http://www.ic-network.com/forum Meet other patients in the largest interstitial cystitis social networking site on the web with a support forum, message boards and live support chats - Interstitial Cystitis Network en Sat, 21 Nov 2009 00:26:58 GMT vBulletin 60 http://www.ic-network.com/forum/images/misc/rss.jpg http://www.ic-network.com/forum http://www.ic-network.com/forum/showthread.php?t=61303&goto=newpost Fri, 20 Nov 2009 22:15:23 GMT Has anyone had trouble with diminished sexual feeling/libido on Amitriptyline? I would love to know if this goes away. Also, the breast tenderness. Help!!! Has anyone had trouble with diminished sexual feeling/libido on Amitriptyline? I would love to know if this goes away. Also, the breast tenderness. Help!!! ]]> Antidepressants (Elavil, etc.) Mammac http://www.ic-network.com/forum/showthread.php?t=61303 http://www.ic-network.com/forum/showthread.php?t=61302&goto=newpost Fri, 20 Nov 2009 21:57:33 GMT Achy burning lower back and buttocks, more frequent urination with slow stream, loss of appetite, diarrhea, feeling feverish.. all my typical symptoms of an IC flare. I may have accidentally eaten some low-sugar peaches with splenda in them along with 1 too many cups of coffee the other day and I... Achy burning lower back and buttocks, more frequent urination with slow stream, loss of appetite, diarrhea, feeling feverish.. all my typical symptoms of an IC flare. I may have accidentally eaten some low-sugar peaches with splenda in them along with 1 too many cups of coffee the other day and I vacuumed the whole house and then I got PT that night.. I think it was a combo of too many factors. I wish I knew exactly what was happening to cause the pain that goes all through my back and makes me sick to my stomach. Does that sound like inflammation to anyone? Or does it sound like nerve pain? I have an appt with my rheumatologist in December and he wants me to try Lyrica. If I knew for sure it would help with this type of pain I would try it but I am afraid of the side effects. ]]> Charisse http://www.ic-network.com/forum/showthread.php?t=61302 http://www.ic-network.com/forum/showthread.php?t=61301&goto=newpost Fri, 20 Nov 2009 21:28:15 GMT I have taken 25mg 3 hours ago and now I am totally drowsy.. Nice and relaxed actually..
Will this be every night? What's the best time to take it? ]]> Antidepressants (Elavil, etc.) april ryan http://www.ic-network.com/forum/showthread.php?t=61301 http://www.ic-network.com/forum/showthread.php?t=61300&goto=newpost Fri, 20 Nov 2009 21:00:44 GMT I'm a bit confused......

I was just dx with PFD last week after suffering the last few months with pressure, frequency, and extreme tightness in the pelvic muscles.
A UTI brought on the PFD symptoms this time but I've dealt with bladder issues for many years prior to this. Before this big flare up, I could eat, drink anything without a hitch. Sex has been painful the last few years off and on. The dr. doesn't think I have IC even though for the past 10 years I've had off and on bladder symptoms of frequency that will come and go for weeks or months. I've been on the IC diet for the past 2 months and it has made absolutley no difference. I get up about 1-2 times per night to go pee and I don't have any pain.

I start Phys. therapy next week for the PFD. They're confident this will help with the frequency.

