what do I do if they refuse to give me pain meds?

[ICLori]

Hi everybody. I've been toughing it out for 4 1/2 years without any relief from IC. I'm in a flare more often than I'm in remission. Last year, I would say I was in pain 90% of the time. Since being on Elmiron, it's helped, I had a nice remission, but it's been about six weeks now of flare.

I was given (reluctantly) a script for 25 percocet by my uro to last me until my pain management clinic meeting 27 July.

I think I am going to need more before then, my flare just keeps getting worse and today for the first time I had to take percocet during the day.

I have heard that they never give you meds the first visit to the pain management clinic - so that means it won't be two months before I get help, but probably 4 months or longer.

And I am worrying that they won't give me pain meds at all - that they will be like my uros and just expect me to live with the pain. What then???

I don't want to live in this agony without the help of pain meds. I am urinating 40-50 times per day/night.

What do I do????

Please any advice would be helpful. I'm feeling really scared today, I don't want to live with the pain anymore.

Blessings, Lori

[windwalker]

Hi Lori, I see you have been on elmiron, have you gotten on Elavil? The first night I took that, and I am only on 10 mgs a night, I was able to sleep sooo much better, I think I got up once the whole nite to "go". I am sorry you are in so much pain, my prayers and a (((HUG))) go out to ya.
Dawn

[crystilclear]

I'm sorry they are acting this way with you. I have been up against the same thing. I hope everything works out for you. I know how you feel. I have had one perscription filled for me of 10 vicodin that's it. I made it last as long as I could and have ended up in the ER more than a couple times. I wish I had the answers for you. I wish you luck and I hope you will find a sympathetic and understanding doc. Take care - Chris

[ICLori]

Hi, Dawn, yes, that's the problem. Elavil and the other tricyclics work for 60% or something like that of the IC'ers. For me, they cause increased bladder pain, to the point where I am in total agony and peeing every five minutes.

Today I had to take a Percocet during the day because my bladder was so irritated from the tricyclic I took last night. Something in them just kills my bladder.

You see, that's what worries me. Everyone - doctors included - say "but the tricyclics MUST work, try them again!" And no one seems to want to admit there is a possibility that they could increase my pain instead of lessening it.

So, they don't believe me....meaning they aren't willing to give me anything to help me.

They will write me prescriptions all day for the tricyclics....but not for the only thing that works for me, which is Percocet.

It's like I can't get past their disbelief. Why won't anyone believe me that the tricyclics tear my bladder up like mad????

Blessings, Lori

[ICLori]

Hi, Chris - why do they do this? Why do so few doctors recognize IC pain as real pain???

Anyone got any guesses/answers?

Is it because IC has for so long been regarded as an hysterical disease all in our heads?

Blessings, Lori

[BLOORE74]

I hope u feel better. Where do u live? I live in Illinois & I have a great general doc, he's the one who gives me my pain meds. My uro won't give me pain meds either. I take demerol for the pain. I can't be w/out my pain meds either. I thank god for my doc every day! If u live close 2 Indiana that's where my general doc is, in Munster, Indiana. He's great. Also try the ic association, they have a list of docs for us. Hope u feel better! I wish all our docs could feel our pain, I bet they'd give us pain meds then!:biglaugh:

[ICLori]

Thank you, sweetie! What a great idea, I will check the ICA and see if there are good docs who would be willing to help me with my pain!

God I sound so much like a heroin addict or something, like "i gotta have my fix."

It's just that I've reached my psychological limit of how much pain I can endure. It's like part of my mind is just saying, "no more, no more, I can't do it anymore."

I will go now and check the ICA! Thank you!

