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 Fri, 18 May 2012 18:23:24 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=74852&goto=newpost Fri, 18 May 2012 16:04:45 GMT I am so confused. I was diagnosed with IC 8 years ago and am very lucky as I have very few flares in the past. However, after taking a 2 month course of antibiotics for my eye a few months ago, all my IC symptoms got a lot worse. I've been in a flare for 8 weeks now. I'm religiously following the IC diet and have started seeing a new urologist. She has said my urine is very alkaline and she wants it more acidic! I thought the whole point of the IC diet was to make the urine less acidic?! I asked why and she said that alkaline urine is more prone to UTIs. She wants me to take a medicine called Hiprex to make it more acidic. I am far to scared to take it. Has anyone heard of this or been told this before and does anyone have any suggestions? thanks, Fran ]]> General Diet Questions Fruits http://www.ic-network.com/forum/showthread.php?t=74852 http://www.ic-network.com/forum/showthread.php?t=74851&goto=newpost Fri, 18 May 2012 13:44:05 GMT I discovered the When Sex Hurts companion site in a previous post today. However, I can't seem to locate the forum. Is it still in operation?

http://www.whensexhurts.com/forum/

Many thanks! ]]> Romance and Sex When A Partner Has Interstitial Cystitis Library_Girl http://www.ic-network.com/forum/showthread.php?t=74851 http://www.ic-network.com/forum/showthread.php?t=74850&goto=newpost Fri, 18 May 2012 05:15:15 GMT Has anyone had their device taken out and still felt tingly sensations that you would get from the interstim? Every once and awhile I feel a tingling in my pelvic area like I had when my device was on. Didn't know if others have had that or not. ]]> Sacral Nerve Stimulation: Surgical or Interstim Device Failures purrball http://www.ic-network.com/forum/showthread.php?t=74850 http://www.ic-network.com/forum/showthread.php?t=74849&goto=newpost Fri, 18 May 2012 04:29:14 GMT I have lurked on this site now for the last six months but this is my first time posting. I was diagnosed in November 2011, after two years of being told that I had chronic small kidney stones that were causing my pelvic pain and irritating my bladder (causing blood in the urine, frequency,... I have lurked on this site now for the last six months but this is my first time posting. I was diagnosed in November 2011, after two years of being told that I had chronic small kidney stones that were causing my pelvic pain and irritating my bladder (causing blood in the urine, frequency, urgency). I see a urologist who does my kidney stone surgeries( i have had over 25) and a pelvic pain specialist (gyn) who does my IC meds (atarax, elmiron, baclofen) and instills/pudendal blocks weekly. I was referred to a pain management clinic where I had one appt then was dismissed a day before my second appt for missing appts??? I think they got me confused with someone else, but cannot speak to anyone at the clinic because they have an answering service and no one will return my calls (frustrating to say the least). I was sent to pain management because neither my uro or my gyn felt comfortable prescribing narcotics longterm. I have been on Norco starting at 5mg and now up to 10mg off and on for the past three years. Since being dropped by pain mgmt my urologist has taken over prescribing my pain meds but I can tell hes uncomfortable and sometimes have to go days in between refills because hes in surgery or not at that office, etc..I have asked to be referred to another pain management doctor but still in the process (not sure if being dismissed will keep me from getting into a new dr). I am looking into acupuncture/massage. I follow strict IC diet. I just dont know where to go from here. I see one of the premier experts in IC and Im not getting any better. I know that doctors are getting more and more conservative in prescribing medications but they are the only thing that give me a semi-normal life. My pain is 50% of normal with the meds that my urologist will give me. Without them I am on couch with heating pad all day. I have three kids that depend on me to be there for them. Has anyone ever had this happened to them? I was so excited about starting pain management ( they upped my pain meds to a point where my pain was 80% improved). It was like they gave me my old life back and then took it away just because they could.
Im looking back at this and now feel im rambling. I just need to talk to someone who understands, hubby feels like I can just put a band aid on it and feel better. ]]> Pain Management For Interstitial Cystitis Nathanielnholly http://www.ic-network.com/forum/showthread.php?t=74849 http://www.ic-network.com/forum/showthread.php?t=74848&goto=newpost Fri, 18 May 2012 03:59:57 GMT For the most part I'm very grateful for this board but does anyone else find it to be depressing as well. Sometimes I find it I'm more anxious after being on here than before. Hearing about people that never ever get relief is overwhelming me. I can't imagine never finding relief from this disease. Even a little relief. The posts From people who chime in saying " good luck, I've tried everything and nothing has worked" send me into a panic!

