When hope is lost...

[Dreamlove15]

I'm sitting here up at 4am trying to tell myself that its all in my head. I'm trying to convince myself that maybe after yesterdays appointment at my uro that is what I need to believe. I mean sitting there and having someone look at you like your making the whole ordeal up is pretty devastating. I'm so numb right now and im sobbing. I'm only 23 years old and I never asked for this. I don't know why I can't find someone to believe in me and give me some kind of hope for the rest of my life. I guess that is just the way it is when you have no insurance. I go to a clinic that is pretty much for people without insurance, im on charity, I thought everything was going ok. But I guess I was wrong. The Dr's rotated and there were new ones. So I didn't get to see the one Dr' I saw last time, the one that gave me hope, the one that said they were going to try everything to help me. The one that almost cried inf ront of me..the one that said dont give up hope. I believed that day that everything was going to work itself out. That was last month. and this was completely different...

Yesterday was the worst day of my life, but I should have known it was coming. I should have known that people without insurance are looked at all the same. I'm nothing special to them I suppose...even my tears and my age seem to do nothing or atleast yesterday they didnt. So I will walk you through yesterday. I ssat and waited in the roomw ith my mom and sister for about an hour before the Dr. came in. He was someone I had never seen before. He looked really young, almost too young to be there. Maybe that was a sign, but the first thing he said was how did your last hydro go? I said it didnt go so well and it made me worse. I told him I got a horrible infection and landed in the hospital 2 weeks later, so i'd have to be pretty dang desperate to do another. He looked at me like I was nuts, but why would I want another if it it didnt help...I don't see th point in hurting myself more. Then he goes on to tell me that i've exhausted ALL the treatments for IC. Hear this, hydro,elmiron and atarax. I was like are you kidding me? wow, i'd like to see what he says when he reads this board. So he then goes on to say well the next option is for them to take my bladder out? Right then and there I was like thinking he was completely insane. I mean I haven't tried any instills or meds. extreme measures..I told him that the last Dr. mentioned the interstim and he said "well your charity doesn't cover that?" I was like oh well, I wouldnt want it anyway it doesn't help the pain. He kept rolling his eyes. I told him that I read about IC all the time, and that i'm willing to try instills. He says well we DON'T BELIEVE IN THOSE, and that I wouldn't be covered for those, "the meds are expensive you know." I was so ready to just leave...This guy was so uninformed. He also told me that the IC diet is not one he believes in. He then tries to tell me, just like the last idiot I saw for my post op, maybe its "female problems," once again another challenging their own clinics diagnosis. So he says to me, "maybe you just have a chronic pain disease and it's not in your bladder". Ugh, I got so mad, and said, "Umm the Dr's in this clinic diagnosed me IC and told me that I had all the classic signs of IC." he then tries to say that the hydro can make normal bladders look like IC. By this time I was ready to smack the guy, he had no clue what the heck he was talking about. I told him," so your saying that my urethral pain is really my arm hurting?" By then he knew I was angry. So I asked he what am I suppose to do? Just tell myself this is all in my head? He says that he wants me to go to my gyno appt on the 17th and a full work up. And that maybe I have endometriosis. Riiight. I tried to explain to him that i've been through this all before. This is how I got to the dang Uro clinic in the first place. Testing of exclusion. I;ve already have the transvaginal ulrasound, pap smears...but I think this was there way of saying, " We can't help you anymore." So I made one last request, i said i'm almost out of my pain medication. He says ,"we don't prescribe those" I looked at him and said, "Umm i've been getting them since Nov." He says well we don't think they help IC. Oh wow, I was hoping he wasn't going to say that. I said what in the world am I suppose to do when i'm on the floor or in bed allday because my bladder is killing me?" He said well that is why they sent you to pain management. I said um well I called and they said that you guys should have known that they dont see "bladder pain." He just shakes his shoulders and says well I guess thats the case. And doesn't say anything else. He says that he can give me "a couple" but that is all. He looked at me like I was some kind of drug seeker. Oh my, thats a new one. If only he knew how much I hated pills. But had to con myself into taking them because the pain is so excruciating. So he left the room for a few and comes back. He hands me a script for 25 Loritab and says to "keep doing what i'm doing and HANG IN THERE" Wow, hang in there...I didnt say anything, I just left. I was told to come back in 3 months...im thinking maybe never. Its obviously that they are so UNINFORMED and stupid at that clinic...the call themselves Dr's...they do research on IC, yet they think everyone responds to the same treatment...they think everyone with IC has the same symptoms. Meanwhile, my ANA is positive and I still have yet to get a Rheumatology appt. Maybe they figure i'll keel over before then...


