodium bicarb pill for heartburn everyday. My guess is I just did too much yesterday (cleaning and bending) along with a bit too much chocolate. Diet helps me but activity is what seems to put me over the edge. I wish I knew how to fix it. I've also got allergy season just starting here which seems to flare up my IC overnight every single year despite the urologist finding no mast cells in my bladder. I've tried PT which only makes it worse. Elmiron is my saving grace but doesn't stop the flares from happening from activity. My next step is Lyrica. My uro wanted me to try it last year but I wanted one more baby first and I'm due in June so just hoping I can survive the next few months and then I guess I'll have to wait until I'm done breastfeeding too. Right now I just have to lay down with my ice pack (baby kicks when I do this) and if it gets super bad I'll take half a Vicodin.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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Hi Charisse,
when I flare it feels like hot acid to me! I was told to lay heavily on the bottled water to try and rinse the bladder out or dilute the acidity.
Good Luck!
Aleet7DX'd with IC 5/08
other Dx's~SVT: had Catheter
Catheter Ablation Aug 19,2010
Migraines, PFD, Hypertension,
Prolapsed Pelvic
Organs and Degenerative Disc
Disease, Kidney stones, Insomnia
Two bulging discs w/tears and osteo
arthritis in multiple joints in the spine
Current Meds:Elmiron 400 mg per day
Benicar Hct 40-25mg for Hypertension
Norvasc 2.5
Vicoden as needed for pain
Cymbalta 30 mg
Prelief
CystaQ
Prosed
Lidoderm Patch
Psalm 121
I will lift up my eyes to the hills from whence comes my help? My help comes from the Lord, Who made heaven and earth.
"Be Kinder than necessary because everyone you meet is fighting some kind of battle"
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I have this when I put an ice pack against my urethra. For me I'm sure that's what it is, just the change in temp. Because even when I'm in a lot of pain it doesn't feel any hotter if I'm not using an icepack.
You could check the temp when it feels hotter and then when it doesn't. Let us know what you find out.Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevatedComment
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YES!!! It's so funny, I was just thinking out this the other day. This actually only happened to me when my IC first hit. My urine was actually HOT! ( i could feel the heat radiating off it when I put my hand above the water). I told my uro at the time, but he just dismissed it. (But he was not an ic expert). I believe it was that my bladder was so inflammed it was hot & heating up my urine! I have not had that in a long time. Knock on wood, the Elmiron has helped my bladder, now I just deal with a burning urethra all the time-ugh! Try drinking the baking soda in water. I know it's gross, but it should help calm your bladder down.
MelindaP
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I usually only have this symptom when I get get that when I have an infection. I think it would be a good idea for to br checked for a uti just be on the safe side.Last edited by Bekah79; 03-18-2011, 05:38 AM.Rebekah - Diagnosed with IC and Hunner's Ulcers in March 2009
Two Hunner's Ulcers were removed by laser surgery surgery Jan 15 , 2010
Proud Mother of Jeremy Jr. Born on Wed May 4, 2011
"For every door that is closed a new one is opened"
The Lord's Prayer
Our Father, who art in heaven,
Hallowed be thy Name.
Thy kingdom come.
Thy will be done,
On earth as it is in heaven.
Give us this day our daily bread.
And forgive us our trespasses,
As we forgive those who trespass against us.
And lead us not into temptation,
But deliver us from evil.
[For thine is the kingdom,
and the power, and the glory,
for ever and ever.]
Amen.Comment
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It's happened to me several times before and never been a UTI. And it's gone now even though I was still in pain last night my urine was only hot for the first half of the day. I also feel like it's inflammation inside heating it up. I will definitely test the temp the next time it happens. It is weird.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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Diluting your urine with drinking a lot of water might help. I hope so. Hugs, ZiggyComment
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I've had it too
I then try to drink a lot of water to flush my urine out. That always helps the hot burning feeling. I to have used a little bit of baking soda in water and that helps also. Hope you feel better soon.Comment
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I absolutely get the hot hot urine. I too have thought there must be a significant temperature difference. I know I don't have a UTI.
One thing I haven't figured out and I find very curious: my main symptom is blinding pelvic pain. So I would have thought that the hot urine (a secondary symptom) would be in sync - hottest when pelvic pain is most intense. But that's not the case. They aren't in sync.
I find that quite odd, and wonder why that might be.
I have just begun experimenting with Ph strips, so that I can discover accurately whether hottest urine equals highest acidity numbers.______
Severe IC developed fairly quickly, autumn 2010.
So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.
- Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
- Methadone 9 ml/day
- Instillations:
- 40ml Kenalog (steroid for inflammation) 2 x per
week, along with rescue cocktail of heparin,
lidocaine, sodium bicarbonate
- 20ml Uracyst, monthly @ $100/per
- Depo lupron injections for endometriosis, monthly @ $88/perComment
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Let us know if the two are related, I'd be very curious. I usually do take a couple extra prelief or calcium when mine is that way but I haven't tested it.Cindi
Gelnique for frequency/urgency - works great
Macrobid after sex
Prilosec, continuous birth control pills
synthroid .088mg, mucinex-d, restasis
Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil
Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.
IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
Great treatment flowchart on page 19 of the pdfComment
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I've had the same sensation. I always thought it was from the external skin being so irritated from the urine frequency that it was burning my skin and making it feel hot. Interesting to find out if the temperature of the urine actually goes up.Comment
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I've been having a flare for a few days now and boy...it feels like urinating hot acid that burns just about everything down there. My labia hurt and the entire area feels hot. I drink about a gallon/day to dilute this but still hurts.
Only thing that helps is filling a 1l bottle with luke warm water and just pouring it on after urinating, I can only do this at home.
I've tried Calcium - it made me constipated, can't take baking soda.Dg. with IC 2/15/10
Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.
Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.
Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root teaComment
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