Blessings, Lori

[windwalker]

I hope you find some info from the ICA, I am sorry the elavil makes it worse. Its just horrible how some get it in their heads that if it works for one, it must work for all, thats just not how IC works. I have u in my prayers and please let us know if you find help.
Dawn (((HUGS)))

[crystilclear]

I don't know why docs are like this. The last time I went in there they treated me like a drug addict and like I was trash. I didn't even ask for meds. I said I was in a lot of pain and he interupted and said don't think I'm going to perscribe you any until you see the Rheumatologist. I hate it. I am flarring or something. My body hurts all over. Last night I went to put lotion on and as I rubbed it felt like my skin was on fire. I feel like someone beat me on my lower back and behind my shoulders. Sorry I'm frieking out. I guess I should post this spew in the venting section. Sorry ladies. I feel like crying. I hope you will take care of yourself and your little one. Take care everyone. - Chris

[BLOORE74]

I hate the way docs treat us! Just like u said like we're drug addicts, do they really think we LIKE being in pain all the time!!! Seriously, like we like calling off work all the time, canceling things cuz we're too sick 2 go out. I'm so tired of that, like I said be4 my general doc is the only one who gives me my pain meds. He says don't these other docs have "compassion"? Usually when I see him i'm holding myself in pain. Cuz I can't take my pain meds & drive, I have 2 wait till I get home 2 take them, he sees how I am & he said nobody can fake pain like that! I love him! I don't know what I would do w/out him! When u find a good doc u stick w them. It's hard 2 believe w/ all the new info on ic docs still treat us badly when it comes 2 pain meds.

[ICLori]

I think some of it has to do with the DEA pressure on docs not to prescribe narcotics, certainly not large amounts of them or more than just one script for one patient per year or something like that.

If you read up on chronic pain and undertreatment of pain you will see it's not just us, it's a huge, huge, huge problem. Most people with chronic pain get treated like us - either we don't get any meds, or we don't get enough to treat our pain, and either way we are treated like scum.

Every time I see addicts on Dr. Phil or some other show I want to say "thank you, addict, thank you very much for being the reason I have to beg God to let me die instead of getting the medicine that could rescue me from this pain. Is my pain worth the high you got? Sure hope so...."

Blessings, Lori

[ICLori]

BTW I couldn't find any doctor recommendations on the ICA??? Maybe I wasn't looking in the right place?

Blessings, Lori

[codyryonwoodward]

I fully and completly understand where everyone is coming from. My problem is I no longer have insurance and I have to see the urologist at our local charity hospitial, which by the way is a teaching hospital for new uro's. Anywho I had an interstim put in 2001 and the last time I went had it reprog the uro then, the one who diagnose by IC, Would no longer prescribe any pain meds for me because all of a sudden the interstim was suppose to treat pain also and he stated" A new law prevents prescribe pain meds for 6 weeks after interstim adjustments." And by the way the interstim is not working because of toe curling and shocking me sometimes before a bowel movement. And b/c I no longer have insurance this dro no longer wants to help me, which brings me back to the charity hosp. I am having to wait till Oct when the new female uro gets there b/c the others are do not know alot about IC.....a gee thats a teaching hospital...BUT i am thankful that at least its tee to use when I know alot of places do not have them.

They also just want to treat with elval, anti depressant, and atarax. bladder spams etc....Which those also do not help me either. The charity hospital is not allow by their chancellor to write any narcotics scrips until the new female uro gets there.
But thankfully the only person I can get my pain scrips from is my gyno. He knew I had IC before any of the Urologist would even listen to me. I have had it for atleast 8 years. He will write me a scripe fro 15 Lortabs at a time. I try not to call for a refill every 3 to 4 weeks because he has always been so good to me. But I do run out and try just to stick it out. I know for certain it helps my bladder they seem to calm it down and then the pain and the urgency and frequency is not as bad. I go to the bathroom 35-40 x a day and 4 to 5 at night. And I agree people look at you like you a drug addict BUT there is a difference in taking a pain pill to help your bladder pain then to take the pill to just fill the high and using it only for that purpose only AND WE ICERS ARE NOT LIKE THAT..... Sorry for the long message but it is so irrating for people to think that :angel:

