Left a tearful message for my urogyn

[ICLori]

Left a tearful message for my urogyn on the answering machine. I probably am going to be locked up for the next 72 hours now.

I was very very honest with him. You all know about the letter I sent him. He sees that I am literally willing to risk my kidneys - to stay on the Cyclosporine-A - so surely he MUST know I am in pain, right? I have shown him literature that says the pain of IC is equivalent to cancer pain. He even knows the new name of the disease is Painful Bladder Syndrome (soon to be Bladder Pain Syndrome, I think.) Anyway, all of that SHOULD give him a clue that this disease DOES involve pain.

So I left a message for him (actually it will be screened by his assistant, an Air Force Sergeant, and I am sorry she is going to hear this because I know it will upset her) to the effect of, I am asking you one last time for Ultram. I need 80 Ultram per month in order to have a reasonable quality of life.

I reminded him again that I am in pain. Asked him if he believed I was in pain or not. Told him yesterday I went back to taking 3 CyA per day. Reminded him of my letter to Dr. J. stating I wish to decline dialysis and be made comfortable while I die instead. So he knows what that means. And I said - go ahead and lock me up for 72 hours - you can't keep me locked up forever.

At that point I started crying. I talked about going to meet God, and having to answer as to why I was there....and saying I would point at my doctors. Telling him I've been doing this dance with doctors - about 20 of them I think total - for six years, and all of them have left me with untreated pain. I have not found one doctor willing to just prescribe me the Ultram I need. Instead, I have had to get Ultram by other means, means that insult my integrity. It's not right, I should not have been forced to do those things.

My friend has back pain off and on. Her doctor prescribes her these big huge bottles of Ultram. My friend's pain is easily handled by motrin, so she usually takes motrin. My friend has never stayed up all night because of back pain. Care to guess how many nights I've stayed up because of bladder pain?

Her doctor gives her these huge bottles of Ultram (guess where I got the Ultram, folks? No, I did not steal it. My friend knows the situation I am in regarding doctors. My friend is very compassionate. I am furious that I have had to rely on the mercy of friends because my doctors have all failed me.)

I told my doctor I had nothing left to lose. I was sobbing so much by this point, I doubt if he could understand me. I told him, I was asking him one last time for help relieving my pain.

Oh, earlier in the conversation, I told him why pain management won't work (he offered to send me there.) You see, pain management (I've already done that, too) will not just give you pain meds to use as needed. They want you on narcotics (has to be narcotics, apparently ultram doesn't show up in piss test) 24/7 so they can get the expected amount of the drug in the urine. It does not matter that you don't have pain 24/7 but only at night and sometimes during the day. Does not matter. It does not matter that you get increased pain by going on the drugs 24/7 to the point where you are in less pain off the drugs than on them. None of that matters.

So you see, I have been failed by pain management, I have been failed by my doctors.

Now I have made the situation perfectly clear to my doctor. We will see what happens. Most likely I will be locked up for 72 hours, and then still denied any help with the pain.

Any of you ever broken down with your doctors? I wonder why they never "hear" us?

I told him I've done the untreated pain for six years now. I told him I've reached my psychological limit, that I just can't do this anymore. He can either watch me go into ESRD or he can help me with the pain.

Blessings,
Lori

[dancemomof2]

(((((HUGS))))) Lori, and Yes I have broke down many times t omy Dr about 1 thing or another but I have to say he does listen and helps with pain control. I really hope they listen to you at this point in the game and decide to help you along. Locking up a apin patient is nut especially when your asking for a mild pain relief instead of heavy duty meds.

[ICLori]

Crap. :( I feel like crap now. I guess I deserve to. I called again to apologize for my message to the AF SSG. I felt bad about her having to hear this. But I had to get through to Dr. T. I had to do it while I was still feeling this passionate because otherwise I lose my courage and I get submissive and I just live with the pain. So while the iron was hot, I had to strike. Do any of you understand? Have any of you been there?

He hasn't listened to me before. I was hoping if I could just choose the right words, with the right emotions, he would HEAR me. I don't know.

Anyway I called her up to apologize. Apparently she heard my messages because she was crying. crap. I apologized to her, told her I was fine but that I needed to have a real come-to-Jesus talk with Dr. T. She said she wrote him a telephone consult. He will be calling me today or this afternoon probably.

I feel really bad about making SSG C. cry. I like her. I didn't want to do that to her. But I knew if I typed out the note, I would lose courage. I knew that Dr. T would not hear my cry. I needed to let him hear my tears, you know?

So I feel bad but I feel like I'm fighting for my life here, literally.

I hope Dr. T listens to me and relents.

Blessings, thanks guys for listening to me rant and rave again like a lunatic,
Lori

[ICLori]

Thank you so much, Leslie, for understanding and for letting me know others have broken down and "lost it" too sometimes.

I have been to so many Army docs, and none of them will help me with pain. They tell me Elavil is for pain. I tell them it makes me have more pain, they don't listen. They tell me my Bion (or the Interstim) is for pain (actually only one urogyn said that, he apparently was very misguided on this) so they won't help me for pain.

When I ask for Ultram they look at me like I'm an addict. You guys know the look.

I really don't understand it. Why is it doctors will turn their backs on us?

