Thread: hello, i am new, sad, and lost
10-24-2004, 09:08 AM #1
hello, i am new, sad, and lost
hello everyone ... i am new here, and have found this site and forum very helpful.
just to give a little background ... probably when i was 20 or 21, i had been experiencing frequency and urgency since this incident i had in the swimming pool (had to urinate, but i just needed to a cannonball, boy did that hurt). i had gone to this urologist who said i had overactive bladder, and i believed him, tried things like deterol and ditropan and they didn't work. i decided to just "deal" with it. over sometime, i would say i improved. i don't know how. i do know i avoided things like citirc acid and certain teas. i just knew what would make me need to pee a lot and what wouldn't. over some more time i was able to drink low acid orange juice as well as begin to eat foods i wasn't able to before (like certain tomatoe based dishes).
then, recently, after starting the school year (i am 23 now, and it's my senior year), i somehow aggrivated my bladder. it was sometime in september, and FL was having a lot of hurricaines and we kept evacuating our school. i was constipated (maybe this is what aggrivated it) and stressed. all i know is that i am urinating frequently and having urgency again and it is frustrating me (i use to not have to go during the night, and now i do, i use to be able to hold it comfortably, and now it's been difficult). i went to a urologist near the end of september, he said i might have interstitial cystitis, presribed me L-Arginine ... at this time i was near the end of my menstrual cycle, maybe that had something to do with it as well. after a few days of taking L-Arginine, i was starting to feel more "normal" again. i didn't have to urinate during the night, and was able to hold it comfortably. but then it started to act up again, around the time of my pre-menstrual cycle. i'm at the end of my menstrual cycle and am still experiencing frequency and urgency. i have no pain. though there have been times that i have had a strange pain around my urethral opening (i guess that's what it would be), kinda like a pinching pain. i'll be going back to the urologist soon, he had wanted me to try the L-Arginine for a month to see if it helps me or not. when i go back, he will be looking inside me, i guess this is called a cytoscopy (?). i was reading about how to diagnose IC, and it seems that the doctor should perform a hydrodistension (?) as well as a cytoscopy (?) ...
all i know is that i am afraid because i do not know what is happening with my body. i am healthy otherwise ... it is just this frequency and urgency. i am scared not knowing what this may be, scared because i am at school away from my family and fiance ... i have found support in this forum, but i am scared that maybe i don't have IC, and if i don't, what else could it be. i know that it is natural to be scared of the unknown, and i am grateful that i do not experience the pain that most on the site mention. any words of encouragement would be helpful, as well as anything that may inform me of what i might have. maybe one does not have to have paing to have IC ... what of PFD ... i just want to have my quality of life back; after working hard to just deal with it, and now it's gotten bad again ... i just feel so lost.
thank you for listening,
10-24-2004, 09:48 AM #2
Your thread title is heartbreaking. So many of us have been there - I'd venture to say all of us have been and it is a scary place.
Coming here will help you with that feeling. Being able to talk to others about your symptoms and your fears will help. I would encourage you to read from the ICN Patient Handbook www.ic-network.com/handbook - but don't overwhelm yourself. Sometimes reading here can be scary - lots of information and some sad stories.
Please know that IF you do have IC, there is still hope for you. Most of us with IC DO go on to find treatments that help us live normal lives. Honestly. Most people who are drawn to health related message boards are the people who are suffering and need answers. The people with those conditions who are feeling better don't need the support of message boards so they are not typically here. So, if you think you see more bad than good, remember that, OK?
I haven't had pain with my IC so it is possible to have it and have no pain. Keep working with your doctor to rule out other conditions. I am glad you are reading about the IC Diet - it can make a really, really big difference. Hormonal shifts can affect us, too, and that may be why you are noticing some differences around your period.
Take care, keep posting and never hesitate to ask a question or reach out. We are here for you.Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
10-24-2004, 10:28 AM #3
and to the ICN family. I understand you being scared we was all scared at one time please check out the website VM gave you its very helpful also the ic diet is there that can be a life saver.
Please keep us up todate on how you are remember you are not alone and we do care.
sending you hugs and prayers
RhondaMedicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
10-24-2004, 11:07 AM #4
- Join Date
- Oct 2004
- Seattle, WA
I know the fear, diagnosis does help. Once you have a solid diagnosis, you can begin to deal with all of this constructively. It is good to hear that you are not in real pain, a big plus in the quality of life arena. I would suspect that the stress you have been experiencing with the weather problems and getting evacuated are the reason this reoccured. While it could be something else, it certainly is consistent with the experiences of others who have IC.
