Interstitial Cystitis? - Mothering Forums

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Old 07-15-2010, 03:53 PM - Thread Starter
 
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Does anyone have this? Is it all the time or only sometimes? I am really beginning to wonder if this is what my problem is.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-15-2010, 04:19 PM
 
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Have you seen JaneS's posts on this? I haven't been around much so I have no idea if she's around much right now, but she's written a lot on this topic, a whole lot, that may be helpful in terms of feeling better.
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Old 07-15-2010, 04:31 PM - Thread Starter
 
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Off to find her posts.

I am very uncomfortable today. It got me thinking and when I googled IC I have these symptoms.

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Old 07-15-2010, 05:51 PM
 
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So sorry you are going though this. I was diagnosed with IC back in 2005. I had tons of episodes (some episodes can last an hour more or less) and it is way painful. I then did a cystoscopy with hydrodystention and it helped a lot! I also did pelvic floor physical therapy but this was all before I had my son and my free time was a lot easier, LOL.

I have been in remission since but lately I think it's starting to come back a little bit. I think one of my triggers was advil. Back in 2005 when it all started, that was my period drug of choice and I think thats what hurt me but can't quite prove it. There is a great message board such as this just on IC and related issues. Once you are diagnosed, they key is to figure out what triggers it - weather it's food, drink or just stress. Stress is a huge trigger.

http://www.ic-network.com/

It's worth a trip to the urologist and to truly make the diagnosis you have to do a cystoscopy w/ the hydrodistention to see how your bladder tolerates it.


Let me know if there is anything else I can help with but in the meantime, see if your doctor can call you in pyridium. That helps with the pain. I am not a huge med fan but when it comes to this, you are almost forced to treat it since it is PAINFUL!
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Old 07-15-2010, 08:05 PM - Thread Starter
 
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I talked with my OB/GYN's office. First I am going for a urine test tomorrow at the lab to make sure I don't have a UTI. Which as the day has gone on I am wondering if I do. I am miserable.

Second, I am going to see a specialist at the Vulvar and Vaginal Disease clinic on August 5th (see my post back in May).

So it could be I am dealing with two different issues. IC and something else. But thats what the clinic will tell me. The clinic is very hard to get into, but since I am already a patient of a SLUCARE Doc, I can be fit in.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-15-2010, 11:45 PM
 
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I should have mentioned that about testing for UTI first. A urologist or gyno urologist is the best bet but I'm glad you have an appt to make the first steps.

Hope you start getting relief soon.
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Old 07-15-2010, 11:56 PM
 
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I'm interested in this discussion because I've been googling IC as well wondering if this is where my symptoms are coming from.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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Old 07-16-2010, 12:14 AM - Thread Starter
 
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I should have mentioned that about testing for UTI first. A urologist or gyno urologist is the best bet but I'm glad you have an appt to make the first steps.

Hope you start getting relief soon.
The specialist I am being referred to, also is associated with Uro-Gyn Department. So I have my basis covered.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-16-2010, 12:14 AM - Thread Starter
 
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I'm interested in this discussion because I've been googling IC as well wondering if this is where my symptoms are coming from.
Are you having the same symptoms I am?

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-16-2010, 02:04 AM
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Try ibuprofen. If ibuprofen helps it feel better, then it's probably IC.

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Old 07-16-2010, 05:26 AM
 
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I was diagnosed back in 1997 or so. It's been pretty much constant. I haven't slept through the night in 14 years or so because of it. I get flare-ups that are really bad and then it goes down, but it's always present, never "normal." I hope it's not what you have because it is truly awful.

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Old 07-16-2010, 05:33 AM - Thread Starter
 
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Okay, now I am bleeding when I pee. Very painful. Alot of rectal pressure and over all ickiness.

Kidney stones?

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-16-2010, 05:52 AM
 
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I have IC.

You might check out http://www.ic-network.com/

I strongly disagree that ibuprofen always helps IC. IC is a blanket diagnoses for a bladder condition but there could be different causes. Ibuprofen doesn't touch my IC. I have a TENs unit, it helps a bit. Antihistimines help me more than anything else. Hydroxyzine works the best for me, a lot of IC patients take it. I do try to take breaks from it now and then


I try to avoid pain meds because I just want to avoid things that will affect me or are very invasive as long as I can. Some of the meds they have perscribed have been pretty scary so I am trying to be careful.

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Old 07-16-2010, 05:56 AM
 
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Okay, now I am bleeding when I pee. Very painful. Alot of rectal pressure and over all ickiness.

Kidney stones?
Oh Anne, I am so sorry




Can you get into a GP tomorrow?

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Old 07-16-2010, 11:12 AM - Thread Starter
 
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I just woke up a little while ago. I ended up taking some heavy duty T3 we had here in the house out of desperation. It finally put me to sleep (I had taken Ibprophen, Ambien and neither worked).

