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Interstitial Cystitis & Painful Bladder Support... - www.ic-network.com | Site profile
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user's latest post:
Remembering what it was like as...
Published (2009-11-12 14:20:00)
I'm so glad you are here. We need you. And you are right --- for every treatment option available, you can find at least one horror story --- thank you for helping to put them in perspective. Donna
user's latest post:
Bladder Removal success? - Page...
Published (2009-11-12 12:09:00)
Wow , I am forever speechless with this. There is NO way I could Tollerate the after math pain from this procedure because I can Not take narcotics of any kind. Violent Reactions to All of them. Plus I heal way too slow. What might take someone 2 months takes me 9 or more. My hats off to you ladies that have done this ! Wow*
user's latest post:
Questions about heavy metals and...
Published (2009-11-12 05:13:00)
Bo, You can start on the yeast free diet for the yeast (lots of info on the net)and my DO prescribed nystatin to help clean it out. I do have heavy metals and I'm getting Chelation treatments. So far I've had 10 and I go today to my DO to get tested again to see if they are all gone. If not then I'll go through another 10 treatment round. I had 4 metal fillings removed last yr. So I'm hoping my levels are still kind of high...
user's latest post:
Frustrated with Elmiron,...
Published (2009-11-11 18:01:00)
Hi Musiclover, I was on it several years ago for 4-5 months and stopped it because I thought it wasn't helping. Dr. Parsons recently told me to go back on it and give it longer. I wish I would have just stayed on it longer back then because then I would have really been able to say whether or not it truly did or didn't help. I want to give it at least a year myself. My copay is $50 so I feel your pain on that one Jill
user's latest post:
adverse reaction to elmiron?
Published (2009-11-12 07:28:00)
Duana - I am in the same age bracket, and yes, hormones play a huge role in this. I am tracking my flares with their relation to my cycles. My sister had her ovaries removed because of this and I may end up in the same boat. I wonder since you said you were already and anxious person, if the Elmiron is amplifying these feelings, or if you are in a place with this disease and or a stage in your life, that is causing this. Make sure you are...
user's latest post:
Heat Packs
Published (2009-11-12 14:26:00)
I just use the stick on ones you can get at Walmart. They work all day!
user's latest post:
Early IC symptoms?
Published (2009-11-12 13:53:00)
I was diagnosed with IC in Sept. of this year. I never had any problems with urgency/frequency except when I would go out to bars and drink. I could drink about 2-3 beer and then have to "go". Once I "broke the seal" I had to go a lot more often, but a lot of my friends are like that too so I didn't think it was a big deal. Could this have been an early symptom of IC? Once in awhile I would also get a...
user's latest post:
Elavil -- Grogginess and Brain...
Published (2009-11-12 04:51:00)
Glenda2, Everyone is different in the medications they can take. One percent of the population is allergic to aloe vera. Some people (like myself) can not handle shellfish and stop breathing. I am also allergic to Darvocet and Percocet. But, this does not mean we should discourage others who may find their "miracle" in this drug. I don't mean to be rude, but it is not good to keep relaying your negative experience to...
user's latest post:
videos of conference with Dr....
Published (2009-11-12 10:23:00)
I found these videos of Dr. Lowell Parsons, the IC doctor many of us have heard of. The videos are from an IC conference back in 2005 but there is lots of good info. You'll notice this is part 1, but there are actually 3 parts, so after you watch this you can find links for part 2 and part 3 on the right hand side of the video. http://www.youtube.com/watch?v=bbm9WmAJUAc Anyway, it gave me hope today because in part 3, Dr. Parsons says...
user's latest post:
bladder infection
Published (2009-11-12 12:53:00)
I am so sorry you are going through this. It might be a good idea to take another urine sample just to make sure there isn't any infection left. Is the pain during urination different than when you were first diagnosed with the infection? It might be IC symptoms, but I think it would be wise to make sure. (((Hugs)))
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Top 10 active forums on Interstitial Cystitis & Painful Bladder Support - Powered by vBulletin during last week:
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Top 10 forums on Interstitial Cystitis & Painful Bladder Support - Powered by vBulletin:
Newly Diagnosed With Interstitial Cystitis
- 22,364 posts
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Interstitial Cystitis Diet
- 15,550 posts
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Pain Management For Interstitial Cystitis
- 9,995 posts
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Symptoms of IC
- 9,988 posts
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Daily Chatter/Off Topic/Life outside IC
- 9,917 posts
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Help! I'm in an interstitial cystitis flare!
- 8,896 posts
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Share Your Interstitial Cystitis Story
- 7,765 posts
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Prayer Requests
- 7,260 posts
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Not Diagnosed Yet with Interstitial Cystitis?
- 5,669 posts
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Cystoscopy & Hydrodistention For Interstitial Cystitis
- 5,243 posts
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Latest active threads on Interstitial Cystitis & Painful Bladder Support - Powered by vBulletin:
Started 4 days, 1 hour ago (2009-11-10 11:41:00)
by Cassaundra
I have only had on hydro. I am thinking of asking for a second one because of how well Ir esponded to the first one.
The first day or two it felt like I was "peeing razor blades". Then it went well after that.
How did your first one go?
