Thread: Where is you IC pain located?
02-16-2009, 02:25 PM #1
- Join Date
- Jun 2006
Where is you IC pain located?
Mine all the time is through my whole belly. Goes from the belly button all the way down to "down there". Then it shoots through to my back. I just wonder how the bladder could reach all those places? When the pain is really bad then it is up in my lower ribs.
02-16-2009, 02:39 PM #2
Below the belly button. If really bad, it goes down my legs. On my right leg, the pain will run like electricity down to my big toe. (Weird, I know) Oh, and I get very specific sore spots on my buttocks, hips, & thighs.
Yes, the human body is a highly creative design....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.
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"
-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...
-Fur therapy: Hugging the cat!
02-16-2009, 02:46 PM #3
- Join Date
- Jun 2006
It will go down my legs too. Who would have thought one little tiny bladder could cause so much pain and in so many places?
02-16-2009, 02:52 PM #4
Lower abdomen and lower back.Jolene
"Life is what happens when you are making other plans" John Lennon
IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html
Information for Patients can be found here.
Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]
Newbie Angel...I will be happy to answer any questions or just listen. Email me at email@example.com
"IC Angel 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."
02-16-2009, 03:37 PM #5
From my belly button around to my sides all the way down to the pelvis and yes it will go down the legs when in bad spasms and into my back!!Hugs
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:
Diet Reference Sheet:
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.
02-17-2009, 02:23 AM #6
Goodness...i have experienced new pains in the past few weeks. I am constantly having low back pain (Dr. E said it was referred bladder pain), low abdominal pain, tailbone pain and now on the left and right side of my lower abdomen (its actually boterhing me right now while at work) and sometimes shoots down my legs. It's enough to drive a gal crazy!!!Dx's: Moderate IC, PFD, Infertility, Chronic Lower Lumbar Issues/Sacroileitis.
Current Meds: Gabapentin, Hydroxyzine, Zyrtec, Pyridium, Lidocaine/Sodium Bicarb/Elmiron At-Home Instills, Macrobid, Prilosec, 2% Lidocaine Gel, Ativan, Hydrocodone.
Meds that Didn't Help: Ultram (Severe Retention), Tylenol 3 (Itch), Lyrica, Wellbutrin, Lexapro, Elavil.
IC Handbook Link: http://www.ic-network.com/handbook/
02-18-2009, 11:26 PM #7
The primary location of my pain is actually inside my bladder!
While I frequently have other areas of pain and spasms, the "constant-ground-glass-churning-pain" (then add lemon juice on top of that)--24/7--is by far the most painful, and clearly coming from inside my bladder.
~BethI am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.
Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009
Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD
Users Browsing this Thread
There are currently 1 users browsing this thread. (0 members and 1 guests)
By ICLori in forum Pain Management For Interstitial CystitisReplies: 45Last Post: 09-17-2012, 12:23 AM
By Sheila6830 in forum Pain Management For Interstitial CystitisReplies: 6Last Post: 05-30-2010, 04:38 PM
By icnmgrjill in forum Pain Management For Interstitial CystitisReplies: 42Last Post: 09-01-2008, 03:35 PM
By Janice in forum Sacral Nerve Stimulation: Surgical or Interstim Device FailuresReplies: 15Last Post: 01-01-2007, 04:47 PM
By SandyRN in forum Pain Management For Interstitial CystitisReplies: 31Last Post: 10-14-2005, 04:54 PM