And this is where I say i've lost hope. Why? Because I dont have any other place to go. I do not have insurance. This was the place that I thought was going to help me. I guess I was wrong. I'm just looked at like another person to get out the door...just another statistic they can't help...I've tried to convince myself otherwise, but it didnt work. I no longer see a light at the end of the tunnel. I know im sick, there isn't any of my "old" self left, somethings happened to me...but I dont know what. I'm just going to try to tell myself its all in my head...because no one seems to believe me. No one cares enough to understand. I'm just another file on a shelf...another name that should be a number. I dont know where i'm suppose to go from here...I feel so numb...I'm so lost. Once upon a time I actually had a life and now at 23 years old..its slowy disappearing and someone tells me to "hang in there." some stupid Dr. tried to make it seem like I'm not sick...what am i suppose to do for 3 months UNTREATED?

sorry for the long post...I just needed to get this out.

[ICNDonna]

Hopefully the gyn will be able to offer you some ideas. In the meantime, be sure to stick with the diet.

Sending warm hugs,
Donna

[dyno]

I am sending you a hug and I second what Donna said.

[leelee88]

Jamie,
I am SO sorry this MAN I refuse to call him a Dr treated you this way! There are some really mean people out here in this world!
But I would not give up hope at all.. You have already been Dx this is your first step. You know what you have! It is NOT in your head!.. I know you do not have insurance, but since you do have a Dx maybe you can call around and try to get in at another UROs office and just pay for the visit. But I would research the Dr and make sure he knows and treats IC patients. There are many that will work with payments. So please do not loose hope!!

I agree with Donna please stick to the diet this can greatly help your symptoms. And when you go to the GYN I would ask her/him about trying you on something like Elavil or Tofranil for the pain. I know my GYN is the who is treating me for my IC right now, because I am SO fead up with UROs. But I am not giving up! I am just researching and looking for the right one. I do know there are good caring ones out there..

But hang in there and please know that you are not alone.. We are all here for you! ((((hugs)))

[JustaPenny]

I don't know where you live, but is there a county hospital or are you able to get assistance through welfare? Do not be ashamed to get it. Before I had the insurance that I do, I DEMANDED health care for myself. After I got this insurance, which is really good, I filed bankruptcy on the hundreds of thousands I was in medical debt.

I think it really helps to come here and talk about what is going on, and I hope you will. Don't give up. There HAS to be help for you.

[windchaser]

i am so sorry that you are being treated like that i sooo understand you are not alone, i got those same answers i also do not have insurance i have to do a payment plan with my uro thank god i found him. I just had my first hydro yesterday i am praying that it works. I just wish that these doctors were more informed and more sympathetic to what we are going through. it is not something we can just deal with or hang in there. It is excrutiating pain that can not be delt with. uggg it makes me so mad to hear about someone going through the same stuff i went through for years. I am 25 and luckly have found a doctor that is determined to find something that will help me. I hope you can find a doc like mine. I will pray for you and please do not give up hope. We all know that it is not in your head and that it is very real! If you ever need to talk please pm me. until then just know you are not alone and we are all here for you.... :)

[jesamyn]

So many of us here have gone through or are going through what is happening to you. You are not alone! Sometimes in situations like this when we feel that our life and illness is out of control, you need to take control of the things that you can. Like your diet. Like trying to keep a positive frame of mind that everything is going to work out like it should..I know this is virtually impossible at times, but just give it a try! Is there a pain doctor that you can go see? Talking to mine more often than not makes me feel better because he gives me solutions. Try deep breathing from your stomach and a warm bath..keep going, you will get through this!!

:pray::pray:
jesamyn

[mlzippy7]

I am so sorry that you have to go through all this.
I wish there was something I could do to help!

[Dreamlove15]

Thanks for all the support. I am still really depressed, and at a loss of what to do. I can't believe that even happened yesterday. I just wonder if I had said yes take my bladder outmaybe they would have taken me more serious. Or maybe I should have consented to another hydro. maybe they were testing me to see if I was a drug seeker...i dont know. I keep saying what if? I am not a dang drug seeker...gosh...ugh. Im the girl who complained about endocet...I wanted something LESS strength. I mean seriously. If I was making this up, I think I would have picked something not so emabarassing like urology ? I also have a freaking positive ANA...and have yet to see a Rheumatologist. Its not just IC I have...I love how I dont matter to drs. It's so easy to shrug me off.