Do they really believe we don't have pain? Do they really believe we don't need help with pain, that we can get "used" to the pain? Do they really believe it would be better for us to die, than to use pain medicine as needed?

I wish I could understand this a little better, I really do. Because right now I'm having such a hard time understanding how doctors think.

Blessings, and thanks,
Lori

[ihurttoo]

Lori,

I had no idea that you have been living all this time w/o pain meds! My Gosh! You have to be sufffering terribly. It saddens and angers me that they have left you to suffer this way. Animals are treated more humanely. I think your talk and tears were long overdue. I have definately lost it in front of mine before. It was long ago before they'd treat my pain. Now I go to a pain clinic. But, I definately remember those days and feel for you immensely. I hope and pray that he will finally treat your pain and be ashamed of himself for allowing you to suffer this long. My thoughts and prayers are with you. Hugs, AMy

[ICLori]

Thank you, Amy. I haven't totally been without pain meds. The first three years, yeah. Then I got sent to pain management. Where they gave me two very huge bottles (like 200 pills each) of Percocet. Because Percocet worked for me, when I only took it at night. But they wanted me to be on it around the clock. Even though my pain was mostly only at night, and sometimes during the day but not all the time and not every day. They wanted me on it around the clock so they would get exactly the result they expected from the piss test. To make sure I wasn't selling the drug or using it in binges to get high.

So I tried it. What happened is within two weeks, the narcotics leaving my system via the kidneys/bladder hurt my bladder so badly, that I was in MORE pain literally on the meds than off them.

My doctors could not believe that, thought I was messing with them. One doctor even tried to tell me narcotics do not leave the body through the bladder (they don't? Then why the piss test?)

People here on the boards could not believe me, either. Told me to try a different narcotic, etc. Because it worked for them, they could not believe my bladder was so incredibly hypersensitive. I have such a hypersensitive bladder or nervous system or what have you, that Elmiron makes me worse. Elavil and every antidepressant except wellbutrin make me worse (wellbutrin is neutral, helps with depression not pain.)

Because only a minority of us are this super-duper hypersensitive, no doctors will believe us. I'm sure Kara has the same problem I do.

Anyway, back to the percocet. So I had these huge bottles of percocet left over after I walked away from the pain clinic. After my bladder healed from the narcotic onslaught, I tried them again - at night only - this time they worked . I had irritation in the morning when I awoke, more so than the usual IC stuff, but I got to sleep at night, which was heaven. I had to be careful, because eventually it stopped working so well. And after a few months, I had to take a two week vacation to lose tolerance so it would work well again. But I can handle two weeks of untreated pain - just not 40 years, you know?

Anyhow, that was when I was getting the Bion and I was hoping it would help me with pain. Even though I knew better than to hope. So then I come here. Ask Dr. T. for help with pain. He sees the very huge long list of meds I've tried, neurostim, tens unit, you name it. PT, you name it. I mean really I think I've tried just about everything there is. I would like to try rescue instillations, but no doctor will put them together for me/prescribe them for me. So that is one thing I have yet to try, because my docs can't be bothered. Oh, and haven't tried the lidocaine patches yet either. Will ask my doc about that one.

Anyway, answer was "no" to Ultram every day. Maybe five pills a month, okay. Not the 80 pills a month (that's what I figured out I need) because "pain pills are bad for you." Offered to send me to pain management. Tried to explain to him how that went before. Didn't help.

So there I was, telling my friend about this situation, seething at the doctors. She helps me. Thank God for my friend. So the same situation -sleep at night, grit my teeth if there is pain during the day, and after a few months, gotta go off it a couple of weeks so it will work good again. No problem. I mean, I have a reasonable quality of life that way.

But now I am down to my last few. Now I have to choose between going back up on the CyA and losing my kidneys/my life, or asking for 80 ultram per month.

So I left that message.

I also said I would be willing to do a superior hypogastric plexus block for pain, but that the anesthesiologist would be sure to ask me, "have you exhausted all oral methods?" And I will answer truthfully, Ultram works for me but I can't find any doctor to prescribe it for me. Wonder how that will go over? Because you see that nerve block has lots and lots of risks. Used to be used only on cancer patients dying of cancer because the risks were so high.

Anyway...there I am. Here I am. I had to scream at my doctor and cry because my back is up against the wall. I can't - won't - live in untreated pain anymore. I shouldn't have to.

Thanks for listening again,

Blessings,
Lori

[ihurttoo]

Thank you for the background info. I truly hope and pray that he will finally do what is right and help you. I mean geesh! It is not like you are asking for even the Percocets! It is unreal that you could get daily, round the clock Percocet but not 80 Ultram! It amazes me that these Drs can be so callous.

If he still will not help you, please find a new Dr or a different pain clinic. It may be that way at just that pain clinic. A new Dr. would more than likely be open to the Ultram and also to the instills.

The rescue instills really help me alot. I know that there are mixed reviews of these, but I get alot of relief from them. (It just doesnt last long enough.) But, it is a few hours of pain relief. I do them a few times a week. He told me I can do them daily, but I cant b/c it send my urethra into fits if I do them more than a few times in a week.

I just really think it is time for you to get a new Dr. and possibly try a different pain clinic. Even if it means driving a ways to get to one, it would be worth it to drive once a month, to get relief every day. (At least that is what I tell myself when I drive 5 hours roundtrip to mine once a month!)