Does this sound like a PFD and IC issue or just PFD? If PT helps will this be an indication is more of a muscle dysfunction? ]]> Pelvic Floor Therapies TXP28 http://www.ic-network.com/forum/showthread.php?t=61300 http://www.ic-network.com/forum/showthread.php?t=61299&goto=newpost Fri, 20 Nov 2009 18:39:25 GMT I accidently hit "Unsubscribe" in my e-mail. Can I cancel that? What do I need to do? ]]> Tech Support : Help! I have a question! SueP1 http://www.ic-network.com/forum/showthread.php?t=61299 http://www.ic-network.com/forum/showthread.php?t=61298&goto=newpost Fri, 20 Nov 2009 15:30:03 GMT I was just diagnosed with IC and my dr. put me on amitriptyline. I have had some weird side effects just after 3 days and sex is horrible! Could someone tell me if the side effects go away or if I am doomed to give up sex and feel like a zombie all the time just to ease my bladder pain? I was just diagnosed with IC and my dr. put me on amitriptyline. I have had some weird side effects just after 3 days and sex is horrible! Could someone tell me if the side effects go away or if I am doomed to give up sex and feel like a zombie all the time just to ease my bladder pain? ]]> Newly Diagnosed With Interstitial Cystitis Mammac http://www.ic-network.com/forum/showthread.php?t=61298 http://www.ic-network.com/forum/showthread.php?t=61297&goto=newpost Fri, 20 Nov 2009 14:22:37 GMT I was wondering if there are longtime Elmiron users who feel it stops working after a few years. I've been on it since 2000, flares could be related back to food & I was fortunate to have a good remission in the last few years. Lately, in spite of sticking strictly to the diet, I am in a flare that just seems to go on and on. The only change was last spring trying 2 blood pressure meds that gave me headaches, and in early Sept. finally settling for hydrochlorothiazide, which is a diuretic. I don't mind the frequency after I take it. It's the all-day burning now (no infection). I've never had installations, but I feel I've been on Elmiron long enough to be better than this now. Any suggestions would be appreciated. ]]> Elmiron For Interstitial Cystitis IC/PBS SueP1 http://www.ic-network.com/forum/showthread.php?t=61297 http://www.ic-network.com/forum/showthread.php?t=61296&goto=newpost Fri, 20 Nov 2009 07:07:24 GMT I didn't have much pain but my frequency has increased, like doubled. Will this subside in time? I had so hoped it would be less due to the procedure. ]]> CathyKi http://www.ic-network.com/forum/showthread.php?t=61296 http://www.ic-network.com/forum/showthread.php?t=61295&goto=newpost Fri, 20 Nov 2009 06:19:02 GMT I just went to Walgreen's to get some more Prelief, and it was on a sale for 10.00$. Reg price here is 11.50$. I know it's sold here through the ICN, and I also don't know if this sale at Walgreen's is available elsewhere or just where I live right now (SW Idaho) or how long it will last, but thought I'd pass it along anyways.

and I appologize for not having been able to introduce myself yet... had a lot of craziness going on in my life the last couple of weeks. I will take the time to introduce myself as soon as I possibly can (but, right now, who knows when that will be)

Hope you all have a great day! ]]> Prelief Acid Reducer for interstitial cystitis wheeliezdryver http://www.ic-network.com/forum/showthread.php?t=61295 http://www.ic-network.com/forum/showthread.php?t=61294&goto=newpost Fri, 20 Nov 2009 06:07:13 GMT I feel like Im the biggest parent failure this week!!!:cussing: my kid isnt turning his work in, I can't get my 4 yr old to potty train for #2 AT ALL, Im using all our money on meds which have been giving me nighttime hallucinations ( see I knew I was messed up ) dr says its mixture of meds, exhaustion and stress YA THINK!! :rant: my family had the flu last weekend and yay Im on my cycle now. they are messed up too. I think someone has a voodoo doll of me and Id like to take the pins out!
I really dont want to do the holidays. my hubbys siblings all make money making me feel like a huge leech and the only family I have besides his is my sister. thank god I have her! but im so stupid for feeling this, I miss my mom and brothers during the holidays. I know I can't have them in my life, its not worth the stress and mind games. I just feel sooo overwhelmed this week I cant take anymore. I hate feeling vulnerable to my fears and tonight I swear they are pressing in.
sorry for this all, I dont know who else to melt down on. my spouse and kids cant handle anymore emotional bouts this week. please Heavenly Father, hold on to me because my knees are shaking!


bromwynn ]]> Bromwynn http://www.ic-network.com/forum/showthread.php?t=61294 http://www.ic-network.com/forum/showthread.php?t=61293&goto=newpost Fri, 20 Nov 2009 04:35:34 GMT Will there be any other procedures done besides the cysto and the potassium test? Will I be able to drive myself home? Will the urologist prescribe me medication for pain, such as vicodin, or should I keep going to my GP for that? Will I be awake or under some sort of anesthetic? Will I... Will there be any other procedures done besides the cysto and the potassium test?

Will I be able to drive myself home?

Will the urologist prescribe me medication for pain, such as vicodin, or should I keep going to my GP for that?

Will I be awake or under some sort of anesthetic?

Will I be informed of all procedures before they are done?

Is this procedure painful?

Will I still be able to come home and take care of my child or will I have to have someone assist me afterward?