Justapenny, I am seen at a teaching hospital, that is how I am even being seen because I don't have insurance.

I cant go to a pain doctor, even though the last resident I saw at this Uro clinic referred me to one in the same building, because the pain clinic doesnt treat "bladder pain". I was told that the Uro clinic should have known this. So apparently Ic isnt helped by pain management?

I feel like waste of a person...I'm sitting here in pain afraid to take my pain meds because what if a really bad day comes and I have nothing? Ughh.

[mlzippy7]

Jamie
YOU ARE A GREAT PERSON!! You deserve to be treated well. I know you say you can only go to one place because you don't have insurance BUT you can find another doctor and work out payments. If you find a really caring understanding doctor that understands IC and can help you I would go there.
Maybe you can do some searching. I don't know where you live but to me getting my health back is MOST important. I have spent so much money on doctors and hospitals BUT I won't stop. I have paid thousands of dollars for surgeries and treatments that only made me worse. I WON'T stop. I am going to beat this disease or at least give it a good fight.

HANG IN THERE!!!
Feel free to email any time to chat.

[Berkshire Road]

I'm so sorry for your situation.

[Kirs10]

I can completely understand how you feel. My first Uro told me that if I didn't have DMSO treatments which i couldn't afford then i was refusing the standard of care and there was nothing else they could do for me. I was also told by 2 pain clinics that there wasn't anything they could do for bladder pain. It really is very depressing and I just want you to know that you aren't alone and that youare an amazing person and that things will improve. I am not sure when but they will.
If you ever need to talk feel free to PM me and I will be glad to talk to you anytime.
You're in my prayers.
Kirsten

[Sharon]

Jamie Rose,

I wish I could give you a big hug. I have had IC for 21 years, 11 of those years I was misdiagnosis because I had mild IC. Finally my IC took a turn for the worse and I was in extreme pain. My family doctor would just smirked at me and told me to go home and try some vaginal yeast medicine.

I knew I didn't have a yeast infection, so I found a uro and went to him for help. He diagnosis me with IC. I thought great now I have an answer for my pain, now please help me.

He shrugged and said there was nothing he could do. He never gave me any pills to try, he didn't suggest instills, he told me that there was nothing that could be done for IC, that I should just go home and deal with it. He also gave me some advise about not talking about IC to other people, he said that they really didn't care to hear about it. The nurse just said watch your acids.

So, like you, I went home and cried. I was in so much pain during the day, the burning was so bad at night I couldn't sleep, and I just found out that there is nothing that could be done for me. I cried all the time.

So, I started noticing that acidic foods did make me feel worse. Then I started researching the Internet for what I had, my doctor called it urethral syndrome, but said sometimes it called IC.

I started looking for this information up on the Internet, and came across this site. I learned from the diet list, that there were many more foods than just acidic foods that were bothering me.

Since I had no help from the medical community, I tried my best to help myself, and I worked hard at following the IC diet. After a while, weeks, I noticed I felt a little better. I kept up with the diet, and slowly my pain also decreased. It takes time you need to be patient with the diet.

Eventually, after reading this site, I realized that my doctor was misinformed. I looked for another Uro, and found one that was suppose to be knowledgeable about IC. I was so happy, I made an appointment with him.

Well, since I had my IC under control with the IC diet, and my pain was very manageable, he didn't believe I had IC. He said I had an over active bladder. I told him I only got up 1 or 2 times a night, I don't have an over active bladder. He then said, listen, don't let anyone tell you that you have IC, it will ruin your life. What??!?!?!?

So I crossed him off my list too. Then I looked for another Uro, all the Uros that my insurance company would let me use all belong to the same practice, even the first nut job I went too.

I felt hopeless, alone. I kept to the IC diet and I started to feel better and better, I was even adding back to my diet a few things that I could not eat before. I wasn't eating everything that I had enjoyed before IC, but I was doing pretty good. But I had to have patience, because the change didn't happen over night. It took time and determination to stick with IC diet.

Today, I still don't have a Uro to help me, I have not had the chance to try many of the treatments that other IC'ers have had the opportunity to try.
I did find a gyno, who helps me as best she can. She did give me elavil, and elmiron, but neither worked for me.


I still haven't found a good Uro. But, I didn't give up hope, I choose to help myself the best I could, and that was with the IC diet, the best you can do for yourself right now is to follow that IC diet. Most days my pain is very minimal. Don't give up! You can decrease your symptoms!