I just hope that he will finally help you. This whole thing just really upsets me that we are forced to fight for basic care that most people take for granted that they will get when they are sick.

Please let us know as soon as you hear something. I will be on pins and needles all day, waiting to hear. :pray:

hugs,
Amy

[blondie45]

Yes definitely I have broken down to many doctors. I don't think they get it until you do. I so wish you lived near me, as my uro will prescribe ultram (tramadol) with no problem. He is such a great doctor and usually lets you try what you ask for or what you say has worked cuz he doesn't know where else to turn either to help, although the tramadol helps more with my fibro pain and go figure my rheumatologist won't give me tramadol either.

You are probably limited to doctors (like most of us with insurance the way it works) but if there are any others you can see in your area, please try another one (you have probably tried tons already I know) and hopefully you can get the relief that you need.

If you get locked up for 72 hours, the rest of us definitely will be right behind you, as I am sure most of us have broken down and said those things also!

Please hang in there!

[leelee88]

Oh Lori....
I feel for you..I dont understand why doctors are they way they are, They go to school to be doctors so they can help people right? But now they are so scared to give us anything for pain, because they might get in trouble..Thats what I keep hearing..

My doctor will not give me anymore lorcet plus, its the only thing I can take without getting very sick..It makes me so mad, they just dont understand ..I even told him I only take a half of one a day and thats in the evenings when I start having pain.. He still said no...So I know how you feel..

I just keep praying that somebody out there will here my prayers and make this disease more known about, If people and doctors were more educated about IC, I think they would have no problem prescibing pain meds..

But Lori, It looks like until they are more educated, people like us have to suffer...Its just not fair!!!
Well I hope you start feeling better soon, you know you are in my thoughts and prayers:angel:

[ChrissySunshine]

Hey Lori, I've been there too....just last week as a matter of fact. I thought I was gonna be locked up too, but finally got to see a doc and I'm trying Cymbalta. I was (and am) literally breaking down (physically and mentally) from the constant pain. I have been without meds for about 3 weeks now, and I don't know how I'm gonna do it.... I know it sucks, I'm here if ya ever wanna pm me. I do hope you get some relief soon! ~ Chris

[SandyRN]

Lori, I know exactly how it feels to live with untreated pain and what it can do to you psychologically. Several years ago, before I found this board, and before I found my pain mgmt doctor I was in such severe all over body and bladder pain and there was NOONE to help me. Nobody would listen to me except Tom and I asked him to drive me to the Emergency Psych Unit here. I was literally going crazy with pain. I could barely walk, I could barely talk and I literally begged them to admit me to the psych ward where I could actually TALK to someone who would be forced to listen. My rationale was that they're psych docs and psych nurses, they listen, thats what they're paid to do, so they've GOT to help me.

In the psych ER the determined that no, I wasn't crazy, but I was in definate pain and gave me a rx for neurontin. I cried all the way out the door...they believed me, but they didn't really help me.

Finally, after going from clinic to clinic and doctor to doctor I wound up at a pain management center with an appt with an anesthesiologist. I really don't know how I wound up there or who sent me there, but this man sat down, and listened, and told me about my pain management doctor. About a week later I got in to see this doctor and have been with him ever since, and he's probably, literally, saved my life.

I don't know why I felt compelled to tell you this, but I just wanted you to know I know what untreated, long term pain will do to a person, and I hope that this doctor gives you the Ultram that you need and deserve.

Hugs, Sandy

[sweetangel2080]

hi lori:grouphug: :grouphug:
did the doctor call back. soo sorry to read you are going through sooo much struggles just for pain relief! I think you should get another doctor too

Surely they should think ultram is better than going back on cy A which could damage your kidneys further. not been online lately so not been able to keep up but they were slower/slightly impaired? but then in this post I read about dialysis?

It's awfffulllll that you can't even get pain relief. the first pain med I tried is ultram. It sure varies from doctor to doctor but surely when they see the pain you have, the list of meds you've tried and that YOU are saying the percocet causes more bladder pain, they should believe you!!

I reallly would look into another referral to a pain clinic or different doctor.

[humpieumpumkin]

Hello Lori,
I dont have too much more to add then what the othetrs suggested. I just want you know that I understand, and I have broken down on almost every occasion I see my uro. I will pray you find an understanding Dr. I will also pray that you get lifted out of this depression. I think you did the right thing by calling the Dr. He needs to know the quality of your life. Its his job to fix it. Thinking of you...

Erika

[ICLori]

Whew. I'm sorry for worrying you guys. I really had a bad meltdown, didn't I? I'm sorry. I just got my hopes up so much for the CyA. I was so happy to be free of pain. I just couldn't handle being back in pain after that, you know?

I'm sorry.

Anyway, I'm okay. I left that tearful message, I wrote an even worse note (and this is after that letter I sent to Dr. T., the one that made people here sad when they read it, not the mad one to the other doctor) saying, Dr. T., I don't think I can keep it together anymore, I think I am going to die because I can't do this anymore, if you can think of anything to help me, please do it now, please. I was begging him for any help. I told him Ultram works for me but that I'd be willing to try a bunch of things like the lidocaine patch, surgeries (denervation, blocks, etc.) and all kinds of things.