Rachael:pray: ]]> marar76 http://www.ic-network.com/forum/showthread.php?t=74848 http://www.ic-network.com/forum/showthread.php?t=74847&goto=newpost Fri, 18 May 2012 03:58:50 GMT My uro gave me Tramadol ER last visit and it made me have a severe flare with a painful bladder that felt like it had swelled up to maximum capacity and major retention problems. This happened about 8 hours after taking the first pill. Obviously, I stopped taking it. The doctor made a comment... My uro gave me Tramadol ER last visit and it made me have a severe flare with a painful bladder that felt like it had swelled up to maximum capacity and major retention problems. This happened about 8 hours after taking the first pill. Obviously, I stopped taking it.

The doctor made a comment about not wanting to "perscribe narcotics" when I asked about pain management :shake: but I need a strong pain med., especially when I flare real bad. I don't necessarily need something like an extended-release to take constantly, but I do need something for major peak pain moments.

Does anyone have any suggestions on what I should ask for? I see him next Tuesday and I want to be prepared.

Thanks! ]]> Pain Management For Interstitial Cystitis Brightside http://www.ic-network.com/forum/showthread.php?t=74847 http://www.ic-network.com/forum/showthread.php?t=74845&goto=newpost Fri, 18 May 2012 03:52:16 GMT I have seen Acai in a lot of healthy drinks and I know it is a "SUPER FOOD" from Brazil. Does anyone know if this fruit is a no-no to most ICers???

Please respond. Thanks! ]]> General Diet Questions Brightside http://www.ic-network.com/forum/showthread.php?t=74845 http://www.ic-network.com/forum/showthread.php?t=74844&goto=newpost Fri, 18 May 2012 03:48:11 GMT Okay, I know most people say they feel worse before their period, but I feel better before mine. AND, to make me further abnormal, I get worse during the week of ovulation-especially afterwards. I know most people feel better... I know most people feel better during ovulation because of the... Okay, I know most people say they feel worse before their period, but I feel better before mine. AND, to make me further abnormal, I get worse during the week of ovulation-especially afterwards. I know most people feel better...

I know most people feel better during ovulation because of the increase in estrogen in their bodies and worse when it depletes. SO, why am I the opposite???

Does anyone else feel better before their period??? What is my problem then-do I have too much estrogen???

I am perplexed.:confused: ]]> Symptoms of IC Brightside http://www.ic-network.com/forum/showthread.php?t=74844 http://www.ic-network.com/forum/showthread.php?t=74842&goto=newpost Thu, 17 May 2012 19:00:09 GMT They will be beginning meetings in late Summer/Early Fall 2012. Lorie Gore, the group leader, is asking interested patients to contact her at: 843-455-1880 or coastalicsupport@hotmail.com Looking for a support group? Find a list at: http://www.ic-network.com/support/ Jill They will be beginning meetings in late Summer/Early Fall 2012. Lorie Gore, the group leader, is asking interested patients to contact her at: 843-455-1880 or coastalicsupport@hotmail.com