GOOD LUCK TO ALL
Patricia

[plaedes]

i just had an appointment yesterday and changed some of my meds around because of all the pain i've been in. i was on Elmiron 400 mg/day, Atarax 10 mg/day and he upped my elmiron, added elivil, pyrium plus and another heparin instillation. i told him that i had been getting hydrocodone from my mother and taking those only when the pain was really bad. he told me that studies have shown that at least some of the most common meds used to treat symptoms of pain actually make your other IC meds less effective therefore making things worse in the long run. i thought that was interesting, but who really knows how valid that is. I mean one day eggs are good for you and the next they aren't. carbs are good then they're bad. i'm tired of trying to keep up. i eat what doesn't make me sick and hope my pills work the way they are supposed to and call the doctor when they don't. good luck though. life on the couch really gets old!

[Krowe5656]

Hi Lori:
There is nothing more scary than to think about having to live 24/7 in pain w/out pain medication. I know exactly how you feel. You're so not alone in that regard. I've tried just about every IC treatment there is to no avail. My "old" docs dumped me because of the controversy around pain meds. Esp. Oxycontin< which has become a very bad word to even think of let alone say to a doctor. I am now left w/just one doc and he's been fair for the interim but has said he won't help me beyond a certain date. I'm supposed to see a new uro, 2hrs out of town and I am praying every night w/all the faith in my soul that this uro is compassionate.
I myself have been calling lawyers. I also contacted the Board Of Licensure for Osteopathic/Medical Doctors. Someone from that office is trying to help me and I hope advocate for me. Maybe you should look for someone to advocate for you too! I guess we've gotta fight the fight or no one else will.
I'll keep you in my thoughts and prayers! I know how you feel and wish I could help you. {{{{Lori********
Best Regards,Kara

[Morgan Stone]

I sympathize with all of you ladies.. this is such a hard thing to deal with. I was very fortunate to get into a pain clinic a few months ago that has dealt with my pain pretty well. A couple of you mentioned lortab and I wanted to post what my Uro told me about it so look for the hydrocodone vs oxycodone thread for more info :-)

[ICLori]

It is a real shame that those of us with this pain, which is known to be greater pain than the average chronic pain sufferer deals with, are forced to live in pain or desperately run from doctor to doctor for help.

What is WRONG with the medical field? What is wrong with our society that we are not giving those who are in so much pain, relief????

Blessings, Lori

[Krowe5656]

:confused: What's wrong with these doctors, you ask?? Well, I think that just maybe the "Hippocratic Oath" has now become oh so very 'Optional' among "recent" medical graduates!
Uh, uh do you swear by whatever you hold most sacred, to do No harm?? Uh, well... sure, as long as it means to first do no harm to myself, then if I'm okay, I'll consider treating my patients with uprightness and honor, to be generous and keep what is not fitting to be spoken inviolably secret and last to do no harm... sure I suppose I'll swear to it in that case.
Seriously though ... I just feel like doctors these days would rather not be bothered by all the paper work they must do in order to prescribe the medications we need to live some semblance of a "normal" life. Not to mention that making 91 cents on dollar and 89 cents on the dollar through Medicade and State insurance like Mainecare isn't enough for them to justify all the paper work they must provide ins. co's, the DEA and such places with, because gosh forbid drugs need to be accounted for various reasons. I mean the "private sector" pays $1.39 to doctors and because of this 91&89 cents isn't worth their time? My gosh I thought they were complaining because they only got like 30 cents on the dollar. Oh my gosh, pleeeeaaaassss! Where is the humanity?
Maybe the Hippocratic Oath should be made law and not kept as just some sort of standard of care by which doctors can pick and choose when they want to uphold? Obviously the "Standard of care" isn't working. Being a doctor is a powerful position and with such power comes particular obligations. However, one must row through an ocean of crud before one finds a doctor who respects their position and is true to the word of the oath they spoke. I suppose such an oath is left open for a docs personal interpretation and this is where people who continue to suffer fall. If we don't expect the medical field to stand up to the very oath which has been at the heart of healing since the 4th century BC then they will continue to walk all over us. I know there are a lot of good doctors out there and bless their souls. however, I've been in pain 23 years and I have never seen such a generalization and lack of compassion for people in pain.
Okay, I'm off my soap box now. Urrrg, I'm afraid my feelings about this matter may have run amuck. I can't help it though because it's just a lot more simple than what it has become.
Thank you for listening. I only meant to say a few words. LOL
Kara

