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 Sun, 20 May 2012 08:25:21 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=74861&goto=newpost Sat, 19 May 2012 22:40:15 GMT I'm so incredibly desperate for answers. I've been struggling with recurring upper & lower UTIs for the past 18 months. I was hospitalized 4 times last year for kidney infections. I've already been through one urologist who was as helpful as a box of rocks. He did a cysto and failed to inform me whether or not I had IC. I had to wait 2-3 months for an appointment if I had any problems.*

I've been to the ER 4 times in the last month: the first time I was told I had a kidney infection. A week later I became ill again and was DX with another kidney infection. I felt even worse the next day so I was told by my family doc to go back. I went and they checked the previous day's labs and said there was nothing wrong with me. FFW another week. I gave a urine sample to my uro on Monday and was told it was clear. I ended up back at the ER on Thursday because of fever, uncontrollable nausea, abd. & flank pain and was told I had a bad kidney infection. The pain was so bad that neither demerol nor morphine worked. They had to give me dilaudid to ease the pain.

Went to follow up with my doctor yesterday and he said I didn't have a UTI but had a ton of protein spilling over in my urine. He's ordered a VCUG scan and a gastric emptying scan. My new uro has already done a cysto and said my bladder looked perfect, but said I could still have IC. He put me on a 6 wk course of Macrodantin (nitrofurantoin) but I had to discontinue after a week because it made me so sick. I've got a month left before I see him again. I called my family doc tonight because I'm so weak that all I can do is lay on the couch. I hurt to the point that it's been making me cry. I just don't know what to do anymore. ]]> Not Diagnosed Yet with Interstitial Cystitis? southern_belle http://www.ic-network.com/forum/showthread.php?t=74861 http://www.ic-network.com/forum/showthread.php?t=74860&goto=newpost Sat, 19 May 2012 20:56:12 GMT Does anyone know what the acronymn SWIPE stands for when talking about treating fibro. I saw it on the web somewhere but of course cant remember where. Wrote down and can't remember where i wrote it down. Very frustrated. Since I can't get the meds I need I need another approach.:bonk: ]]> Fibromyalgia iccutie82 http://www.ic-network.com/forum/showthread.php?t=74860 http://www.ic-network.com/forum/showthread.php?t=74859&goto=newpost Sat, 19 May 2012 18:33:13 GMT Hello everyone,

I wasn't really sure where to post this, so here goes. I've done some searching here on the forums about flying with IC, and found a few helpful posts, but I still have some questions. My husband and I are going to the Bahamas in about 3 weeks. Thankfully, it's not an overly long flight -- about 3 hours. I'm worried though about all the medications I take. Do I need to have some kind of doctor's note, or is it fine to take all my meds in my carry-on bag? I don't want anything to be confiscated or questioned. I'm not taking my instillation ingredients, but I do plan to take everything else in my signature, plus xanax and an acid reflux medication. I've been trying to find information about traveling internationally, and what I'm finding says I should have a note. That means I'll have to get notes from multiple doctors.

Seems this may turn into just another headache for me. Anyone have any advice? Or better yet, anyone ever travel to the Bahamas with multiple prescription meds before? ]]> Introduce yourself and share your story skybluesoul http://www.ic-network.com/forum/showthread.php?t=74859 http://www.ic-network.com/forum/showthread.php?t=74858&goto=newpost Sat, 19 May 2012 01:30:48 GMT I know this should be in the, "College Students with IC" section, but there seems to be some kind of glitch, and all of the sudden I cannot access that section.
Anyways, I am trying to complete a college application as a transfer student, and I now have to write the essay...about what I have been doing since last being in school. :help: Umm...peeing in cups? Taking more pills than a drug addict? Having my Queen Victoria massaged (during PT)? I mean, what am I suppose to say?
I am going to say I have been struggling with my health (including IC), and I have been undergoing various treatments, but what should I say? Please do not write the essay for me, but any advice or suggestions? And no, I do not need to be advised not to mention my Queen Victoria! :lmao:
Please help me. Really, only other ICers are the only people who can help me answer this question. Thank you! ]]> Teens with IC tierney http://www.ic-network.com/forum/showthread.php?t=74858 http://www.ic-network.com/forum/showthread.php?t=74857&goto=newpost Fri, 18 May 2012 23:23:40 GMT I tired edival before for migraines and for IC both times I had to quit because of going into total unrinary retention.

I didn't find that it helpped the migraines at all but I did think it helpped my bladder.

My Dr. and I decided to try it as a vaginal supp to see if I could maybe get the bennifits of it but not the side effect.

I had some compounded for me I specified I needed what ever they made them with to be very skin friendly as with VV my skin doesn't like any additives etc.

I got the supp tried one and it seemed to help and the creamy stuff that came out seemed to be very soothing, so I thought all was good.