The strange pain around the urethra is also familiar. I know what you mean, I get that too. For me, sitting on my ice bag really helps with that feeling and the frequency/urgency problem as well. And Uristat also helps me deal with it. As you explore the online handbook and these boards, you will find many suggestions to try out, as well as information about medicines that offer relief for it.
First thing I would try out is the diet included in the online handbook. It can offer you real relief while you work though all of this. Most of the medications are not instant solutions, though some work faster than others. But, the diet often gives relief within days.
What you are going through is a normal reaction to all of this. It is hard to be away from home and having to deal with something like IC all by yourself. There is a gold mine of information and advice here in the handbook and on the boards. It can be overwhelming in the beginning. But, we all care and will be happy to answer any and all questions, as best we can.
to the boards and this community! Glad you found us!
10-24-2004, 12:21 PM #5
trust me i know what you are going through. i was reading your story and i have the same exact story i swear haha im 16 though and was "sort of" diagnosed with ic maybe 2 weeks ago. I am still so confused and lost and miserable. i have missed so much school from this and can barely go out. im glad you have a good doctor though unlike me. i go to 3 urologists and it is so hard. just know that everyone here is going through the same thing. if all these peolpe can get through this so can you.
10-24-2004, 12:37 PM #6
hello bunnymoomoo and welcome, As you ca already tell you have found a terrific site that has so much support. I know I was glad to know that have IC for the simple reason that at least now I know what is wrong with me and can be on the proper medication. Good luck with your testing.
10-24-2004, 01:16 PM #7
thank you everyone ^_^ ... this site has helped me a lot, and i mean A LOT... the hardest thing is just not knowing and i want to arm myself with as much information before i see my uro again so that i know what the "right" course of action to take is... i keep saying "what if" ... what if it is IC, what if it isn't ... could it be this or that ... just trying to understand what is happening; make heads or tails of it all ... like, why was i "ok" for a long time and then all of a sudden i'm having frequency and urgency; had i experienced remission, is this a flare? so much to absorb, a lot of information to try and understand, and everything is so overwhelming.
i've probably been on this site for hours, it's the only thing that helps calm me down and keep me from crying and having some sort of anxiety attack. i'm so grateful for this site, even though i'm not sure what i have yet, this site prepares me and makes me feel a whole lot better by keeping me informed. not to mention, everyone here is so understanding! i think the best thing of all is not feeling like i'm "alone" when i'm on this site.
thank you, bunnymoomoo
10-24-2004, 02:00 PM #8
Welcome Bunnymoomoo!! :thumbsup:
I am glad to hear that you at least know what IC is and that ther is a chance you may have it. So many people go undiagnosed for years because they never hear about it. So, at least you know to ask about it. I didn't know until about a year of searching for the problem. Anyways, I think I can speak for everyone when I say that we are proud that you have this place to come to and talk to us to get away from the stress of the day. I come here alot too. I want to absorb all the info I can about IC. Also, it is so nice to be able to talk to people that understand!! So, good luck and keep posting, we're here to help!!
10-24-2004, 08:49 PM #9
- Join Date
- Oct 2004
I just wanted to show my support for Bunnymoomoo (I'm her fiance! ) ... Everything will be okay!
10-25-2004, 01:44 AM #10
to the ICN! I'm glad you found us. I'm glad you are reading the Patient Handbook and trying to learn all you can about IC -- information is power, and it can really help you deal with your doctors better. Remember, it's your body, so you have the right to know exactly what any doctor wants to put in it!!
I know that the time just before diagnosis is scary and filled with what-ifs -- I've been there. Just want you to know that even if you do end up with IC, there are many many treatments out there for you to try, and one or a combination of them will almost certainly help you. Most IC patients find relief from their treatments and are out there living active lives!