[mayray518]

I think there are a number of pain clinics around now that treat IC. I can remember begging for something to ease the pain in 1993 and I was told that "I was a secret drug addict and was putting on a good act." I reminded that jerk that I had been employed as a paralegal for 17 years and could not possibly do that job under the influence of narcotics. We really do have horrible pain probably as much as cancer patients but we dont get treated as such. I have heard of some people on morphine derivatives due to IC. I guess you just need an understanding pain management specialist. I know uros will give you nothing for pain.

[Pain_Man]

I've had IC since 1991-2.

I had only intermittant pain meds which to get almost always involved begging doctors in tears--sacrificing dignity out of desperation. I've learned a lot about women's pain from this disease. I don't claim "sisterhood", only a greater understanding of pelvic pain and the embarassment and indifference of the establishment. If that's what it's like to be an oppressed minority, then that sucks.

Without meds from a patient with legitimate medical need is not only insane IT IS ALSO ILLEGAL IN EVERY STATE IN THE UNION. Every state medical board requires that every patient be given care appropriate to their condition/need.

Refusing to give some who is in pain palliative care is flat out malpractice. I'm not a lawyer, so maybe legally, it's fine. Morally, in my opinion, it's malpractice.

Some of this may have to do with fear of aggressive state Drug Cops. The Feds have become much more intelligent about legitimate narcotics use in the last ten years, to their credit. Some states, however, have not. I won't name names--not having direct experience it would be unfair to possible slander some good state's names--but some of their state equivalents are much more aggressive and obnoxious and keen to give doctors headaches and harrasment about prescribing "too many" or "too much" pain medicine for patient x.

That's one of the reason Pain Docs popped up. Their staff is specially trained in handling the voluminous paperwork

(And everyone in this country should know that your medical records can be seized WITHOUT A WARRANT OR YOUR KNOWLEDGE from your doctor at ANY TIME.)

required for the prescribing of Schedule II drugs (see another post I did on the 1970 Drug Control Act that still governs us today in this area).

But, regardless of ALL that, for a doctor--especially for a doctor in a rural area where patients will have to drive sometimes hundreds of miles to reach the appropriate specialist--to without proper treatment is ALWAYS illegal under any circumstances.

If a doctor no longer wishes to treat you, he can't simply drop you. Depending on the state the procedure varies, but it almost always invovles a certified letter to the patient and period (the time varies usually from two to four weeks) to find a new provider. Just "dropping" you is also illegal.

Both acts are ground for lawsuits as well as administrative action (hah hah hah on that one, doctors punish each other about as often as lawyers do) against the physician in question.

Many state Med Boards have arbitration units to help solve issues between doctors/patients. You should contact the one in your state (if it has one) before going "Medieval on his ***").

Good luck and God bless. There's no reason on this Earth why a patient should have to drive 100 miles or 200 miles just to get painkillers cause the doctors too lazy to do his paperwork.

Fight the stupidity!

[Pain_Man]

"Just because I'm paranoid, doesn't mean they're not after me."

--Woody Allen


....that my statement about the DEA's power to seize medical records without warrant or notification ONLY applies to patients who've been prescrived a Scheduled medication (as determined by the Federal authorities under the 1970 Controlled Substances Act).


Didn't mean to have everyone thinking ALL medical privacy had disappeared (just most). Your boss, for example, if he pays for your insurance, has a right to know what he's paying for and why. Nice, hunh? Hopefully some states have laws against this, but as of '94 the country's most liberal state, California, had not such law.