I was rxed to you one each night to start with so I did just that.

When I took elival orally it didn't make me sleepy at all but I slept better on the nights I took it vaginally so this was a nice bonus, I even had a night that I slept through the night a first for a very long time for me.

The bad news is by the 3rd am I realized the retention was rearing it's ugly head again so I stopped the supp, then on the 4th am I woke to being red, raw and very sore from piller to post, worst VV flare in over a year, 6 days later and no sign of it improving.

This is such a pain, and now I am afraid to try the vaginal valium one I had made becuase I see they used the same base in them, and this is different from before.

I have to call the compounding pharmacy and talk to them to see what they used.

Hopefully I actually reacted to the elival it's self and not what it was mixed with, or I just wasted a bunch of money, both of these supp.

It's my own fault I should have known better, when I went in to get both rx's filled they told me they were using a new compounding pharamcy, I should have just sent the rx's to the compounding pharamcy myself, at least I know my skin can tolerate what they use.

Just a rant, waiting for my skin to calm down.

MG



Elival vaginal Sup ]]> Antidepressants (Elavil, etc.) Mothergoose http://www.ic-network.com/forum/showthread.php?t=74857 http://www.ic-network.com/forum/showthread.php?t=74856&goto=newpost Fri, 18 May 2012 21:42:54 GMT Is anyone in the Calgary AB area interested in starting a meetup/support group to get together for support and new local friendships?

I know I've thought about it over the last year but I am still daunted by trying to start it by myself. However, I'm sure that together we can help ourselves and others. :) ]]> Justaluckyguy http://www.ic-network.com/forum/showthread.php?t=74856 http://www.ic-network.com/forum/showthread.php?t=74855&goto=newpost Fri, 18 May 2012 21:38:30 GMT Is anyone in the Calgary AB area interested in starting a meetup/support group to get together for support and new local friendships?

I know I've thought about it over the last year but I am still daunted by trying to start it by myself. ]]> Alberta Justaluckyguy http://www.ic-network.com/forum/showthread.php?t=74855 http://www.ic-network.com/forum/showthread.php?t=74854&goto=newpost Fri, 18 May 2012 21:14:58 GMT I know this sounds a bit weird but I was wondering if anybody had any thoughts about what happened to me yesterday. My IC has been pretty good lately minimal symptoms. Yesterday I had to go have a small op procedure to have a couple of moles removed. I was given local freezing at 2... I know this sounds a bit weird but I was wondering if anybody had any thoughts about what happened to me yesterday.

My IC has been pretty good lately minimal symptoms.

Yesterday I had to go have a small op procedure to have a couple of moles removed.

I was given local freezing at 2 different parts of my body where I was having each mole removed. I was not nervous, my husband was with me and I am really comfortable with my Dr. I have had lots of moles removed previously so I knew what to expect.

All went smoothly, after wards he said one may hurt for a few days, which so far it hasn't.

The strange thing is about 2 hours later all of a sudden my bladder went into big time spasams. They were so bad I was doubled over in pain crying. I have found in the past if something like this has happened I take a couple of Ativan and the spasams stop, which is what happened, but I am wondering what could have all of a sudden caused this, just so that maybe I can prevent it from happening again.

I would assume it was from the local freezing but I have had it so many times with root canals, mole removels etc that I don't think it was that.

And I wasn't stressed at all.

Anyone got any ideas what might have happend?

Thanks MG ]]> Symptoms of IC Mothergoose http://www.ic-network.com/forum/showthread.php?t=74854 http://www.ic-network.com/forum/showthread.php?t=74853&goto=newpost Fri, 18 May 2012 19:41:53 GMT I went in yesterday preparing to do battle with my rude PT. BUT,I found out it was my last visit with her. YAY! THe office manager called me in and apologized for Amber's rudness. BUT,she did my last office treatment and said that my pelvic muscles are slowly relaxing. She said there was no need to come back to my PT,just my dr,if the pain gets bad again. She said there were shots in trigger points he could put in to help a little. She thinks my home treatments are helping a lot. She herself is a PT and said she DOES want to see me in 3 months,sooner if the pain gets as bad as it was. I still have sacral back pain but my muscles will take more time to relax where I will feel no pain.
Apparently Amber did a good job on my treatments but I always felt so tense around her. She's a rude angry person and that could not be helping my muscles to relax if I was tense around her.
So,I have decided to stay with my nice urogyn. He also apologized to me for Amber's rudeness and said he will again talk to her. I will have to be rechecked in the future but they promised it wuld not be this PT. I gave her a chance and she even apologized then got mad at me again at the next session. I guess she just has issues.
I really feel a lot better! Still some pain but not like I used to have! YAY! ]]> Pelvic Floor Therapies JanieBA http://www.ic-network.com/forum/showthread.php?t=74853 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