I peed when I got up and no pain or blood. I am going to Quest this morning for the urine test to rule out a UTI.

Jessica,

I am going to bookmark the link you gave me for IC.

Thank you all!

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-16-2010, 11:47 AM
 
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For temporary relief of the bladder issue/pain, are you able to get AZO at your pharmacy or grocery store?

ETA: While I don't have EC, I do have flares of pain in my bladder, intestines and pelvic area due to my fibro. Sometimes the best and only thing that works is a heat pack. (I use those microwavable ones)

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Old 07-16-2010, 04:52 PM
 
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I just woke up a little while ago. I ended up taking some heavy duty T3 we had here in the house out of desperation. It finally put me to sleep (I had taken Ibprophen, Ambien and neither worked).

I peed when I got up and no pain or blood. I am going to Quest this morning for the urine test to rule out a UTI.

Jessica,

I am going to bookmark the link you gave me for IC.

Thank you all!
You might give benadryl a try if ibuprophen and ambien do not help. Different things work for different people, antihistimines work well for a lot of people. Sometimes you just need a hammer though.

You might try that AZO stuff foggy linked. It is only for short term use and makes you pee funny colors but it might help.

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Old 07-16-2010, 05:36 PM
 
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Try ibuprofen. If ibuprofen helps it feel better, then it's probably IC.
This is what caused my flare ups. NSAIDs are known triggers for IC. I don't think that alone will be an indicator if relief is found upon taking. I could be wrong but I have high doubts about that one as this is what hurt me back in 2005. Rule out UTI. I'm glad your going to see a doc to cover all basis as that is really what you need right now. If it's not UTI, then before your appointment with the specialist, I would go on the link I and abimommy gave you. Tons of information on their forums (forums are just like this format on mdc). Do your research and see if there is anything you are taking, eating or drinking that could cause your flare up. I think I used to take a drug called Pyridium (I was only engaged when this was happening so not sure of the safety if pg or nursing). I tolerated it fine, it just makes your pee turn purple, but I did get relief from that. Sometimes I think sitting in the car or sitting anywhere too long can cause a flare. Two of my worst flares were on road trips. Not fun when telling everyone that you need to stop at every truck stop on the trip. AWFUL! The worst part also was not knowing what was wrong, I never heard of IC back then. It kind of makes you feel better when you get answers!
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Old 07-17-2010, 04:19 PM - Thread Starter
 
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Right now we are treating this as a UTI. I started bleeding again yesterday afternoon. Very painful too. I called my OB/GYN's office and told them I had been for the pee test (results should be in tomorrow/Monday). She said since I am having bloody urine she would phone in ABX. Which in this case I have to a agree with. She said if I develop a fever or it gets worse go to the ER.

I have take two doses of ABX and it feels a little better. But still irritated down there and my back hurts some. Which makes me wonder if it's a kidney infection and not bladder. But the ABX should work for both I would think.

Now the question is, is this seperate or related to IC. Guess I will have to wait and see.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-17-2010, 04:21 PM - Thread Starter
 
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You might give benadryl a try if ibuprophen and ambien do not help. Different things work for different people, antihistimines work well for a lot of people. Sometimes you just need a hammer though.

You might try that AZO stuff foggy linked. It is only for short term use and makes you pee funny colors but it might help.
How does Benadryl work with IC? Thats fascinating! I guess I wouldn't suspect to take this.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-17-2010, 04:50 PM
 
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I found that my IC flares with the food chemical salicylate. There is a reason why the 'IC Network Recommended Diet' is low in food chemicals but surprisingly no formal researcher has discovered why. My experience has led me to think it's clearly because the body is not breaking down the food chemicals properly due to nutrient deficiencies.

Try the FAILSAFE diet until detox pathways start working better with supplements: www.plantpoisonsandrottenstuff.com

Epsoms salts baths to provide sulfate for the pst enzyme.

Trandermal magnesium in baths or oil/gel application to quickly get more mag. into your system than oral supps. Magnesium is needed for over 300 enzyme reactions in the body... they won't work if you are low... and the human body is meant to store upwards of 50 grams of it.

Selenium 200 mcg. per day of the methylselenocysteine version.

I suffered for years, and now I only get bladder twinges and minor urgency if I overeat salicylates like lots of high sal foods such as spices, tea, cinnamon and almonds all in one day. Then I eat low sal, up my magnesium and epsom salt baths, and it goes away in 1-2 days.
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Old 07-17-2010, 06:50 PM - Thread Starter
 
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Jane,

Thank you!

