View Full Version : Can anyone help?? I think I need someone to talk to.
10-15-2004, 04:38 PM
I only just found this site tonite. I have been trying to cope with a diagnosis of IC for 3 or so years now. I am male which I understand to be somewhat less common for this condition. I have had a terrible time trying to make sense of what is happening to me. All my friends have tried to help and I think that this is what has helped me to get this far. It is hard to talk to anyone though. They seem to be unable to grasp what it is like for me. I hate the way it sounds to say that. I have been very lucky in that I have some very special friends who have done so very much to help me cope. I still feel so alone though. Trying to tell someone who has never even heard of this what it is like just doesn't seem to convey it. It would be nice to be able to talk to someone that I don't have to try to explain it to.
10-15-2004, 05:27 PM
:welcome: to the IC Network. You have definitely found some people with whom you can communicate. There are even some men with IC who post fairly regularly here. Even though most of those here are women, we do understand what you are going through.
Have you found the Patient Handbook? It's at http://www.ic-network.com/handbook --- it contains some excellent information about the various treatment options for IC, including the IC Diet.
Sending warm welcoming hugs,
10-15-2004, 05:30 PM
Hi Shypup, you have found a great place. Lots of wisdom, lots of people who don't mind talking about this crazy condition we have. (I know what you mean, no one wants to talk about this over the dinner table ;) )
Ask all the questions you need..............no need to be shy here..........
10-15-2004, 05:37 PM
Hey welcome to the message boards. I'm glad you found us. Everyone here has IC and we all understand what your going through. Also there are some other males on the message boards as well. I hope that you find the help you need here. I was just diagnosed with IC about a mo. and a half ago. I believe that I've lived with it for the past 7 years though. Chelsey
10-15-2004, 05:54 PM
Hi :welcome: to the ICN! I am very glad you found us! You don't have to feel alone anymore. Donna is very right when she says there are some men that post regularly here. Anyway, feel free to contact me any time. I hope you have success with your treatment and stay in touch with us! ((((big hugs))))
IC is still not well known in general, so I often feel like I'm educating people who really can't understand what this is like. It is very important to have folks who are walking the same path you are as a resource for information and open discussion. You have found a place where you can let your hair down, so to speak, and talk about it, how it really is, without fear of being misunderstood, avoided or having to sugar coat the problems. This is also a very friendly, supportive group of people with lots of helpful ideas to share. And the best part is, you don't have to leave your home to get a friendly ear to hear and care about the problems you have.
:welcome: I haven't been here very long myself, but already I've learned a lot. Glad you found us!!
10-15-2004, 11:21 PM
I'm sorry you have IC, but welcome to the boards! This is a great group to ask questions of, get support from, etc.!
tired of this
10-16-2004, 02:11 AM
Glad you found this site as it has helped me tremendously. I am a guy too, and will try to help in any way possible. I was mis-diagnosed as having prostatitis for many years (10) until I had the cysto with hydro. My uro said that on a 1-10 scale, I am at a 5.
The diet that you can get through this site was tipped off to me by Katrina, and it has helped alot. Give the diet a try if you haven't, and give it some time to work. It took about 3 weeks before I saw improvement.
After the cysto and hydro, I began to feel better, then worse. But fortunately, Elmiron has started to kick in and make my life easier. I actually went to a football game again and only had to use the bathroom twice in the entire game. What a relief to be able to do normal things again!
I don't know what problems you are having, or what your doctor is doing for you, but I will try to help in any way that I can.
This site will help you!!
10-16-2004, 02:24 AM
Hi there, welcome to the boards. I'm only a newbie (just diagnosed) and I can say that you have come to the right place for support. Everyone is here is so great and willing to answer any questions that you have. So sorry that you have to be going through this.. it can be very difficult but these boards really help.
10-16-2004, 04:29 AM
Thank you all for your warm welcome. It is good to know that there are people who can understand from experience. I wasn't sure how much I should say in my first post. Here's a little more of my story.
Since about 13 or 14 I had had pelvic pain that no one could explain. It was moderate mostly and well within my limit for pain tolerance. No one thought much of it then. I got frustrated with tests not telling anything and quit complaining. I got more or less used to this without anyone to tell me that it was unusual. So I peed alot and I hurt pretty regularly, if it was anything to be worried about someone would have told me. I was pretty naive then I still didn't realize that doctors didn't know it all. So I just lived with it. I managed to do alright for myself in life. My doc says now that most likely I had a mild stage case for at least as long as I can recall pain.