Something to think about (just as you should be keeping every Schedule II bottle you've got just in case...)

[blue]

I just want to give you guys a little encouragement. There are good, compassionate Dr's out there. My Urologist is wonderful, he doesn't talk much but, he's compassionate! He listen's to my suggestions and, that means alot to me!

I know Insurance Companies make it hard. We should be able to switch Dr's when the need arrises. If our Dr. isn't standing up for our rights, we should be able to go to another.

I think our problems are more with the Insurance Companies that put pressure on Doctors!

[Pain_Man]

Blue:

I didn't mean to depress people. I have a wonderful uro--who was instrumental, if not indispensible, in my succesful SS disability application. And believe me, as a conservative, it was one of the hardest things I did.

My pain doctor is also general practioner (who, God bless them, only charges me as a GP patient) and we have a great relationship. He's an osteopath and he's an expert in Chinese medicine (his parents escape from Mao's killers after '49) so he's very open minded and very thorough. He also spends as much time as the patient needs (he refuses to sign on with any HMOs).

But I live in Clark County, NV which now has over a million people. We have, for what reason I don't know, a lot of good doctors. Some real jerks, but there are lot of different choices.

Something people in rural areas don't have the choices I do.

What do you do if the next pain doc is 150 miles away or something? And I was complaining about driving 25 miles!

It's taken work and some atrocious treatment by one pain doc, but I've found the MDs I need.

It's the $300 a bucks a month for insurance that kills us. Secure Horizons here I come! Especially since Oxycontin is now generic.

[ICNDonna]

I also have caring physicians --- both a primary care and a uro. There are more good ones out there than bad.

Donna

[Krowe5656]

I am sorry if naming the state i live in was an ignorant thing to do. I have done a lot of research and what i said wasn't anything which hasn't already been said in local papers and the 6'o'clock news. However, i'm sorry if it wasn't the right thing for me to have done and i didn't mean to offend.
I'll try to be short as possible. approx. 4 yrs ago all my docs dropped me (and other patients of theirs) and left me w/no where to go for help. after about 1&1/2yrs i found a "pain doc". he agreed to tend to my pain. i didn't know at the time it would come w/a cost. this doctor began to treat me with emotional blackmail, threats, sarcasm, he would lie, make promises and break them and give hope then take it away.
Last nov. i had a chance to start my own business again. i told my doc about it and he at last seemed to understand and care. he atually promised me if some test he wanted to give me came back negative that he would increase my meds so that i could return to work and become independant again.
All the test were negative. i called to speak with him but he was never in the office or was on vacation. my meds came due and nothing changed. he managed to avoid me until this june. i lost the chance for my business and a huge contract offer.
When i saw him this past june 16th i asked him about the meds. he gave me one of his fav. things to say: "well, i'll have to put you into the hospital, take all your meds away, see how you do, then maybe add a little back, see how you do and run blood test, urine test and other such test to see how you metabolize. ?? anyway, he then began to say that "they" have found that you can take away a persons medications altogether and sooner or later they learn to live with it.
Well, i began to cry so hard i had to leave his office for fear my big mouth and painful bladder got me into hot water. i called his office when i calmed down and he refused to speak with me. his nurse told me he let me go because i refused to take a urine test in his office. this simply was not the truth. currently he has left me with no medication. he refused to help me for just one month. my meds were due june 28th. my mother also goes to see him and she called about her meds today and she was told by the nurse that he would no longer give her breakthrough medication and he was on vacation so her appointment for aug. 5th was cancled and he left w/out writing her long acting rx. ?? nice huh? my mom is in terrible shape and i feel like it's all my fault. this doc just wore me down. i couldn't hold the tears back.
From what i understand he has the right to do whatever he wants and for any reason he sees fit. it's only a "standard of care" by which he is supposed to continue "care" for at least one month. he's not bound by any legal terms.
One time, he was treating my mother so horribly that when she saw her "GP" in the same office she asked about a differnt pain doc. well, he caught wind and when she went to pick up her meds he refused to write them because he had heard she was looking for someone else to care for her. she was forced to beg and do a little dance before he agreed not to "fire her as a patient". he then told her that he better not ever hear of her asking to see a different pain doc.
Sept./03 i began to write letters to the "doc board" and so my troubles w/him are well documented. i have filed a formal complaint and the head of the board seems interested in helping. however, there is nothing he can do about my pain reliefe, of course >> bummer. but oh well i guess this is what i get for thinking i had some hope for a better life. i suppose i should have known better than to think he was going to really help me. i just pray he isn't taking things out on my mother. my physical pain is nothing compared to hearing my mom cry in pain and fear and knowing i can't make it better for her. i love her so much she's everything to me. she's always given more than she's taken.
Anywhoandhow, i am sorry if mentioning the state i live in was the wrong thing to do. i am in so much distress right now that i'm just not myself.
Sorry,
kara