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Old 07-17-2010, 08:25 PM
 
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Right now we are treating this as a UTI. I started bleeding again yesterday afternoon. Very painful too. I called my OB/GYN's office and told them I had been for the pee test (results should be in tomorrow/Monday). She said since I am having bloody urine she would phone in ABX. Which in this case I have to a agree with. She said if I develop a fever or it gets worse go to the ER.

I have take two doses of ABX and it feels a little better. But still irritated down there and my back hurts some. Which makes me wonder if it's a kidney infection and not bladder. But the ABX should work for both I would think.

Now the question is, is this seperate or related to IC. Guess I will have to wait and see.

Glad you are on the road to feeling better! Keep me posted either way. I guess it could be IC related if it's negative for UTI or even related if it's positive. I never had a UTI in my journey of IC but I do think it's a regular thing for IC patients, not sure on that. Did you check out the IC network forums yet? Saying some prayers for you!
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Old 07-18-2010, 05:51 PM
 
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How does Benadryl work with IC? Thats fascinating! I guess I wouldn't suspect to take this.
Antihistimines work BEST for me of anything. The antihistamines I take are much stronger than benadryl (I take Hydroxyzine hcl) but benadryl might help. It is easy to buy over the counter.

They don't work for everyone but IC has different causes.

http://www.ic-network.com/glossary/glossaryhydrox.html

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Histamine is one of the substances that are released by mast cells and can cause pain & vasodilation. By blocking histamine release symptoms of IC can be reduced. However, mast cells are not found in bladders of all IC patients.

http://www.ic-network.com/pain/

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Antihistamines can play an important role in the treatment of IC discomfort. Antihistamines help reduce histamine induced irritation in the bladder, particularly in patients with a history of allergies. They may also dramatically improve sleep quality and anxiety. When used with opioids, antihistamines apparently help to increase the pain reducing action of the opioid.

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Old 07-18-2010, 05:56 PM
 
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And like JaneS said, I have also found food chemicals to affect my IC.

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Old 07-18-2010, 06:01 PM
 
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Right now we are treating this as a UTI. I started bleeding again yesterday afternoon. Very painful too. I called my OB/GYN's office and told them I had been for the pee test (results should be in tomorrow/Monday). She said since I am having bloody urine she would phone in ABX. Which in this case I have to a agree with. She said if I develop a fever or it gets worse go to the ER.

I have take two doses of ABX and it feels a little better. But still irritated down there and my back hurts some. Which makes me wonder if it's a kidney infection and not bladder. But the ABX should work for both I would think.

Now the question is, is this seperate or related to IC. Guess I will have to wait and see.
It could be seperate or related. You can still have UTIs and IC. (sucks when that happens!)

I would look for that AZO stuff. It is OTC, it makes one pee funny colors but it is really great for uretha pain. I took it after my cytoscopy (AAAHH!! THE PAIN!!!) and it really helped.

http://www.azoproducts.com/products/azo_standard

.

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Old 07-18-2010, 06:10 PM
 
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The AZO is the best thing ever! Well, for me, at least. I looked at it after I tried it and had major relief (though very orange pee lolol) and thought "Where have you been all my life?!!"

Thanks for the anithistimine suggestion! Having another option is so helpful for me. Sometimes the usual items in my 'toolbox' just don't cut it.

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Old 07-18-2010, 06:16 PM
 
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The AZO is the best thing ever! Well, for me, at least. I looked at it after I tried it and had major relief (though very orange pee lolol) and thought "Where have you been all my life?!!"

Thanks for the anithistimine suggestion! Having another option is so helpful for me. Sometimes the usual items in my 'toolbox' just don't cut it.
The annoying thing about IC is that something that worked great for one person is "do not want" for another. One of the commonly used meds made me hallucinate. I did not like that. At all.

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Old 07-18-2010, 09:36 PM
 
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I just pray to God for you that it's not IC. It's totally manageable but I am glad I flared when I did before I had my son for I benefitted from physical therapy which required lots of time. I like that option over drugs, if it makes a difference. There are a bunch of helpful exercises/stretches you can do if your interested!
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Old 07-18-2010, 11:39 PM
 
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Are you having the same symptoms I am?
I don't see where you described your symptoms. Is it in another thread?

For me I've been getting on and off symptoms sort of like a UTI but much milder. I get weird twinges sometimes when I pee and then I feel a lot of burning and aching in my lower pelvis. Not burning when I pee just bladder/pelvic burning. Some urgency but nothing major. I went in the first time and had a UA done and it showed and elevation of leukocytes but no bacteria. They gave me abx but I never took them and it went away. Then it happened again this month, same symptoms so I took the strips and again, leukocytes but no bacteria.

I don't know what's going on but when I googled leukocytes and ran across a few message boards for IC and people mentioned finding leukocytes without bacteria and having IC. So... who knows!

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