Several years ago, 3 or 4 I would say now, I started to have increasing pain that not only manifest in my bladder but in my genitals also. It was a rude shock. I went to see my PCF and he said that he thought it was Epididamitis which is an inflammation of the outer lining of the testicles. He gave me antibiotics and a little pain medicine and sent me on my way. The antibiotics didn't help much. I was in so much pain that I would collapse in my delivery truck in tears. When it got to the point that I just couldn't stand up I went to the hospital. They ran several tests and couldn't find anything wrong. I got sent to a Urological center here in town. No one had told me anything about what it might be. They only told me what they had ruled out. They sent me to see one doc there but I ended up seeing someone else. I now know that the ER doc that sent me thought she might know what was wrong and was referring me to a specialist who handles IC cases and similar conditions. I took an appointment with the first available doc in the clinic not knowing any better. When they gave me that pre visis questionaire, I was comlpletely honest. I mean, parts of me that aren't ever supposed to hurt were in agony. One of the things I admitted to was trying controlled substances in the past. I as a patient knew only that I was spending my days in a ball on my bed crying in pain. I had no way to know what might or might not help them help me. It seemed to me that to hold back anything might mean that they can't figure out what's wrong. I am a big guy with long hair, tattoos, and piercings. I talk to the doc and tell him what's going on. He tells me directly after a few tests that an internal infection is all that is wrong. He said that I simply couldn't be in the kind of pain I was saying I was in. He told me he thought I was just saying I was in a lot of pain to try to get pills. I got really mad. I pointed out to him what I said earlier here about not being the one who knew what would help them find and fix the problem. I more or less told him off. He sent me home with more antibiotics and told me to take ibuprofen or tylenol for "the pain". I stopped short of telling him where to go and what he might do to himself when he got there but not by much.
So I go back home to my crying ball with no new info and the beginnings of real despair. Several of my friends were helping as much as they could, keeping me at their houses, coming by to take me to the doctor, that sort of thing. Without them I wouldn't have made it.
One night a friend came over when I was having a bad spell. ( I tried to keep those to myself. I didn't want to hear more people telling me I was trying to play it up. ) She asked me if I was like this alot. When I told her I was she helped me to her car and drove me back to the ER.
Knowing that I had been seen for this problem by a Uro office, the on call from that center was called in. I got lucky and didn't know it. The on call was the specialist I had been referred to in the first place. He did a couple of tests and told me he had found the afore mentioned infection and was going to treat me for that. He also said he believed me about the pain and was going to try to help me get it under control. I was admitted to the hospital and treated for my infection. When I came out I was switched from my previous doc to him. For the next couple of months he worked with me to try to find what was wrong. When he asked how far back I could remember pain like I was having now. When I told him I thought about 13 or so he started running different tests. One was a cystoscopy. Then I got the one phrase you never want to hear from a doc. "Well Austin, I have good news and I have bad news. The good news is I think I finally can tell you what is wrong with you. The bad news is that they don't know how to cure this. We have some things that can help, but that is all we can do for now."
He got me into a high dose study for Elmiron and gave me some pain meds to help me through the hard parts. The Elmiron helped to the point that I could at least stand up and walk. It was so hard to get up every day knowing that I was going to have to hurt today just like yesterday. I mean here I was not even 30 and had worked hard to keep my body in pretty good shape. Now I couldn't even count on my body working like it was supposed to. When the study was over, the doc continued me on the Elmiron at the same dose (900mg/day). It kind of freaked out the pharmicist who filled it. He actually called the doctors office to ask if he was reading it right. I worked with the doc to lower the dose and find out what was the minimum I could take and still mantain the benefit of it. That got the dose down, but still left me with a good deal of pain. I got lucky at work. I work for a delivery company here where I live. After telling them what was going on and what it meant for me physically, they started looking for a job for me in the office that I could do and not lose money coming off of my route. It took 2 years but I am now in the office and no longer have to try to run a highly physical job. I still have a lot of pain but my doc is continuing to work with me to try to control it. I am now on Elavil as well as the Elmiron and Lorcet 10/650 for pain as needed.