[ICNDonna]

I suggest you get on the phone and begin calling doctors until you find someone who treats IC and is willing to work with you to find something that will help.

And I also suggest you pursue reporting this doctor to the medical licensing bureau in your state.

Your local county medical society might be able to offer you some help with a referral to a doctor.

Just don't give up. There are many fine caring doctors out there.

Sending encouraging hugs,
Donna

[crystilclear]

Oh Kara,
I am so so so sorry that you're being treated that way. :cussing:
:( You both don't deserve to be treated so horribly. I hope you find a good caring doctor that will help you. I wasn't offended by anything you said hell I'd be furious in your situation too! Take care - Chris :kiss:

[Krowe5656]

Crystil&Donna:

Thank you for your advice and kind words. I have an appointment July 22 and mom has one Aug 13 with doctors who are gyno/urologist in Bangor which will be a painful 2 &1/2 hr. ride north. Ugg but at least I have heard that they are good doctors. I've heard that before about other docs but trying to be positive about the situation. One day at a time or an hour at a time.
When my pain was being controled. I was going to college full time or more, working and playing sports. Now I'm just a shadow of my former self. I try to tell these docs all I want is to live life to the fullest and to have the same rights to pursue happiness and such. I feel at times like some docs feel like I'm trying to cheat lifes little aches and pains and that they don't understand it's much bigger than that. If I was "getting high" on pain meds would I have a B+ average in college, work and maintain a home as well? I dunno I just don't get the "one rotten apple" mentality. Why throw the baby out with the bath water? I know life isn't fair but hey this thing with keeping medicine from people who need it is just crazy.
I am writing letters, emails and making phone calls to everyone who should and will listen. The medical board should be sending me a formal complaint form this week. However, until I find an other doc to treat my ic, endo, etc. pain I am afraid of being "black balled" by the medical community. I know it sounds like stuff from TV but when does life imitate art and vice versa?
Again, thank you for your kinds words.
Best Regards
Kara

[Pain_Man]

That's unbelievable!!!

No, actually it isn't, as those who've read my posts know, I actually had a Pain Doc threaten to write a fradulent letter (i.e. commit perjury) to Social Sec telling them I was a phony and not disabled at all (although HOW he was going to explain prescribing me Valium, Oxycontin and Levorphanol I don't know).


But he actually did it. And THAT was after refusing to write a simply letter describing my meds and what other serious disease they're used for. (I was told this would help with the determination people for SS disability.)

He went nuts. Started verbally abusing me. Telling me I was a phony, wasn't disabled. He was so angry and belligerent that, had my then three yr old daughter not been there, I really think he'd have assaulted me. In someways, I wish he had. :o)


I flat out refused to pay him for the visit.
I said, "You only get paid for rendering medical services. You rendered none today, you get nothing." That's when he made his threat.

He also had the b**** to send me a bill! I sent a letter write back telling him that if I EVER heard from him again I would file complaints with:

a.) State Med Board
b.) Both of his Professional associations
c.) the insurance company*

*Most insurance companies will drop a doctor who generates too many complaints.

