View Full Version : re: feeling alone
01-23-2004, 07:29 PM
WEll.. hi all.. I am new here and just signed up. I am tired of sharing my feelings about my IC w/ friends and family theya re tired of hearing about it. I would be too i guess, but i need people around that KNOW how i feel.. My boyfriend doesn't understand and thinks i am lazy when i sleep thru the day.. (even though i was up all night trying to feel comfortable) I don't even work right now. I don't see how i could. I am on antidepressents right now and nothing else. All the doctors i talk to out here in Athol, MA think i am crazy and say there is nothing wrong w/ me. I am 29 now and I have seen ER's and docs for years and i think only one of them had it right.. i probably have IC. I notice food makes me feel worse.. I get infections also at least 5 times a year.. I never know when it is just feelings or a real thing so i buy the test strips now so i don't waste my no-patience, new doc's time. I know this isn't in my head. I'm not a hypochondriac.. sometimes i am very good tho, and am still in pain.. I don't think i deserve that.. I don't eat anything fun at all anymore and have reduced my drinks to mainly bland water.. but i am stil in pain.. what is this hydro thing everyone is putting up posts about?.. does it hurt?.. a simple pap smear makes me cry.. Between the migraines and the ic, i am at my ropes end.. i just ordered prelief.. will this stuff really help me?..anyone wanna talk, please.. email me or something! I go to chat rooms all the time, but there is never anyone in there when i am in pain..lol It's morning now, so i better try to sleep, I find a pillow between my legs sometiems relieves my pressure.,, or at least tricks my brain into thinking at least there is a reason for the pressure so it makes it a little better.. i don't know.. sorry this is so long.. i willl check back here soon.. Love all your stories, good and bad. Good luck to all going thru this.. :)
01-23-2004, 11:17 PM
Welcome to the IC Network. You hve found a place where we do understand.
Have you seen a urologist? If not, I suggest you do --- and if you have --- I suggest you see a different one. This is not in your head and never was.
In our Patient Handbook you will find information about symptoms and diagnosis, including hydrodistention. You'll find it at http://www.ic-network.com./handbook
Also, you'll find a list of physicians if you go to the Browse Our Site pull-down menu and follow the links.
Sending an encouraging hug,
Welcome! hi First impression after reading your post: get a new doc!!!!!!!! lmao Seriously, we have some other ladies here from MA who see really good doctors who will affirm that it is NOT in your head and will do far more for you than just antidepressants. hopefully one of them will come along and tell you about their docs.
Here is a link to info about the cystoscopy with hydrodistension:
I hope you'll stick around to enjoy the support you will find here. It's amazing and you won't have to feel alone anymore. kissing
01-23-2004, 11:20 PM
I wanted to welcome you to the boards!! :) I am not on here much because I work all the time now. There was time about 3 years ago that I had to quit my job, go to the pain clinic and have my heating pad attached to me at ALL times!! I have a great uro and we found stuff that works for me EVENTUALLY!!
I am sorry you are feeling so bad. I wish you could find a good uro that knows about IC so they could work out a treatment plan that is right for you. There are plenty of options out there. I know you have seen from reading on the boards that the same thing doesn't help everyone unfortunately :confused:
I am one that hydros help ALOT!! That is where they put you to sleep and fill your bladder with water and overdistend it and stretch it out. The first one hurt me because they took a biopsy to rule out bladder cancer. I have had 3 now and they hurt less and help more with each one. :) I figure I will prob have to have one a year but I am fortunate that they work! My dr said that IC bladders scar inside and the hydro stretches it out and breaks all the scar tissue loose thus in some it helps with the pain.
Maybe someone on here lives in your area and can give you some names of a good uro. IF you can get one with your first try, you will be way ahead of the game.
01-24-2004, 12:10 AM
I am new here too and while I am not officially diagnosed with IC yet I have many of the symptoms and am seeing doctors trying to figure out what's going on. I'm so glad I found this board; it's is a WONDERFUL place... and I'm glad YOU found it too. Keep talking, everyone here totally understands what you are going through. And it is NOT in your head.