Take care of yourself****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
10-25-2004, 03:38 AM #11
- Join Date
- Oct 2004
- Tuscola, Illinois
Hi. I was just reading your post and wanted to drop you a quick line. I was just officially diagnosed with IC last Fri. The dr. did this by performing a cystoscopy in his office. I opted not to have the one with hydrstintion. (sp) I wanted to tell you that the cystoscopy was extremely painful. My dr. said it would be no big deal, a minor discomfort and I nearly passed out on the table. I don't want to scare you, but I want you to be prepared. He did fill my bladder some during this procedure and that was what was so painful. I am still in pain today. (more than normal) I think I have a very high pain tolerance, but this was more than I could handle. Sorry it I scared you, but I would have done better if I walked in the office knowing what to expect.
10-25-2004, 04:06 AM #12
I don't have anything to add, but would like to say "welcome."
And that I agree that the time before diagnosis can be the worst time of all. Once you find out exactly what it is that you are dealing with, it does get easier.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
10-25-2004, 07:35 AM #13
dr. appt tomorrow, nervous
well, initially my Dr. appt. for a cystoscopy was Nov 5, but i was able to get in tomorrow @ 10 AM ... for that i am relieved and hope to find answers sooner then later.
i think the hard part right now is collecting my thoughts and what i concerns i have to talk with him about. i'm just plain scared; after learning so much about IC, and the various treatments, what if it turns out to be something else... or what if it's a combination of things (maybe making it more difficult to diagnose exactly what's wrong and how to treat)...
i think my main symptom at the moment is frequency, a little bit of urgency ... the feeling that i need to go even though i just went ... and i wouldn't say it's difficult to get my stream started, but it does take a few seconds. i've only been going like once maybe twice during the night, but during the day, i just feel like i need to pee. also i have some strange feelings in my inner thigh, kinda hard to describe, not soarness, maybe a tingling sensation. no pain, thank goodness. do these symptoms sound familiar ... T_T wahh
my Dr. did tell me that the cystoscopy isn't painful, but hmmmm ... i really hope it's not, it's hard enuff trying to get through the day worrying about what i may have.
again, thanks for the support everyone, i really appreciate it!
10-25-2004, 09:16 AM #14
- Join Date
- Oct 2004
- Seattle, WA
Is it IC?
Hello everyone. Over the past 6 mos I thought I was suffering from bladder infections. So 2 weeks ago I went to see my dr for yet another bladder infection and when the test came back negative she did some research and found that my cultures on my last 5 visits were negative. I was put on antibiotics each time I went in. My Dr did another urine test that once again came back negative. So they scheduled me an appt for November 10th to do a cystoscopy. They warned me that it is not a pleasant experience. I don't do well with pain and am worried about the procedure. They told me that if I do have IC they will then want to schedule an appt to stretch my bladder. I have read on the message boards that many people were in lots of pain after the procedure. I guess I am a little worried about both procedures. After they stretch my bladder do I need to stay on the medication? I am currently taking Flavoxate and it is working better than the detrol I was on for 10 days. I just want to be able to do normal things again. I commute to work (an hour 1 way) and lately I need to stop at least once to pee! Some days are worse than others. I haven't been sleeping well either. I wake up every hour to pee! This is while I am on the medication. It was about every 30 min when I wasn't on any medication! I have the frequency and the urgency. And it seems to be worse for me if I am standing still for a few minutes... not sure why!
My Dr. is hoping that it is just a bladder and kidney infection but she is fairly sure that it is IC. I am stressed and not sure what to expect.
10-25-2004, 11:06 AM #15
- Join Date
- Oct 2004
- Seattle, WA
Jen123!! Glad you are here. Hopefully, you will learn a lot by reading the boards and the online patient handbook.
As to the pain, it is so individual, but I would go prepared for some pain. I usually tell my doctors right up front that I am not good with pain and we both might be happier if I am sedated. When they went to look inside my bladder, they did put some topical anesthetics in my urethra before they put in the catheter. It still hurt. I found it very unpleasant. Even now, insertion of the catheter always hurts some, no longer a major pain, but still, it does hurt. I accept it as a part of getting treatment that helps. One of the things I do to reduce the pain, is to relax all the pelvic muscles as much as I can. I also try to relax the rest of my body and breath normally. It does help.
You should discuss with your doctor what medications you should be on. I can't recall seeing anything to suggest that stretching the bladder was a cure for IC, so I would guess that some medication appropriate for you and the state of your IC will be prescribed.
Again, welcome to the boards and our community! We have all been through this and can understand what you are experiencing. We will all do our best to be helpful. But more than that, this is one of the most caring communities I've ever seen online. Feel free to ask any questions or rant or cry, we will be here and understand.
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