Good Luck

[elamar]

I know what it feels like to have an idiot male doctor look at you and tell you there's nothing wrong with you! I wanted to ring this guys neck! Like peeing every 10 minutes for days at a time in considered normal?!! Anyhow, I noticed you mentioned your urethra hurt. I have suffered nearly 2 years of constant urethral burning, along with bladder pain and such. Anyhow, this past month I started taking Librax. It is for a spastic colon so many doctors may not think to prescribe it for IC. It is a combo of anti-anxiety and anti-spasmodic drug. It has made alot of my pain go away, especially the urethral pain. I am not pain free, but have been to hell and back trying to get help. I see a leading IC specialist in the country and still suffer! I can't get any pain relief drugs prescribed except ultram. I also had the humiliation of a doctor calling me a drug addict - and I wasn't even prescribed any pain killings meds by her or anyone else so how does that make me an addict?!!! I'm really sorry for the shoddy treatment. There really is no excuse for it. I just wanted to pass on the infor about Librax to see if maybe a doctor would be willing to prescribe it for you. Ultram is also maybe another pain reliever a doctor would be willing to prescribe. It comes in a generic form and it is a non-narcotic formula. It does reduce my pain, but doesn't eliminate it. At least I could function a little better with some pain relief. I think even the Librax comes as a generic so I hope it is affordable for you. I sure hope you can get some decent help. I know how much this sucks. Good luck to you.

[TashaSR]

Hi there. I just read what you wrote and I feel so horrible. All though I can not relate to no insurance, I can relate to your age and stupid doctors. I am 24 and have been very sick since I was about 11. I have spent 13 years have test after test, colonscopys, biopsies, endoscopys, nucleur medicine. You name it, they put me threw it. You see Crohn's disease severely runs threw my family as does ulcertive colitis. I have had all the symptoms of Crohn's even the really really rare ones but nothing shows in the colonoscopys or biopsies. I remember this one time when I was about 15 and I had a coloscopy and the doctor said theres nothing wrong with me and that maybe it is all in my head and I should see a shrink, I thought my mom was going to kill him. About 2 months before my 20th b-day I got a severe bladder infection that infected other parts of my body and I ended up in the hospital. After that I had a bladder infection for a year and 18 months (or so they though) Finally 2 months after my 21st B-day when I was about 2 weeks away from giving birth to my son my mom rushed me to the hospital because I had this severe headache and we just knew something was wrong and I was a very high-risk pregnancy when we got there I found out that my blood pressure was so high that they thought I was going to have a heart attack or stroke. While they were doing a bunch of tests the doctor asked me if what was on my chart was right that I had had a bladder infection for almost two years and I said yes, he said young lady you do not have a bladder infection, you have a bladder disease and as soon as you have your son you need to have your doctor send you to a uroligest. So when my son was 7 months old I had my first appointment with my uroligest and about a month later I was diognosed with IC and now it is suspected that thats probably what I have had my whole life. I know it gets so hard to keep up your hope and faith especially when people keep knocking you down. But try not to give up all of it because hopefully sometime soon something good will happen and you will get the help and meds you need to try to have a semi-normal life. All the best and I will keep you in my thoughts and prayers

[mcdoll]

I know how horrible it can be to have doctors downplay the severity of what you're feeling. I went to over a dozen doctors in a few months and none of them could figure out what was wrong with me, they just kept testing my urine for infection even when I told them I had been tested almost twice a week for awhile and had never shown an infection. When I saw my uro he prescribed me medication for an overactive bladder. When I went back to tell him they weren't helping, he had nothing to offer me or say. I asked for a cystoscopy, but he only did an in-office one, which couldn't diagnose my ic and was incredibly painful. When I begged him to help me, he told me to take cranberry pills. He wanted to have my urine tested again and for me to go back in a month, then he'd prescribe something to coat my bladder. He never even mentioned ic to me. So of course I dropped that guy. When he performed my cystoscopy he didn't even remember who I was. I told him my bladder was hurting me and he asked 'is that why you came to see me before?' Finally I was so depressed I went to an emergency room, they told me they couldn't do anything since they didn't know what was wrong. I went to another emergency room a month later, and finally they had me see a uro who agreed I had ic. Then they finally started treating me. I don't know what it's like to not be insured, because in Canada health care is mostly free, but that causes it's own problems because the system is very slow, since people are going to doctors for the smallest thing because they don't have to pay. I agree with the others that you have to really fight for proper care. I still haven't found a uro I really like or trust, but at least I've started treatments. It's not easy when no one knows what's wrong or when they don't know of all the options. We have a rare disease and often it seems we know more about it than the doctors we see. I hope you will find help soon.