Looking for a support group? Find a list at: http://www.ic-network.com/support/

Jill ]]> icnmgrjill http://www.ic-network.com/forum/showthread.php?t=74842 http://www.ic-network.com/forum/showthread.php?t=74841&goto=newpost Thu, 17 May 2012 18:51:51 GMT Hi everyone, hoping to get some feedback. I am suffering really bad with depression and anxiety. These 2 drugs were brought up and I have read about them but I wanted to hear anyone's personal opinions of these drugs. I feel like I take enough but I am mentally falling apart. I also suffer from TMJ which I got from the IC pain. I tighten everything in my body and my face and jaw are now suffering. I have a mouth peice that I need to wear at night so I hope this helps. The jaw tightness is aweful, I hate it. It is almost worse than the bladder pain because I cant bend over or tip my head down it is so painful. I can run to the bathroom a zillion times but I cant deal with the face ang jaw pain. Well now I am going on a rant. Any opinions on these meds are greatly appreicated. Thank you all and I wish you all pain free and happy days! ]]> Antidepressants (Elavil, etc.) Lauralee U. http://www.ic-network.com/forum/showthread.php?t=74841 http://www.ic-network.com/forum/showthread.php?t=74840&goto=newpost Thu, 17 May 2012 16:45:36 GMT :shake:
hi everyone. I'm 27 yr old female and been dealing with IC for over 10 years now. I've had several surgeries, different meds and I just have learned to deal with IC and the pain. To make matters worse, I have ibs since I was 11 yrs old, kidney stones, kidney infections, tons of bladder infections before I had IC, constant female issues, asthma, allergy and sinus issues, oh my gosh the list. Its all been worse the past couple of years and I just want to be normal! No one understands that somedays I just need to relax and let it pass. I can't eat certain things at restaurants, can't travel for long periods of time, even affects the clothes that I can't wear. Its really starting to affect my life and relationships, esp wit the bf. Is anyone out there who understands?!!! In my relationship, I feel SO GUILTY for being sick, is that a normal feeling?? ]]> Introduce yourself and share your story pearlmarie http://www.ic-network.com/forum/showthread.php?t=74840 http://www.ic-network.com/forum/showthread.php?t=74839&goto=newpost Thu, 17 May 2012 02:30:37 GMT I just had to share with people who get it - I have had two internal PT sessions where she stretched all the muscles that were trapping nerves and causing pain, and one session where we did external stretches (IT band, hammies, etc.) Today she added "visceral" work on my belly, and some electrical thing (not a TENS unit, but similar) plus heat and ice for half an hour.
Holy crap - I have only peed three times in 9 hours, and I HAVE NO PAIN RIGHT NOW. None. No urgency, no burning, no anxiety. I feel like staying up all night and enjoying the feeling.
This has come after over 10 years of trying different doctors and different treatments and not fitting any diagnosis and not getting relief with meds and almost getting kicked out of the uro/gyno clinic and finally finding a PT clinic that specializes in IC and pelvic floor issues. The gal I saw today said, "It doesn't matter what your diagnosis is, it's my job to try lots of things to make you feel better." I almost cried! ]]> Pelvic Floor Therapies Chellethinques http://www.ic-network.com/forum/showthread.php?t=74839 http://www.ic-network.com/forum/showthread.php?t=74838&goto=newpost Thu, 17 May 2012 02:17:04 GMT I have had one round of botox injections to my pelvic floor muscles, which have helped with my progress in PT, but did not do much for my symptoms. I am now considering trying botox to the bladder. From what I have read people have pretty mixed results, but it does sometimes seem to desensitize the... I have had one round of botox injections to my pelvic floor muscles, which have helped with my progress in PT, but did not do much for my symptoms. I am now considering trying botox to the bladder. From what I have read people have pretty mixed results, but it does sometimes seem to desensitize the nerves? As that is my main issue - the chronic sensation of needing to go, I was wondering if anyone has had luck with that particular symptom? I have concerns about the retention issues it can cause (I seem to be highly sensitive to that side effect from anything), but truthfully I would rather cath myself regularly if it meant I could stop feeling this sensation all the time! It seems like the lesser of two evils. At this point I have tried so much, I feel like it is this or interstim, and it seems better to try this first as it is less invasive and somewhat lower risk. I haven't talked to my dr yet, but will be seeing her in two weeks, and want to go in with some sense of what I want to discuss with her and make sure I ask all the right questions.

Anyway, any experiences, good or bad, would be welcome.

Also, if anyone has any experience with botox to the superficial pelvic floor muscles (bulbospongiosus, ischiocavernosus, or tranverse perineal), I would love to hear about that. I had only the deeper muscles botoxed, but I have left sided nerve issues that seem to be localized in the peripheral branches of the pudendal nerve that innervate those muscles. I know from reading online that some people have gotten those muscles botoxed, but have not yet asked if they do it where I am seen. So again, any experiences would be welcome.

Thanks, ]]> Botox adechka http://www.ic-network.com/forum/showthread.php?t=74838 http://www.ic-network.com/forum/showthread.php?t=74837&goto=newpost Thu, 17 May 2012 01:39:30 GMT Let me start off by saying that I have tried Elmiron and it did not work for me. I had a cystoscopy one which provided relief for about 6 months, but I don't really want to go through that again. So, I have been trying numerous things over the last 10 years and didn't have much success until about 6 months ago when I started taking NeoCell Super Collagen Type 1 & 3 tablets for my thinning hair and nails and by coincidence I noticed my bladder got better. I wonder if it helps the bladder lining. Anyway, it says take 3 in the morning and at night and I find that i must take all 6, especially the 3 at night, to keep from awakening the next morning in pain.

As I side note, I also find a big contributer to my problems is salty food, especially fast food, and if eating it close to bed time without ample time to drink water to dilute it. Does anyone else notice this?

Try these things and see if it helps you. I know we are all different, but I will be happy if I can help someone. I was in pain the last 10 years and it is nice to find relief. Ahhhhh..... ]]> Introduce yourself and share your story njeneer http://www.ic-network.com/forum/showthread.php?t=74837 http://www.ic-network.com/forum/showthread.php?t=74836&goto=newpost Wed, 16 May 2012 22:42:18 GMT I know this drug has a stigma but I am trying anyhow. I am hoping I can disguss it as my doctor doesn't know much about it. We are experimenting with dose as it is. I am on .5mg every night...increasing to 1.0mg this week. Is anyone else taking this for chronic pain? If so, what dose worked for you. Side effects? Did it help for IC/IBS pain, lower back pain?:confused: ]]> Pain Management For Interstitial Cystitis bladder http://www.ic-network.com/forum/showthread.php?t=74836