Anyway, luckily for me, I didn't get locked up (I probably should have been, I deserved it writing crazy letters like that) and Dr. T. is going to help me, he's really going to do a bunch of phone calls to find me:

1. A uro who does the instillation thing (rescue, etc.) to try those
2. he's prescribing me a lidocaine patch/cox-2 inhibitor (I asked to try those, and said, if they don't work, may I have ultram, and he said yes this time)
3. he said there are surgical things they can do, denervation and severing nerves at S-5 and all kinds of things like that. Nerve blocks, etc. I mentioned I would be willing to do those things in my letter, anything that might have any chance of working. He even said if someone couldn't do it here, he'd send me to Cleveland Clinic. I told him I'd heard very good things about that place. I think I even read about that place on these boards...? Can't remember now.

So anyway, I had my psychiatric meltdown the last few days, yelled and screamed and cried and let people know how much I needed help, instead of just trying to be a polite little patient, and I am very fortunate that Dr. T. came through for me. Now, I'll say, he still is very leery of anything that is habit-forming, and I can't blame him, but he's willing to do anything to make sure I won't die. Anything. So he came through for me, God bless him.

And you guys have come through for me here. Thank you all so much and God bless you. I am so sorry for having worried you guys.

I've been nuts this week, I know I have been. I even knew it at the time and I just couldn't get ahold of myself. I'm sorry. I think it was just, the pain coming back, losing hope because I thought we'd already done everything possible, then the whole, wonder if I'll die because of my kidneys, etc. I think it was all just too much at once, you know?

Sandy, thank you so much for saying you understood. That you've been there. I know you've had much worse pain than I have, I think maybe if you only had bladder pain and not the rest of it, you are strong so you probably wouldn't have felt down at times about it. I'm just not a very strong person is all. I'm really not. I'm a wimp about pain. I know I am. I try really hard to act like I can take pain, I never let the doctors see me cry, and even dentists always say what a great, calm patient I am. I really try. But inside, I really hate pain. Especially when it goes on and on.

Soooo....I am going to do whatever it takes. Anything Dr. T. suggests, I am going to do. And in the meantime, if nothing else, I will have Ultram to help the pain. So I will not do anything nutty now or anything. I told my husband about my meltdown, too (I hadn't wanted to admit to him - I've been complaining so long about my dumb bladder, I didn't want to complain again, he's so tired of it, who can blame him.)

My husband is going to come home as soon as he can (he has to teach a lab, it is too late to get any of the other professors to cover for him, I understand) and I know we will talk more tonight.

I feel so ashamed of myself. I worried you guys, I acted like a total nutjob a@@hole by writing and rewriting that Dr. J. letter, I was feeling so incredibly sorry for myself, I just can't believe I did all of that. I made a wonderful young lady cry, I made Dr. T. worried, I made him spend time reading my stupid long letters, I made him spend time he needed for other patients and other things, on me because I was selfish. I worried my husband, now. Just because I"m not strong enough to handle the bladder pain again.

I even reached out to my pastors at my new church I've been going to (I don't know how I will dare show my face there again.) I have been dropping off baked goods, and usually I write a short note saying what I enjoyed about the sermons, saying how much I appreciated all they did for me and the rest of the congregation, etc. Well, anyway, this time I was selfish and I put in the note about my kidney thing, and I put that I was considering asking for hospice care instead of dialysis because I was displeased that my autoimmune disease pain had returned. Naturally, Pastor T. called me and asked what he could do, if I needed help, wanted to talk to me this week, etc. I told him I was fine, and that my kidneys were getting better. So he felt reassured (I think) and then today I wrote a short e-mail saying, thank you for your concern, I'm going to be fine, I'm just going to go to my doctor and demand that he help me with pain control. I said, "I'm fine but my doctor is going to get blasted!" I meant not shot with a gun, I meant blasted like, he was going to hear all my feelings. I hope Pastor T. didn't think I meant blast as in gunfire! You guys don't think he would have interpreted it that way, do you?

I'm so sorry everyone. I'm sorry for worrying you guys. Thank you for being so understanding and saying you've broken down sometimes too.

I feel so ashamed, guys. Oh, how will I show my face to Dr. T again, how will I show my face at church? I am so ashamed. Why can't I ever just be rational and logical and do things just a little bit, in moderation? Why do I always have to be, either the polite patient or the nutcase mental patient, never anything in-between? I'm just not very competent, that's all there is to it. Sigh.

Well, I guess I will just have to be ashamed, that's all there is to it. I did what I had to do because I felt like I was saving my life. I think I WAS saving my life, guys, honestly. I think I was losing my sanity there. I'm sorry. I'm okay now. All I needed was hope, all I needed was Dr. T. saying, we're not giving up on you, don't give up on us.

Blessings, and many many many thanks, and apologies,
Lori

[SandyRN]

Lori you have absolutely nothing to be ashamed about! We all have meltdowns, and that's the reason I told you about when I went to the psych ER. I wanted you to know that you are not the only one. I really am not as strong as you think I am. I do NOT do pain well at all, and have a very low pain tolerance and a very high medication tolerance...a mixture that really doesn't go well together.

You NEVER have to be ashamed for admitting you need help, and you never need to apologize for getting upset. I was worried about you, but I never thought that you were a rotten person for venting your anger and frustrations with us. I really thought that's what this board was here for...we're here to help each other through the good and the bad.

