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.

hugs,
Amy

[blondie45]

Lori

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

[ChrissySunshine]

Yup, me too...

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
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 [email protected]@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!