You know, if you had told me when I was younger that I would come to hate that loopy feeling that you get when the doc puts you on pain pills, I would have laughed. Now, I can't hardly stand to take them. It's like a slap in the face. I am married now, and my wife tries to be understanding. She was too helpful at first. I still have pain sometimes that doubles me over. She would always freak out whenever it happened;running around asking what to do. I finally had to tell her to just try to be calm and it would pass. She is better at that now. To tell the truth I am also better at hiding the bad times, too.
I got tired of everybody either treating me like I was some cripple or acting like I was just faking for attention.
THIS IS ALL SO FRUSTRATING! I want to go to a movie without having to dehydrate myself first just to enjoy it. I want to run with my dog without knowing that if I push too hard I am going to be in agony. I want to look at my wife and not think how much I would like to make love if only it didn't hurt.
I am just so tired of having to go through this every day and know that unless I get lucky they won't ever be able to cure me.
When I first got diagnosed, I went through a long hard time of wondering whether I should just give up. Lately I have had so many more bad days than good that I wonder if I made the right choice. It sounds terrible but there it is. I sat here last night when I was reading people's stories and cried. It is so nice to know that whatever else comes, I don't have to be alone in this any more.
Thank you all.
I went through a time thinking I would be better off dead, though in fact, I won't do anything to hurt myself. I know first hand the agony a family is in when someone of them commits suicide. I won't do that to my family, unless it gets to a point of absolutely no hope and no pain management options. And even then, I won't go without talking to my family. I just won't do what my mother did to our family, even though I now understand what drove her to suicide. Still, I do know what you are going through.
The good news is that most of us do eventually find treatments that let us live our lives in relative comfort. I do now have more good days than bad. I consider myself very, very lucky. In all likelihood, you will get there too, though it may be a long road to that state of health. This community will be here for you for as long as you need us.
I hope your journey to wellness is a short one. There are so many options now that those who have walked this road in the past did not have. One of them will eventually help you reach a place of relative comfort and possibly remission.
10-16-2004, 08:53 AM
:hi: :welcome: Glad you found us... (((hugs))).. You sure came to the right place for support, comfort and knowledge on IC.. YOu will find a wealth of info in here.. and never ending support.... We all know how you feel, and what you have gone thru and what you are explaining... IC sure dose suck!!! I use to work 2 jobs, and you had to glue my feet to the floor to stay still.... now I am a house wife who hurts to clean the house... Thank goodness there is cable, internet and the telephone.... thanks for sharing your story...
10-16-2004, 09:24 AM
There are so many things in your story that happened to me also. Well, after being at this site for a while, I know it's happened to many of us. I completely gave up on doctors for about twenty years, and "just lived with it". To be honest, I decided they were all hopelessly incompetent! Later, I came up with the thought maybe they weren't, and I had some 'type' of infection that their tests couldn't pick up. Either way, I felt totally abandoned. My pain and 'lack of a life' didn't seem to be taken seriously by so many health professionals (not to mention some family & friends), that I pretty well accepted this was how it was going to be for me from now on. What a terrible feeling!
But I want you to know that I'm no longer that person. I found a doctor who knows I'm not crazy and is familiar with IC. Even more, I know I'm not crazy! And between meds & diet changes, I'm feeling better and doing so many of the things I'd given up on ever doing again. I hope you find the same. -Don't give up hope!
10-16-2004, 10:54 AM
Welcome..we all understand how you feel...I am also on Elmiron, for 4 months now..I am taking 4 pills a day and I was getting twice weekly instills for 2 months...hang in there ...Elmiron has been my miracle and believe me, I was more than ready for one...I also take 1 - 10mg Nortriptilyne at 7 each night..the constant pressure is almost gone.. :)
tired of this
10-16-2004, 01:48 PM
You've been through the wringer for sure. So much of your story sounds familiar, as I was first diagnosed with Epid. pain too. But we live and learn. Hang in there, because you can start to feel better hopefully with the Elmiron, diet, and Elavil.
I have found that Saw Palmetto has helped my pain, even though my prostate is fine. You may want to try that too.
I bet our symptoms are fairly similar, and maybe our "fixes" will be as well. This site has been great for me, and everyone is willing to help you. If you want to blow off steam, or whatever, someone listens.
PM me if you want to. Good luck and hang in there from "one of the guys".