You post what you NEED to post when you want to post it. I for one love you to death and only want the best for you. Ok?

You admitted you were human, and thats ok! I want you to know that I am glad to know you! :grouphug:

[Annie2]

Lori,

Please don't feel you EVER have to apologize!!! I don't think I've ever seen anyone describe the pain or emotions of IC as well as you have. You have given so much validation to my own feelings. Do you realize how MUCH you have contributed to all of us here? How much you have helped every one of us?!!!!!!!!! Even when you vent (and that's such a rare occurance), you still help the rest of us. Just look at the number of people who reply to your posts.......we all love you and care about you. So please don't appologize. Even in tremendous physical and emotional pain, you still worry about others. We treasure you and want to give back to you. When you need help or need to vent, please don't hold back. We're here for you, too, just as you are here for every one of us.:grouphug: :grouphug: :grouphug:

Lori, I just got back from PT, am in town and am certainly willing to do anything I can to help you. I sent you a PM in case you no longer have my contact info. Please....feel free to call anytime....just to talk if needed...or for any reason. I have some info on local civilian docs, etc. I really mean it when I say I'd be more than happy to help you in any way I can.:kissing: :grouphug:

[ICLori]

Thank you so much, Sandy! I guess maybe someday I will look back on this whole thing and just kind of laugh.

Well, if nothing else, I got results, I got Dr. T. to mobilize the troops to get me treatment of one type or another. And I am willing to try anything. I am scared of the nerve blocks, I'll be honest with you, because I heard they really hurt, and you have to be awake, but I will just have to get through it and deal with it. It will be worth it if I get some relief.

Thank you so much. I'm sorry you have a high tolerance for pain meds. You know, I noticed from your photo, you have lovely red hair. I read once that redheads need more anesthesia than people with other colored hair. I mean, it's some kind of genetic thing that goes along with the red hair - like a cluster of traits, if that makes any sense? Anyway, if you guys need more anesthesia during surgery, it makes sense to me that you'd need more than the average amount of pain meds.

Thank you all again so much.

Blessings,
Lori

[ICLori]

Annie, thank you so much, bless you! I will go read my pms now, I need to go do that...

Thank you for all your kind words :) And for the offer of help! :) Did the PT help some? I hope it is helping...

Blessings,
Lori

[waterflow]

Lori, sorry you had to explain to your doctor just how badly in pain you were and you needed help. You don't ever have to feel ashamed for doing so. If he wouldn't listen to you in normal talk then screaming and yelling will have to do it. Glad he did fianlly listen to you. :) I've been where you are as well. many times too but with me when I told my Uro I had had enough and was going to do something (but didn't, ran to him) he called a physchytrist on me and I had to go and see one. I found never to do that again. People don't realize how much stress is put on your body and mind hwen you are in constant pain 24/7 and not just a little pain but big pain. I am very glad your doctor is starting a process of finding other ways to help you and you got your Ultram. :woohoo:

Sandy, when I went to the hospital because I couldn't take it anymore and just wanted to spend the night they wouldn't let me in either. Actually thought I was crazy but I know if i had said I was going to kill myself I would have gotten in easy. Would be a hard time getting out becuase I asked what would happen if I did go in. Sorry you had to get to that point as well.

[SandyRN]

Waterflow, exactly...they did ask me if I was suicidal, and I found out that it was a mistake to say no! I really didn't want to die, I just wanted to be out of pain! It's a crazy world we live in when people that deserve pain relief don't get it.

[SandyRN]

Duh, forgot to write what I was going to say to you Lori. I had been told in nursing school that redheads needed more meds and more sedation. I always thought that wouldn't bother ME, that I was healthy and in good shape and would always be fine! Little did I know that was not a myth and at least in my case is amazingly true! I'm a true redhead too, born with flaming Lucy hair! LOL

[SharonA]

Lori...Okay, you had a meltdown...so what. No need to feel like you owe anyone an apology.

I don't think I can count the number of meltdowns I have had because of this blasted disease. I remember being on the couch night after night writhing in pain and wondering why God wouldn't take me then and there. I just wanted to not hurt anymore. I had a uro who told me after my cysto/hydro that he would not help with the pain and to call if I needed him. Shoot...what was that all about? Call????? Wasn't that what I did when I made my first appointment? Call him???...no way. Never again.

So I suffered for months thinking that my life was over and I would always be in pain. MELTDOWN!!!!

Then I found a PCP who understood that IC pain is real and terrible. She is the one who first put me on Elavil. The very next day after my first dose, I felt much better. Why couldn't that uro have done that? I spent months in desperate pain because he would not give me anything to help. He must have known about Elavil. But he wouldn't give it to me???? I wanted to go to his office and scratch his eyes out. Maybe then, he would understand what real pain is. Oh yes, I am very familiar with IC Meltdowns.

Lori...we love you and want to help. Have as many meltdowns as you need to have. We will still be here for you. :kissing:

[dancemomof2]

Lori,

I am so glad your Dr heard you this time and is looking at options for you.
Heck I have MELTDOWNS weekly about one thing or another. We are human and also dealing with IC.