Is there anything else I should be asking about> Maybe some of you who have had IC a while might be seeing something I am missing? ]]> Not Diagnosed Yet with Interstitial Cystitis? Talula http://www.ic-network.com/forum/showthread.php?t=61293 http://www.ic-network.com/forum/showthread.php?t=61292&goto=newpost Fri, 20 Nov 2009 04:05:56 GMT Tomorrow a.m. I have an appt with my Uro to discuss my anxiety of having a hydrodistention and I'd love your help in knowing what I should ask him. I've shared in the past that he mentioned my bladder suspension surgery never healed and he was ready to diagnose IC by my Urodynamics, or is it the mesh that might be causing the IC symptoms. He also mentioned the possibility of a hole in the bladder. Knowing this am I worrying for nothing about the danger of a hydro?

I do believe I could have IC, especially since I also had a hysterectomy with the bladder surgery and from some research this possibly has a connection, but is it smarter to focus on the IC first or the "mesh" if that is even possible without a hyrdo. I just feel overwhelmed with all of this and would like your input. I've never had to go to a urologist and I just don't know what options I have. I need to get my head on straight. Does the hydro start a chain of events with the IC?

I've read with amazement the pain some of you ladies are going through and I just don't feel like I'm anywhere near that....My worst pain is feeling like my bladder is going to explode when I have to go and can't get to a bathroom.....I also have burning like a UTI at times, but intermittent, waddle like a lame duck when that knot hits my bladder. The diet has eased many feelings that drove me to the Dr.....I wanted someone to rip out my bladder and give me a bag.

Thanks so much for any help. I haven't been sleeping well, and now I just don't want to feel like I'm going to the dr. for nothing.

Ginger:confused::confused: ]]> nanawaggs http://www.ic-network.com/forum/showthread.php?t=61292 http://www.ic-network.com/forum/showthread.php?t=61291&goto=newpost Fri, 20 Nov 2009 02:40:53 GMT Hi, I just moved to Montreal from Vancouver and I really really need to find a better uro. This guy is just plain ignorant and after 3 nightmare DMSO treatments I'm frustrated to the point of tears.

Any tips on finding a good Uro/IC specialist in this city would be amazing!! ]]> Share Your Interstitial Cystitis Story alabama_worley http://www.ic-network.com/forum/showthread.php?t=61291 http://www.ic-network.com/forum/showthread.php?t=61290&goto=newpost Thu, 19 Nov 2009 23:45:25 GMT http://www.fda.gov/Safety/Recalls/ucm191416.htm

Well this is seriously bad news at the start of the flu season! I use Vicks Vaporub regularly and love it.. but have never used this sinus spray. In any case, I thought some of you might - Jill

Nov. 19, 2009 - Cincinnati - The Procter & Gamble Company (NYSE:PG) announced today it is voluntarily recalling three lots of its Vicks Sinex nasal spray in three countries: the United States, Germany and the United Kingdom.

The company said it is taking this precautionary step after finding the bacteria B. cepacia in a small amount of product made at its plant in Gross Gerau, Germany. There have been no reports of illness. However, the bacteria could cause serious infections for individuals with a compromised immune system, or those with chronic lung conditions, such as cystic fibrosis. B. cepacia poses little medical risk to healthy individuals.

P&G detected this problem during routine quality control at the plant and promptly took action. The company’s analysis to date shows this problem is limited to a single batch of raw material mixture involving three lots of product. These three lots were sold only in the United States, Germany and the United Kingdom

P&G is removing the product in question from store shelves and has informed regulatory authorities in the affected countries. P&G said it found the bacteria B. cepacia in a small amount of product from U.S. lot 9239028831 and is conducting testing on the U.K. and German lots that have been produced from the same batch of raw material mixture.

The lot numbers of the products involved are:

Lot #
Country
Product Name
9239028831
United States
Vicks Sinex Vapospray 12-Hour Decongestant Ultra Fine Mist, 15 ml., Nasal Spray
9224028832
United Kingdom
Vicks Sinex Micromist Aqueous Nasal Spray Solution, 15 ml
9224028833
Germany
Wick Sinex Schnupfenspray Dosiersystem, 15 ml

This lot number is listed on both the outer carton and the bottle. Consumers should simply discard the affected product as they would any OTC medicine.
P&G is removing the product in question from store shelves and has informed regulatory authorities in the affected countries. P&G said it found the bacteria B. cepacia in a small amount of product from U.S. lot 9239028831 and is conducting testing on the U.K. and German lots that have been produced from the same batch of raw material mixture.