Hi and wanted to add my welcome to you, as the gals have said, this is a great place for support, compassion, and we all know, what dealing with IC, and the pain is like, in our daily lives. I am glad you finally got a diagnosis, I know what it is like to keep going to doc after doc, as I had to do the same thing, meanwhile you are still in pain. It does take time to find the right combination of treatments, and meds to help out, and life does eventually get better with more good days than bad. Meanwhile, we are all here to lend you as much support, information and anything else that is needed to help you deal with IC, which is definitely a pain in the :toilet: :yikes: So glad you found us, and a welcome hug to you, Iris. :hi: :welcome: :grouphug: :flower:
10-19-2004, 02:04 PM
Thank you all again for the welcome. It is very nice to know that I am no longer alone.
10-19-2004, 03:09 PM
I was diagnosed in August. I hurt quite a bit before I was diagnosted, doctor was treating me with antibiotics for prostititis. I've been taking Elmiron, Elavil, and Vistaril. I think the Elavil started helping me fairly soon. How long have you been taking it?
10-20-2004, 01:46 PM
I have been on Elavil for something like 8 or 9 months now. My sense of time is a bit off so I can only get as close as that. I have had some days since starting the Elavil that I did not hurt at all. Unfortunately not many but it has seemed to help.
10-20-2004, 05:24 PM
Hi Shypup! I want to add my warm welcome to the ICN. I appologize it's taken me a few days to respond to your original post. It's been a busy week and I'm still trying to play catch up.
I read your story - it was a hard one to read. I feel rather lucky that I did not go through as much agony as you have to get diagnosed. I also can relate to what you have said. I think I've been in pain far longer then I cared to recognize. I think after a while I got used to it and just thought the pain was normal. I also think I went through a period of time where I thought I was losing my mind and this whole thing had to be in my head. I'm doing well now with the meds that I am on. It's hard sometimes, but I get through it. Overall, I'm just not the same person I used to be. I'm tired all the time and am consciously aware of my bladder. It was a really hard adjustment for me to realize that I would never be that same person I used to be. My new "normal" is good - but still not the way it used to be.
I have found this board to be a great support. I am a firm believer in support networks and think this is the best thing I have done for myself by being a part of this group. There are a ton of remarkable people here who make sure I know I'm not alone. Please feel free to post anytime, ask as many questions as you need, and share as much as you like. We will never know exactly how it is for you, but we definitely know what it's like to live with IC. Thanks for sharing a big part of you with us.
10-21-2004, 01:30 AM
Sorry to hear, but glad you finally have some answers ~We care here.
I wanted to add my welcome. I am glad you found us. I know most of us feel this site is a real help to us. It sounds like you have a good Dr. now and hopefully as time goes by he can get you some more relief. I know there are times in my life that my IC is worse. Many times it has to do with the stress in my life. I hope you are doing better soon.
10-21-2004, 06:38 PM
Thanks for sharing your story with us all. As you said it's so nice being able to talk with people that you don't have to explain everything to, it's so hard to descibe this to everyone, so it's great just to have someone understands what you are going through. Come to these boards as often as you like, this place has been my saviour.
10-22-2004, 08:01 PM
Welcome to the ICN!! As you see, this is a wonderful caring bunch of folks. We all can relate to your IC story and understand that you are in pain. When those around me were trying to understand the pain I was in, I would tell the females..imagine a bladder infection 24/7 with no relief...and the males...imagine a very large kidney stone that will not pass. Those near to you will start to understand.
I can truly relate to not being able to stand or collapsing from the pain...the same happened to me...it took the final 2 years of teaching like that...with under 3 hours of interrupted sleep a night before I finally took a break to take care of myself...there were no options. Either teach full time for the school year or don't come back...It still hurts to think that I've lost my profession in the classroom...those middle school kids were my heart.
Sounds like the hearts of your wife and those around you are full of understanding and love, even though they cannot fully 'get' what you go thru' trying to work every day with IC. I know that you will keep working with your doc, using the IC diet, and taking good care of yourself. We are here for you. :hi:
10-23-2004, 02:32 PM
I know what it feels like to have so many people in your life who do care, but don't truly understand. On one hand, I want their support, love, and empathy. On the other hand, I want to be strong and independent. I don't feel that anyone in my life truly understands how difficult this is. I don't have severe pain as you do, but I feel at times that all I think about is the next time I can urinate and how I wish I didn't have to think about it. I have only been on this website for about a week, but there is a lot of support here. Thank you for sharing your story.