[sweetangel2080]

lori
so glad to hear your doctor has lots of options and is going to try all those things to help your pain!
No need to apologise, think all of us who are in relentless pain can get down like that. I def. know the feeling of going to ER and wanting them to keep me in to help me or that other things would be preferable. Think ongoing pain and illness can do that to anyone for some periods of time. Especially when you experience relief and then have a setback like yours.

BUT your doctor's suggestions and list seems extensive so hopefully one of these options will be the ideal thing for you!! Am glad you are so optimistic as with any new treatments, there can be a few setbacks but hopefully will help you gain remission. On the plus side since cytotec and cyA gave you some remission, then hopefully that should mean that something else has a good chance of doing the same! Don't know on what theory, but have never had a remission at all apart from less symptoms but hope once I do, I will be able to get more remissions. Well just now would settle for less symptoms and live with it with pain meds and IC meds etc!!

[ICLori]

Thank you guys so much! Boy, I'm feeling just kind of jittery today. :) Just that post-meltdown weirdness, you know. Like "OMG what did I just do, am I a lunatic, why did I just cry and rant?" Annie2 let me call her, and it cheered me up so much to talk with her, she's an angel! :) Thank you, Annie! :)

And you guys are so wonderful, it comforts me so much to read your words. I feel like such a goof, but you've all had meltdowns, you've all been there. I tend to not handle setbacks like these very well at all. When I have relief, then it is taken away from me, it just seems harder than ever to cope with the pain.

Sweetangel, it must be so frustrating for you to not have had a real remission yet. Please don't give up hope, there are so very many things left to try, and they are coming up with new things every day almost, it's just incredible how fast things are happening. Sometimes I go to a urology site that has a lot of studies and I'm stunned at how many of the new studies relate to IC or are about IC! It's amazing, really! So don't give up hope!

Blessings,
Lori

[waterflow]

Lori, I get that after weird feeling too. Hopefully it will pass quickly. You know I feel really bad about not keep up with your posts about this. I didn't know you were on dialaysis and you have been responding to my posts when you were having a worse time then me. Please forgive me. :grouphug:

Sandy, I've never heard the redhead story. Maybe dye your hair blonde? :wink: They do have more fun I found out but I put mine back to brown. Was tired of re-doing it all the time.

[vm]

Oh, Lori..... :kissing: :kissing: :kissing: Sounds like your breakdown was needed in order for your doctor to really HEAR you and hear just how bad the pain really is. I know what that post breakdown weirdness feels like - it's almost a feeling of shame. Everyone here loves you and think no less of you for really baring your soul recently. You've been through so very much. This is a safe place to be real. :kissing:

[Annie2]

How right you are, Kim!

Lori,

It was such an HONOR to speak with you!!! I hope you will feel free to call anytime. When my next meltdown occurs, I know I will be calling you!

One thing Lori and I talked about briefly but hasn't been mentioned here and might be worth mentioning for any newbies who are reading this thread is the internal organ pain--brain connection. Pain signals from internal organs like our bladders are sent to the emotional control center of the brain. As we all know, living with IC is emotional in and of itself. But when those pain signals hit the emotion controlling center of the brain, it naturally amplifies our emotional responses. No wonder we all have meltdowns! When strong pain signals are continually getting sent to that area of the brain, trying to stop an emotional reaction is like trying to stop the knee jerk reaction when your doctor checks your reflexes. We aren't ashamed of having the knee jerk response when hit just below the knee cap with a doctor's hammer. So why should we beat ourselves up because we have an emotional response to bladder pain signals being sent to the brain?

Now for a funny meltdown story of my own to make everyone smile. Well, it wasn't funny at the time, but I certainly can laugh about it now! It was early in my IC journey. I was very upset because I found the diet worked for me and I REALLY did NOT want it to work... so I could continue to eat like everyone else. I was upset. And I was in pain because I had cheated on the diet the day before and was paying the consequences. It was a Saturday, my hubby was home and I fixed him a nice lunch. I told him to go ahead and eat while I fixed an egg salad (made with cottage cheese instead of mayo) sandwich for myself. I had chopped the hard boiled egg and was mixing in the cottage cheese in a bowl. I was hurting, was so jealous because my hubby was eating something yummy I didn't dare have and the tears started rolling down my cheeks. So I started stiring that egg and cottage cheese mixture...faster......and faster ...and FASTER! Pretty soon that stuff was flying everywhere....but I couldn't stop...I kept going until that bowl was empty and then I collapsed into a ball just sobbing and my hubby had to hold me while I cried my eyes out. The crying part isn't funny......but do you know how hard it is to clean up that much egg and cottage cheese flung all over the kitchen? :bonk: I really had that stuff flying. Oh what a sight! It didn't even make a satisfying sound like SPLAT, either! No, it was just a soft tiny "plop" sound as each bit hit the walls, cupboards and floor. I was still finding little pieces of that stuff a week later!!! You know what I did afterwards? I went out and bought a really cheap set of dishes to keep in the cupboard to use when I am feeling down about the diet. I figured if I threw one of those, as long as I aimed for something other than my dear hubby, I would at least get a satisfying shattering sound out of it. :lmao: Funny thing...I still have those cheap dishes and not one piece of the set has been broken. But they are there if I ever need to use them. I figure throwing them at the shed outside in the backyard would be good so there wouldn't be so much of a mess to clean up inside the house.:rolleyes:

[Bessie]

Lori,
We are all here for you, to listen, to support, to care, and to love. I hope you don't ever feel the need to apologize for your feelings. We are all pulling for you. I am praying for you and keeping you in my thoughts every day :)
You have touched my heart :hi:

[Bessie]

Annie,

I just loved your egg salad story :smile tee

[waterflow]

I loved the egg throwing story too. :lmao: It's hard just to get it off of dishes. :rolleyes: I can only imagine off of counters and cupboards. :bonk: Glad you still have your cheap dishes intack. :)

[SandyRN]

Annie, I loved your story too!! I used to throw remote controls because they were always handy. I finally stopped doing that when I realized they don't always work too well after being smashed into the wall!! Not to mention the nasty marks I was always repainting on my walls! I have a much better reign on my temper now! Now that I think about it, I really can't remember the last time I threw anything or slung food around my kitchen! LOL

Thanks for the laugh!

[Moonheart]

Lori, this disease does terrible things to our minds. I didn't have adequate pain control, and indeed didn't even know what was wrong yet, and I was literally losing my mind. I was actually previously diagnosed as being bipolar because of it.

Guess who doesn't have bipolar symptoms anymore? :) Yep. Me. ;) I do have my flying rages still but what I have realized is that it's usually when I'm flaring and I just can't take one more single thing. :( Unfortunately it usually comes out at my family and I have a real "talent" with words, I can cut through to the heart and I'm not proud of that. :(

So yes, absolutely I can understand what you are going through, what you went through, and you WILL be okay. Thank God you were heard and you will be getting help. It's a miracle and I know we are all grateful for it.

On a side note, one reason I was thinking your doc might not have wanted to prescribe Ultram would be because it has kidney issues. It has a warning in the literature, or it did a couple years ago, about it affecting either the kidneys or the heart. So perhaps that was the reasoning, because it sure it better than hard narcotics. Also, some docs consider it a narcotic because it has addictive features, even though it's not classified that way.

I think you should relax and let your mind heal from this trauma and pamper yourself. That always helps me. ;) Know how encouraged I am for you and am proud of you for standing up for yourself. :)

Hugs,
Moonheart

[Kara29]

Lori,

I hear you on all of this. In fact I lost it last night on the phone with my doctor in Boston. I am still MAD at him for the way he treated me! He is not the only doctor I have lost it with but it hurts the most because I have seen him for 8 years and have been nothing but loyal to him. I've done whatever he has asked me to and I have never done anything off track so to speak. He treats me like just another bladder..........he doesn't care about me as a person.

On the other hand, there is hope Lori! I found a doctor that is so compassionate and professional. He has me call him Mark. And we talk once every few weeks on the phone an through email. He's worth every penny I have not even spent on him yet. Why can't they all be so kind! He tries to fix his mistakes and he never leaves his patients in the dark. I've talked to several of them. I keep calling him Doctor but he feels that it is old fashioned. The doc in Boston is the exact opposite!

I too have severe pain but mine is 24/7. Narcotics make me MUCH WORSE!

Not many people believe me, even on here, but it's true. So I really honestly can relate to all of the things you have said here.

I am sorry I can't type more but it hurts to much. I PM'ed you!

Lori, you are always in my heart! I want this relief for you and a happy, healthy life ahead.

Love and HUGS!

Kara

[ICLori]

Oh, boy, I'm in grateful tears right now. I don't deserve this kind of support! I really love you guys.

And ICNDonna, thanks for gently reminding me it mght not be a wise idea to send the vent letter - you were absolutely right! My neph called me today and he was so sweet. I just don't know what got into me, I was horrible. I'm glad I didn't send that. I've just been kind of crazy for a week and a half. Then I had my major meltdown and now I'm normal, sort of. Or what passes for normal in me.

Thank you all so much. I hope that I can help you guys some day when you need me.

Oh, my neph also talked to my urogyn about giving me some Ultram so I can sleep at night. So he prescribed me some! I can handle the pain I have off and on during the day just fine, but the whole never sleeping part was the worst part of this disease for me. So I am glad for the Ultram, it really helps make my life a little more bearable.

The bad part of the conversation, though, was that he was worried about my kidneys still. I thought it was good my kidneys were recovering, but he said that he's still worried, because the longer the renal failure goes on, the more likely scar tissue will form, and then it will turn into permanent damage if that happens. :( Bummer. So now I'm kind of a little worried again, but I'm trying to be hopeful and not think about it too much. I keep telling myself, even if I have to go on dialysis, I'll still have a better quality of life than I did with the IC before I was given pain meds!

This weekend is going to be kind of crazy, we have a bunch of things we kind of have to go to (most of them not really very fun) but I'll get through it. Sigh. I just won't be on-line until maybe Monday evening or something.

Blessings,
Lori

[Annie2]

I'm so glad you checked in, Lori, as I have been thinking of you all day. Thank goodness you have ultram now! Sleep deprivation makes everything so much more difficult. Getting some good, uninterrupted sleep and rest goes a long way in helping us to deal with difficulties. Even daytime pain, while certainly not easy to deal with, is more tolerable after a decent night's sleep.

I shall continue to keep you in my prayers! I certainly hope your kidney recovery continues smoothly and that scar tissue does not form or cause any further complications!