Anyone who has these specific lots of this product can call P&G for a replacement coupon or refund at the following numbers:

From the United States, please call: 1.877.876.7881 (Hours of operation: Monday - Friday, 9AM - 6PM US ET, Saturday - Sunday, 9AM - 4PM US ET)

From the United Kingdom, please call: 0800.5555.15 (Hours of operation: 19 November, 4PM - 9PM local time and will continue Monday - Friday, 8AM - 6PM local time, Saturday - Sunday, 9AM - 5PM local time)

From Germany, please call: 0800.111.6131 (Hours of operation: 19 November, 4PM - 9PM local time and will continue Monday - Friday, 8AM - 6PM local time, Saturday - Sunday, 9AM - 5PM local time)

Any adverse events with the use of this product and/or quality problems should be reported via the FDA’s MedWatch Program by fax at 1-800-FDA-0178, by mail at MedWatch, HF-2, FDA, 5600 Fishers Lane, Rockville, MD 20852-9787, or on the MedWatch Web site at www.fda.gov/medwatch.

### ]]> icnmgrjill http://www.ic-network.com/forum/showthread.php?t=61290 http://www.ic-network.com/forum/showthread.php?t=61289&goto=newpost Thu, 19 Nov 2009 23:34:16 GMT There are some conversations that I've had with IC patients that are forever burned into my memories. Patients in denial, patients in pain and patients who simply refuse to take any positive steps forward. Case in point is the husband of a young 20 something IC patient in Amsterdam (Holland) who was in agonizing pain... so much so that she couldn't talk on the phone. A typical urban young professional, she lived on coffee and smoked two packs of cigarettes a day. And when I talked to him and her about the ramifications of that on her bladder, they simply couldn't imagine not living without coffee or cigarettes. I sincerely hope that she was successful because, if not, I have no doubt that at some point in time, she was going to develop either lung or bladder cancer.

Today is the Great American SmokeOut where, around the country, events occur to encourage people to skip smoking just one day... in the hopes that perhaps they will see that it is possible and continue to try to reduce their smoking consumption.

According to the press release from the American Cancer Society "..smokers who quit at age 35 gain an average of eight years of life expectancy; those who quit at age 55 gain about five years; and even long term smokers who quit at 65 gain three years."

• Tobacco use remains the single largest preventable cause of disease and premature death in the U.S.
• Cigarette smoking accounts for about 443,000 premature deaths – including 49,400 in nonsmokers.
• Thirty percent of cancer deaths, including 87 percent of lung cancer deaths, can be attributed to tobacco.
• Smoking also accounts for $193 billion in health care expenditures and productivity losses.

I, for one, just don't get how anyone could think that smoking is cool. You can tell a long term smoker by the often heavy lines and wrinkles in their face, particularly around the mouth. When driving in a car, they just look goofy. But, the real tragedy of smoking is the damage done to innocent bystanders who don't have the benefit of breathing through filter. They are inhaling pure, unadultered carcinogens... and, yes, that includes those children and babies stuck in cars and apartments because their weak willed parents put their habit ahead of the health of their families. If you smoke, for goodness sake, atleast step outside and don't smoke in the car with other people around. Have a care, eh?

And then, of course, we come to the bladder. You think IC is bad?? Bladder cancer is much much worse and, yes, smoking is the #1 cause of bladder cancer. Why? Because as your body tries to eliminate the nasty biproducts of smoke, they pass through the kidneys and into the bladder through your urine. If I remember correctly, the urine of a smoker has more than 20,000 chemical biproducts of smoking. These, my friends, are what trigger bladder cancer. Like little poisons, they attack the bladder wall and begin the cancer process. And, oh yes, if you have IC and smoke, you're giving those chemicals direct access to the inner, more vulnerable parts of your bladder wall through the wounds in your bladder. Are ya crazy??

And, so, I once again plead, beg and cajole every IC patient out there who is smoking. Please stop! You CAN DO THIS! Yes, it might take some trial and error... but with help from the American Cancer Society, nicotine gums and/or even hypnosis, you can break this addiction.

As Nike says, JUST DO IT!!!

"Just sign me the daughter of a former smoker who lives in fear, every day, that her mother might develop cancer. Exposed to smoke for the first 20 years of my life, it really toasts my buns that I have an increased risk too." ::::sigh::::

Jill ]]> icnmgrjill http://www.ic-network.com/forum/showthread.php?t=61289