The upshot? Haven't from him since. You see, it would cost me nothing to file these complaints. He would have to hire a lawyer (200-400 dollars an hour), take time out from work (costing potentially thousands) to defend himself.

Here's the weird part: he actually DID write a letter not just about my meds but, after a lot of nasty falsehoods about me personally, concluded the letter by stating that he believed I am disabled and should get the benefits. The guy's nuts. I've heard from other people that he's pretty regularly behaving like that. How do these kind of people get Medical licenses? To be a cop you have to take Psych exam. To be a doctor all you have to do is pass a test. Sound odd to you?

That's how you get their attention: threaten to hit them right in the wallet.

Because while it is true that some doctors--especially GPs--suffering from reimbursement cuts, many specialists are making BIG bucks. My old uro had a $10,000,000 a year practice, for example. (Having treated 1000+ IC patients in fifteen years, he's a nationally recognized expert.)

Do NOT let him get away with this. Complain to your insurance, all of his professional organizations, your local TV news reporters, newspapers.

Go all out and hang this jerk out to dry.

Who trained this clown, Mengele?:toosh:

[Krowe5656]

pain_man:

Thanx for the support! I am just became so tired of his threats and emotional abuse. He wore me down and he did it on purpose! I have written to the State Board about him and am waiting for a complaint form to be sent to my house.
My mother just called crying cuz she has to go see him tomarrow. My gosh, she's so scared of him she gets upset days before knowing she must see him and then she cries the night before. Hearing mom cry is worse than IC pain and ya'll know how much that hurts.
Good idea about the papers and news and stuff like that. I've got a friend who dated one of our most popular news casters and they are still friends so, maybe I should ask him to call her and see if she would do a story about IC.
I'm so tired and hungry I should go ... can't eat or sleep though. Well, thank you for your kind words and support.
Night night
Lv, Kara

[johnnarees]

I was wondering if you or anyone have been given a rescue? It consists of 16cc lidocaine, 3ccs of sodium bicarbonate, 5 ccs of normal saline and normally heparin, however, my dr uses 2 of my elmiron capsules instead of the Heparin. They insert it with a catheter and I have to hold it for 15-20 minutes. Your bladder goes numb. I go in 2 times a week for this. If it get bad I go in for more. Plus I get pain meds, elavil, hydroxyzine, zyrtec, oxytrol patches, and oxybutinin. I notice everyone talking about remission, my doc talks about total healing.

I would find a new dr.

You need to be on an ALKALINE DIET. Type that into your search engine and you will get all kinds of info.

I also live on a tea called "ALKALINIZING TEA" it is made by "BODY RESCUE." It suppose to have a flavor, i doesn't, it tastes like water.

good luck

[carlav19]

Hi Lori and others-

I just want to say that I too, at one time, thought that I could no longer take the pain. I cried and cried, went to the emergency room (by the way, never go there for IC problems...they don't HELP you), and asked why me...it's so unfair and how can I live like this? After years of living w/it, though...I HAVE learned to manage IC. I take my uristat (you can get this stuff at Walmart, walgreens, other pharmacies) when the pain is too much (ie.Flares) . At least w/this stuff I don't have to wait for a Dr. save me from my pain. And I drink lots of water. Don't under estimate the power of drinking ( i mean chugging!:) lots of h20. I still have constant pain...and yes, it is constant, but usually faint and tollerable. I havn't yet tried the other drugs you all speak of.
Speaking of drugs, I want a Dr. to invent a drug that would be in inserted through a needle directly into the wall of the bladder. This way the drug would be right at the source of pain. The area where there was once pain is numb. You don't have to worry about getting wusy, flighty, or high on it. Just like when the dentist puts that numbing syrup into your mouth so you won't feel the drilling.

Anyway...just a thought for you Dr.'s out there! :)
Carlav19