Please update us when you can. In the meantime, know that you are in our hearts, our thoughts and prayers.:grouphug: :grouphug: :grouphug:

[icnmgrjill]

Bernie Siegel MD, the author of many books on surviving cancer, once said that he doesn't want patients to be "patient" with their medical care. In fact, he said that he thought that that delayed their care unnecessarily. He wants them to be FIRM but not rude, LOUD and ASSERTIVE as they communicate their needs. He called that being a "respant"... a responsible participant in their medical care.

Lori... you just proved his point. You got vocal... you stated your needs firmly... and you got the action you needed. Bravo to you girl!!

Jill

Jill

[SharonA]

Yeah...I agree with Jill. Good for you, Lori. *Applause...Applause...Applause* This is a good lesson for all of us.

[flowerangela]

i found this thread years later and am in tears from what lori and many others here had to go through. i know what its like to have a dr NOT listen to you when sometimes you may in fact know more about the condition yourself than he does.Maybe he missed that part on IC in med school or he doesn't care at all.When I was recently in the hospital last week I had a very rude dr in the hospital that basically said "why are you here,youre just taking up space nothings wrong with you"...when I told him why I was there (recurrent UTIs) i thought at the time.. this is was at the time they all thought i had a simple bladder infection or uti again. i broke down and started crying and going off on him at the same time telling him i was in so much pain and basically not to mess with me.He came back in the next day,and made some rude snide comment again.I told my urologist,who had suggested this dr come to my room and see me and he said the guy had also been rude to him too.To this day,I think about reporting him for bad bedside manner.He said some of the most hurtful things to me and I've went through that enough in my life and not reported it (before I was sick).I've learned now to stand up to dr's and not be miss perfect patient when their treatments arent working for me.I am my own health advocate.A lot of them do not have empathy and don't put themselves in their patients shoes or act like what if it was a family member of their own.Some are just in it for the money,specificially insurance company money..not for the reason the medical profession originally got started which is HEALING.They can be a genius,but if they dont have that empathy or respect for others..common sense for lack of a better word they will have a hard time with their patients.

and dont even get me started on being forced to go to a psych ward cuz the cops believed my abusive boyfriend over me,yes, i was having suicidal thoughts but it was because of the man that called the cops on me had been treating me so bad all those months I completely lost it.Sometimes emotional abuse hurts more than physical.I am a survivor of that... and then all of a sudden I am diagnosed with IC after I get over the trauma of that *sigh*.

[bob04951]

There is usually ALWAYS a patient advocate in any hospital, and you should report poor physician, nursing or any other bad behavior to them. They will go to bat for you and will absolutely pursue complaints.

Sorry you guys have been through such bad experiences. Kinda makes you scared to go to a hospital again, huh? Which only adds to your stress, which only adds to anxiety, which leads to panic attacks, which can lead to depression and vice versa. You gotta treat those, whether through some therapy or just having a few pills (like xanax) on hand and not even taking them, but just knowing they are there for emergency attacks can help. It is a horrible feeling to have a meltdown, the world is coming to an end, you are dying, you can't control emotions, you want to curl up in a ball in a dark room. Panic attacks can last for days and keep coming at you over and over if untreated. Check into that sweetie.

And what was the kidney "failure" attributed to? Glad you are recovering from that. Take care of your mental state, you do not want to have another meltdown and feel like that again. It is a horrible feeling, and can leave you a little afraid about leaving the house, being in social situations, having the phone ring, or have anyone knocking at your door. Talking with a therapist may help, they are afterall 3rd party impartial, and may make some recommendations for you. Hope you stay well, hang in there, and keep the faith. Jill, wife of Bob

[OllieR]

This thread is mostly old, but I felt compelled to comment. It is important to take care of your mental health. And, don't be ashamed to admit you need help. I mean, when you think about it wouldn't you think it would be concerning if you sat around in pain for years and didn't go crazy lol? Anyways, I have been to a mental hospital because of my IC. I was not at all suicidal. I went voluntarily. It was just too much stress to be in pain for so long, facing difficult treatments. It really helped me a lot.

I learned a lot and still go to therapy there, but I don't have to spend the night anymore :). (I only stayed overnight for a week) I would say at least, if not more, than half the people there had a serious medical problem. It's hard to deal with this stuff. Everyone needs a break. If you feel like you need help, it may be a good idea to find out if there is a behavioral health center in your community. I first went to a regular hospital and they pretty much just stared at me lol.

Anyways, think of any stereotypes you have about treatment for mental health, and throw it out the window! Especially those visions of nurse ratchett. It is a very nurturing and healing environment and you should be treated with the upmost respect. Many people in mental health recovery are just trying to navigate difficult situations and illnesses.

Good luck to everyone! Mental health is important. If you truly believe you need help, please seek it and please be firm and adamant about your desire for treatment. I hate to see that anybody would be turned down. And don't turn away because you're not suicidal. The last thing you want is to keep putting it off until you are suicidal or intend to harm yourself! Stay strong IC friends :)

[Charles Beverly]

IC pain is unbearable. Doctors can be sued for Refusing to treat your pain. It sounds like you need another doctor. When I read your words it really got to me because I've been there also. Don give up but please know there's lots of people on here that understand completely. Take care and good luck.