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I feel like I've been in a flare that will just NOT budge. Nothing makes it better...only worse. Which makes no sense to me and is making me lose hope. PT isn't helping, bladder instillations aren't helping, medications isn't helping...I just want some relief. Taking tons of painkillers aren't even helping. I can't keep going to work unfocused and in pain, but I've used up all my sick days. Thank you IC. When I feel THIS bad it's hard to keep the thoughts from snowballing. I want to lead a normal happy life and I feel like I won't ever be able to.
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I just read your post. I am in the same situation right now, lots of pain. I just wanted to send you a virtual hug, and say that you are not alone. I hope that you feel better soon. I know how hard this is. I don't really have any advice, but sometimes I think it helps to keep your sanity if you know that there are others in the same situation.
Everyday that you wake up and get dressed (yoga pants count), you are successful.
I had to fill out FMLA paperwork, or my boss would have fired me already with as many days as I have missed with this horrible IC pain.
I hope that you have an understanding boss. -
I'm so sorry your feeling as bad as me. That makes me feel awful because I know how awful I'm feeling! I just don't see how I can live with this for the rest of my life! It does not sound like a fun life. I DO have an understanding boss. I can change any shift I need if I need to make it to a doctors appointment. I am up for a promotion...(I'm an LP detective) and that means not only am I beating out the new people...but all the seasoned detectives! So I make myself push through the pain. I literally cry A LOT at work. Esp. because there can be a lot of down town. It sucks. I don't want IC to take my promotion. It's already taken so much. I can only hope this ends soon, and ends soon for you too. :-( It should not be this hard to live.Comment
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I'm sorry both of you are having such a difficult time righ now. Are you following an IC diet 100%? If not, I think that is a good idea. You might also try keeping a diary, noting everything that goes in your mouth, activities, pain levels, and even what kind of soap you use. Sometimes it's possible to find a trigger that way.
I hope your tomorrow is better.
Warm hugs,
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
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. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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I have been sticking to this awful diet to a T. I hate it. It's making me fat because everything I eat must be so bland. (basically all carbs...which turns to sugar...which turns to FAT!). I'm pretty sure my flare ups happen after sex and after running. Both activities one should not have to "give up". I've been a runner my entire life...that is ME. Now I can't run. Fine, I can find a few alternatives I'm not happy with because they make me feel weak...but sex? How could something so nice...and normal end up causing SO MUCH PAIN! How is that fair. There is no alternative to it. Anything I do, I will pay horrifically the next days. I'm not ready to tell my boyfriend...we just can't do...anything. I'm not ready for him to leave me. Intimacy is part of a relationship. I don't understand why this has to happen. :-(Comment
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I was lucky and never experienced EXTREME urgency...but with this flare up...thats the main problem. I can't be apprehending a shoplifter and just say "oh, hold up...gotta pee!". I'm not on any medication for urgency (is there any?!) do ya'll have any tips on how to calm it down. :-(Comment
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Yes, there are medications that help with urgency. The one I'm taking is Levsin, but there are several available --- please talk with your doctor about this.
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
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. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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I do home instillations morning and night (heparin, marcaine, sodium bicarbonate) and that has saved my career. I don't know how often you're doing the instillations, but we started me at two-three times a week & it just wasn't enough. I hope you find relief soon.Kadi
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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.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!
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Oh I know that feeling all too well. It's just so hard to stay patient when the pain just won't go away. When mine started I literally thought I was on my way to a breakdown. My dr. tried to assure me that I would eventually find something that would help but in the meantime it feels unbearable. I have finally found ways to calm everything down, and keep it pretty much that way. It's such an individualized route for everyone that it's really hard to recommend anything. Diet helped but not right away. It took quite a while of eliminating certain foods to see results. I guess the bladder doesn't calm down over night and this was why I was getting so impatient. There are many medications that you can try for urgency and frequency, and sometimes you may have to try quite a few of them to find one that fits. I know it's really difficult to remain calm and patient with this condition but it really helps if you can somehow get the anxiety down. I was given ativan at first because my nerves were just shot. It helped a lot in the beginning and it also helped to calm the overactive muscles that were spasming from the pain.Comment
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I have too...
I have been in a really bad flare for about 6 days now and it is just nasty. I thought it was because I had over done it, but I still hurt so bad. I was wondering if the fact that allergies are so bad in my area this year could be causing the unrelenting flare.
Does anyone else have any opinions on whether or not this might be part of the problem?
KirstenStarted 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 migrainesComment
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Yes, allergies can definitely contribute. My IC is always worse in the Spring than any other season. This year I'm taking Claritin morning & night & it does seem to be helping.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.
------------------------------------------------------
New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
"
Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!Comment
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Kadi,
Thank you for the suggestion I will have to get some of that and give it a try.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 migrainesComment
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I am taking so much medication. I feel so overwhelmed. My doctor told me that I needed to stay off my feet and be careful not to overdo it. I had him write it up for my job. When I get home I am usually on the recliner or in bed, just depending on how exhausted I am. I am trying to count each day as a victory, I haven't given up yet.Comment
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Wow. You sound exactly like me. I thought I was the only one that has tried all kinds of medications - attarax, pristiq, hydroxyzine, elavil, ditropan, enablex, bladder instillations (made things so much worse). I went through over a year of pelvic floor rehab -- helped for awhile. I am in a flare also that just won't go away. The doctor just prescribed Uribel which was supposed to be stronger and more effective than Pyridium - didn't touch the pain. I have been dealing with this since 2006 - nothing seems to work. The only thing that has given me some relief is CystaQ and taking a probiotic. But I still have flares that last for weeks and into months. I get a few days of lesser pain here and there. I don't know what its like not to be in pain anymore.
I have also been diagnosed with Tarlov cysts on the sacral spine; that are sitting on S-1 and S-2 that lead to the bowel and bladder. Surgery is very risky and recovery time is very lengthy (18 mos - 3 years).
Since, meds don't seem to help you either, have you had an MRI of your sacral spine to rule out Tarlov cyst disease?Comment
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I am sorry you are all in so much pain.
I was reading how you were eating mostly carbs - I realized that makes me worse... so perhaps that could be your problem too... justthough I would throw it out there.
Hope it gets better for you soon! Flares suck! The past four weeks have been hard for me...
Current Meds:
1 Elmiron 100mg 3x a day
1 Cimetidine 300mg 2x a day
4 Gabapentin 300mg 3x a day (3600mg)
1 - 2 Atarax 25mg at bedtime
1 baclofen 10mg 3x a day as needed
200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
2 belladonna and opium suppositories as needed for pain daily.
Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)
I have tried but failed -
lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
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