05-11-2005, 04:38 AM
I would feel so damn alone in this nightmare if I had not found this site. As a matter of fact the site is what led to my relatively early diagnosis (the fact that I have an amazing GP is also a godsend...when I told her the history of the bladder situation she immediatly reffered me to a uro who in two visits confirmed what I feared.
I log on all the time and probably annoy old timers with multiple babbling posts. Some times I'm up (times of minimal pain and sometimes I'm down
with pain bad enough to wonder where I can my hands on some good pain drugs...legal or otherwise.
I feel like a manic depressive skitzo most of the time.
I wish there was a crosseyed icon...suit me perfectly
05-11-2005, 12:30 PM
I'm new here myself and I can honestly say I have had the same thoughts. What kept me going was my daughter. I wanted to know what was wrong with me just incase my daughter would someday have this. I'm sure my mother had this illness because I can remeber her always in pain and going to the bathroom alot, enough for me to wonder why she was always in there, thought she move in. :) Then along comes my grandson another reason to stick it out. I prayed and made a deal with my Creator. (I will hang around till my Grandson is 30yrs old and he has to come for me.) That 28yrs from now. Makes life worth living.
I use to weight lift 5days a week. Took them Diet Pills With Ephedra and when I ran out I would start to feel better. Going back on them started the symtoms again and I couldn't believe they were the cause. I can honestly say now that this was the start of my IC and one day it just didn't go away. I've tried other diet pills and still have the same affects. Now I must battle the buldge solo. haha.
I was put on Zoloft 100mg to help my depression and it works for me. I'm just starting to experiment on what to eat and what not to eat. I'm still fighting the coffey issue!! CAN'T BE!!
05-11-2005, 04:47 PM
Hi and welcome to the forums SadPup,
Even though I am one of the newly diagnosed IC'ers here, I can VERY HIGHLY recommend this board as a haven from the stress of the ouside world.
I have found this board FILLED TO THE BRIM with generous and empathetic and very understanding members that are always willing to help.
This website, It's community and the IC Support Network here has been and still is a life preserver for me. Honestl SadPup;
I come here daily now, at least an hour each day; if its only for moral support or just to read and I have never failed to leave with a smile.
Just the act of being able to share & vent or even sharing a good ole faskioned whine with someone that REALLY understands my concerns and knows what it is like, from an insiders point of view.
Oh, and you dont want to miss the other pages on this website while your here SadPup in all seriousness, It has been 3+ weeks since my official diagnosis of CIC and I am surprised, Gladly So, to be still finding new medical updates in here that I havent seen and all kinds of other interesting articles and postings here.
(its a great place to come online to on a rainy day )
It find it really helps me in keeping MY mind occupied and off morbid worrywart thoughts on bad days too,
Ive learned a lot about myself these past few weeks and lessons are always appreciated, All in all, my time here at the IC Network has been priceless and nothing but rewarding.
After reading your story I turned to my husband and told him that your story sounded JUST LIKE a great deal of us here and I have just this moment realized that I just jumpedto this conclusion that because you were a man that somehow you needed a man only to talk with you, I incorretly imagined that your symtoms would affect you differently than a women, Please accept my apology for being my so narrow-minded.
That was unfair of me.
I feel bad for anyone with IC that has to spend even one day feeling lonely or frustrated with no medical assisance; and in so much physical and emotional pain!
Your friend was a good person to help you find answers to your ailments.
Well ok....Ive babbled on for long enough,( I had my meds about 15 mins ago and Im going fuzzy now, You get the jist of what Im saying here, right?!
I hope you will come back to visit again often.
Im certain you will find new friends here and a community that makes your emotional well being a priority and somehow the little things like having someone listening make IC a little easier to bear.
"It is very nice to meet you, SadPup." Please DO come in and rest a while!
Your among friends now.
Have a wonderful and hopefully pain free evening all!
05-11-2005, 05:00 PM
I am sooo sorry to hear that you are feeling alone. I was recently diagnosed and this site has been a godsend to me. I am hoping that you are able to find the same kind of help. I have gotten a lot of advice from the members here. The best thing is that you will NOT have to explain anything because we all understand.
I hope you feel better soon.
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