I wanted to reply to you too because I see you're from Athol... while I live in Memphis, TN now, I grew up right down the road from you in Gardner!!
Keep in touch, and keep warm-- I hear it is absolutely FREEZING up there lately!!!
I just wanted to add my welcome. I would also suggest a new Dr. When you find the right Dr. then you can get some treatment for whatever they find out is the problem. Hang in there and know that we are here for you.
01-24-2004, 01:09 AM
hi ~welcome~ you will find a wealth of info in the sight and there are a bunch of great people in here to talk to and to share there expereinces with.. keep posting
01-24-2004, 01:24 AM
Hello, and welcome to the boards. Your screen name tells alot about how you are feeling right now, and having a fractured soul must hurt on so many levels.It sounds to me like you need to find a doc in a bigger city who treats many patients w/ IC. There are many in the Boston area, Natic, and even down to the Springfield area. In fact, there is a support group next Saturday afternnon in the Boston area. I am not clear as to just where it is, but can find out for you, since I am planning toget to that meeting. Belieeve me, I share so many of your feelings. You are not alone, and the people here care about you.So Very glad you posted and hope to chat again soon. My email address is:email@example.com feel free to emil me any time. grouphug hi
01-24-2004, 02:33 AM
Welcome to the boards and know that you are not alone. As the others have said, it's important to find a good urologist in your area who can come up with a treatment plan that will allow you to live a much more comfortable and productive life. None of what you're experiencing is in your head; it's all very real. We know because we've all been there.
Read up as much as you can about IC and related pelvic pain disorders, ask us as many questions as you need to, and be proactive about getting compassionate, quality medical care from a urologist who is familiar with IC and the available treatment options. Good luck!
01-24-2004, 06:17 AM
HI and welcome to the boards. I livei n Medway, MA and have a great uro who Ihave found and is knoweablale in ic and is willing to treat patinets and not give on them. I fyou would like his name and number I will galdy give it to you, just pm me or email me, my email is at the bottom of the page. This is not in your head. You need to get tested or diagonsed. We are here for you. gentle hugs. grouphug grouphug
Hello, and welcome to the boards, I agree whole heartedly with all the gals messages, this is certainly all not in your head. I know how hard it is to get on the right meds or regimen to help you out, but it can be done in time. You will find lots of supportive people on the boards, and a whole lot of information on the network that can be of some help dealing with IC. Please keep in touch, and let us know how you are doing, and hope you can get some relief soon from your pain, welcoming hugs Iris. hi grouphug
01-24-2004, 11:10 AM
See you are definately NOT alone!! hi
01-24-2004, 12:07 PM
Welcome to the icn family.
You are not alone! please seek out a new uro. this isnt in your head and never has been sorry you are going threw a hard time right now but we are here for you we do understand and we will stick behind you.
01-24-2004, 05:36 PM
i am not on the comp Every dy.. but most of time. I will check in here as much as i can.. I finally got to talk to a few of you last night, you all seem so sweet and supportive. I thank heaven for people like you. Thank you all for the suggestions. I will continue to go to chats and read your boards and diet lists..=) As for doctors in my area.. there are few.. Since i have mass health too, my crappy insurance seems to love giving me crappy doctors.. i don't have a lot of dough so i often go to emergency rooms or junk docs.. i will have to take some of you up on your doc offers... I'm sure there are good docs in MA but i am just not meeting them..lol I have nothing against hindi doctors either but.. i seem to get ones that i can't understand and/or are very rough and brief w/ me.. This deters future visits for a while.. i ordered some prelief so that is on the way.. thankyou all and god bless talk soon =) Fracturedsoul @-(--
01-25-2004, 12:10 AM
You have come to a great site. There are a lot of us on here that know what you are going through. How i wish the internet would have been around in 1992 when i got the dreaded IC. There are a lot of things you can try to relieve your pain. I am currently taking elavil and it was a miracle for me.