Can you take OTC pyrdium or pain medications?
Feel better!
Started 1 day, 21 hours ago (2009-11-12 15:23:00)
by bluetart
that could be early symptoms of ic. I remember when I was a child I would have stange sensation in my bladder, like pressure or pinching or spasming and later in life I had burning of my urethra but not when peeing unlike a uti, but I thought it was just a uti.
Started 5 months, 2 weeks ago (2009-06-03 08:13:00)
by NancyB
Dear Maryla -
So happy to hear that this regimen is working for you.
For the benefit of others, would you mind answering a few questions?
What is in the instill besides GABA? Is this a Rx that you get from the doctor?
If it is a Rx, what exactly does it say it is and how is it written?
NancyB
Started 3 days, 5 hours ago (2009-11-11 07:42:00)
by Bojana
I also want to know about this since I have reflux and I am worried that CP might make it worse. I am on it for few days know and I am experiencing some stomach upset, hopefully it will go away.
Started 1 week, 6 days ago (2009-11-01 02:24:00)
by valkay18
I'm on the verge of tears at this point...
Girls! I need help. I seriously do not know what to do. I am having EXTREME itchiness, and have had it for the last month. I have pretty much eliminated sugar from my diet. I am taking Florajen 3, which is a good probiotic. The only thing I haven't done is gone on the low oxolate diet. I ...
Started 1 day, 22 hours ago (2009-11-12 14:32:00)
by Cassaundra
Have you seen a Physical therapist for Pelvic Floor Dysfunction? That is a good place to start. They can give you several exercises and things to avoid.
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Hot threads for last week on Interstitial Cystitis & Painful Bladder Support - Powered by vBulletin:
Started 6 days, 6 hours ago (2009-11-08 06:38:00)
by ICNDonna
My suggestion is to stop the elmiron and call your doctor. Elmiron isn't the only medication available for IC --- I couldn't take it due to side effects. Have you tried any instillations? What medications have you tried? Have you had a hydrodistention? I feel really sad that you are having such a difficult time --- I hope you and your doctor can find something that will help.
Warm ...
Started 1 week, 3 days ago (2009-11-04 02:13:00)
by vm
I am so sorry you've been hurting like this for so long. I do hope you find some answers soon - and some RELIEF.
Started 5 days, 9 hours ago (2009-11-09 03:00:00)
by kadi
I felt that way in the beginning, but I have had IC for six and a half years now.
There is no doubt in my mind that IC is serious and quality of life destroying, so I am grateful for whatever helps me - diet, medications, physical therapy, instillations.
Every time I take my medicine (oral or instillations) I say, "Thank you God, that this works." and "Please God, let it keep working."
I...
Started 1 week ago (2009-11-07 04:51:00)
by ICNDonna
Some ICers have a problem with the dye in benadryl. However, it's available without dye so you might think about that. I have never heard of benedryl as a possible cause of IC.
Donna
Started 11 months, 1 week ago (2008-12-09 06:02:00)
by Sheila6830
I would die without my estrogen. I had a total hysterectomy over 2 years ago. I am only 40. I recently upped my oral estrogen to 3mg a day (I know this seems high, but it works for me and my doc is ok with it). and I also use my vaginal estrogen cream every night - yes, every night. I have noticed if I skip a couple of days I start to hurt. I saw a big drop in my estrogen during the summer ...
Started 1 month ago (2009-10-09 10:08:00)
by Skynard
Yes, but it WAS for a reason. I was having trouble with my medications and did not realize it. What are you on, if you don't mind me asking?
I have had days where I just cry because I long for my old life. It is gone and I sometimes feel like I have lost a friend or a part of me - feels almost like going to a funeral, if you know what I mean.
I hope you have a better day. You are in ...
Started 4 days, 21 hours ago (2009-11-09 15:45:00)
by kadi
Hi there,
I've been reading these boards consistently for 6 years now, volunteering for a year, & most patients do not have the terrible experience you're mentioning.
Speaking from my own experience, my cysto/hydro wasn't that big a deal & it really helped me to get pictures of what was happening inside my bladder. I had the procedure done on a Wednesday, I went back to work as a teacher...
Started 3 days ago (2009-11-11 12:25:00)
by Cathyp20
It might help to keep a folder with medication names and if they worked or not and side effects. You could keep track of all the tests you have. You might be able to get copies from your doctor. And then if you go to a different doctor you have some records already or if they try to give you something you already have taken you won't have to try to remember it all. Cathyp20
Started 1 week ago (2009-11-06 13:58:00)
by Snowden1
Wow, you have had a go of it already. For some people the hydro's work really well. I hope he is giving you pain meds and an antibiotic (just in case). Hopefully, you are one that they can actually fix the problem That would be great if the source of your issues are coming from the mesh and they can repair that for you. I send you healing thoughts and prayers.
Teresa
Started 3 days, 1 hour ago (2009-11-11 11:55:00)
by Glenda2
Here's your answer > a condition known as pneumaturia. It is most often caused by a fistula between the bladder and the colon, usually as a result of a diverticular abscess, Crohn's disease or cancer of the colon, bladder or female genitalia.
Info obtained from > http://www.doctorslounge.com/nephrol...pic-13673.h tml
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