01-25-2004, 12:30 AM
Welcome-fractured soul!! I too am new to the site,but not new to IC. I have been diagnosed x 2 yrs now. It took a journey thru 3 doc's till I found the 4 th one who didn't think it was in my head. Advice- you have come to the right spot educate yourself. My present doc tells me he loves to see me come b/c I help educate him. All uro's/gyno's are not well versed in IC so the more we as pt's know to ask the better our care will be. Hang in there you are surrounded by people that care right here! Hugs from snowy N.C.
01-26-2004, 02:19 AM
Welcome. hi You sound so sad! I'm sorry you have to go through this. You try to find a dr. that really cares about you. You don't deserve to be treated as a nousiance. Did I spell that right? Anyway, I hope you find relief soon. I had a hydro and it was fine. They knock you out for it so you don't know what's going on. When I woke up I did feel some pain and urgency but then I asked for something and whatever they gave me took the pain away immediately. It never really returned at the same level. It barely hurt when I peed. I'd say it was a pretty painless op. for me. They did give me percocet so I'm sure that helped. Maybe a week later I had some pain (a few painful episodes- but not worse than before the hydro) but then it didn't stay too long and I've since been in a remission. It's been like 3 months now without much pain. Every now and again I have mild pain but it's not like before. The drs. did tell me I have to get these things like every 6 months to a year, as the symptoms usually come back by then. So, I'll get it every 6 months to a year if I have to but hey, it's better than having constant pain. You should talk to someone about it. Call around to different drs. Good luck and take care. kissing
01-26-2004, 05:56 AM
I am relatively new here too. I have posted a lot because I have had so many questions, just like you will. I want to welcome you here as there are just so many wonderful, caring, down to earth people here that really listen and understand.
I had my days and nights mixed up for quite a while as well and it took me a long time to get in sync.
My diagnosis is still up in the air, but I have had kidney stones pass, an extreme E. Coli bladder infection that landed me in the hospital, and my doctor still telling me I might have IC. I am fortunate though, I have a great doctor and the best way to find one for yourself is word of mouth, looking up urologists in the phone book and ask the receptionist, or better yet, ask the doctor's nurse, if he treats IC and how many patients does he treat if any.
You have to be vigilant in this to find help. Nobody should be forced to live in pain and treated as you have been.
I also have fibromyalgia and chronic fatigue syndrome, along with a bunch of other stuff, and I literally had to doctor shop til I found a doctor who listened, believed me, and helped me out of horrendous pain. A LOT of doctors think us women are just depressed and a simple antidepressant will fix it all. I was sick and tired of being treated as a hysterical woman who's problems were all in her head. You have to take charge, right now, of your healthcare, and do not allow another doctor to treat you like that. If they act like they doubt your pain, then get up and leave, literally.
You've come to a great place I assure you, and ask ask ask questions, even if they seem silly to you.
You can also use the search feature above to see if you can find some posts relating to your particular needs, or just ask away.
Good luck to you, Sandy
01-26-2004, 06:06 AM
I will try to come to chat tonight to meet you I love the chat room and all the people there they are always there to make me feel better and offer some helpful advice and i try to do the same in return. wink they found my ic in june of 2001. and this site has been so helpful to me in alot of ways.
I also help with the low income board check it out it may help you find some means to a better doctor or if you have any question that isnt there please pm me or email me and i will do the best i can to help you out.
Everyone here is wonderful i'm glad you found the site we are a big family here and we try to help each other like a family should. grouphug
I truly understand by what you mean by those doctor you can't understand if you can't understand them how are you to get better :confused: where there is a will there is a way and one of these day someone will find a cure. blink
01-26-2004, 08:08 PM
wink I am astounded by all the replys.. I'm grateful for all your answers and advice.. Thank you auntiedeb for the natick info. I will look into that. I wasn't around today because i was too tired literally to get out of bed.. I have caught a cold or flu somehow (even though i haven't gone anywhere for a few days) and i am miserable and can't sleep.. hehe on top of Ic, right? But i feel a little better in the ic department today, just my nose and throat really bothering me.. :rolleyes: i tried to put up my story, hopefully i did it right.. That way i won't seem like some mysterious stranger.. =) Hope to talk to all soon again..I really thought i wouldn't find anyone to talk to that knew how i felt...I tried to explain it to my friends and family.. etc..But i finally realized they could only partially understand..and i had to find others to share my sorrows and hopes of ic w/. I was honestly hoping i would find it in the people closest to me..But that didn't happen and made me really isolated and depressed.. I have gone to a couple other chat rooms and boards where people answered me a month later or weren't even around.. And i can say i really feel comfortable here and it makes me cry to think i can share all these things to you people.. total strangers, who are threaded in a miraculous common bond and offer their acceptance and compassion therefore w/ out prejudice or sanity questioning.. more than my own flesh could do. I suppose i really couldn't understand aids or cancer to the ultimate unless i had it too.. but all i was looking for in docs and friends were.. "o.k..you have something real, awful, and crippling.. and I'm here for you, won't belittle your condition, and here is a way to get hope and help.." One of the most elusive sentences I have ever known it seems..Montel was on tonight on tv.. it made me cry.. Anyone see it..i never knew he was in so much pain too.. Well...Gracious this is long again..lol well.. many thanx FS @-(--
01-27-2004, 01:15 AM
I wanted to welcome you to the boards. Also, I know how you feel about family and friends as I'm sure alot of others here do too. The one thing I have learned in the last 3 years is that they can't possibly understand. People look at us and we look ok, you cannot see the illness in our bodies. We are sick on the inside and that is where it shows. We become emotional roller coasters and people dismiss it for PMS or just because we are crabby. They don't feel what we feel. They don't deal with the pain, running to the bathroom every 10 minutes, the feeling of utter helplessness because we ourselves can do nothing to make it go away. The best thing you can do for yourself is to learn everything you can about IC and pass it along to your Dr's. Trust me, there are more ICers that teach their Dr's how to treat them than the other way around! You have found a wonderful site with the most awesome, compassionate people there are on the net! We may not know each other personally, but we know what we deal with everyday and just how hard getting up in the morning can be. I hope everything works out and you find a new Uro that will treat you with the respect you deserve. There are ALOT of treatment options available, just finding a Dr knowledgeable in the field is the hard part. Once you do, I promise you will begin to feel so much better just having that weight from your shoulders.
01-27-2004, 02:48 PM
Welcome to the boards! hi I also know what it's like to not have family members understand what you're going through. Regarding urinary frequency I have heard things like, "You're thinking too much about it." I've also gotten into heated arguments with a certain family member about my food sensitivities that he was or perhaps still is reluctant to believe in. He thinks I'm being paranoid or something. eek Fortunately at work my supervisors and co-workers are understanding about my IC condition. On "good" days I urinate about once an hour, but usually I go about every 30 minutes to an hour.
I'd like to let you know that I am looking into natural treatments for IC since medical treatments failed me. I even had a complete hysterectomy six months ago hoping that would help relieve pressure from my bladder! Since I had fibroids and endometriosis, the doctor thought those conditions might have been causing the bladder trouble. But no, they aggravated it during ovulation and PMS, but they weren't the cause. There are some books about IC on Amazon.com. If I find anything that works well I'll let everyone on this site know! For now, Ibuprofen helps me with bladder pain/urgency. So does Prodium or Pyridium. Prelief tablets are helpful while eating anything acidic. Several tablets (6-8) can help prevent a negative reaction for me. Other than acids, spices, seasonings, and caffeine also wreck havoc on my bladder. Unfortunately Prelief doesn't help against those, just acids. Regarding vitamin supplements, I only take Ester C, which is a non-acidic form of Vitamin C.
Another thing I'd like to add is to not give up hope. I practically gave up hope after four years of trying to find a successful treatment and sacrificing my female organs. banghead Even though I haven't found a helpful treatment yet, reading the many posts of other patients here who haven't given up hope yet is inspiring me to not give up hope either.
Whenever you feel alone in your IC, just log onto this message board anytime! grouphug Here you'll find lots of supportive and understanding folks.
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