Why do doctors drop pain patients?

[icnmgrjill]

I received this PM today and I think it's worth talking about. Thanks to Susan for raising this important issue!

Jill,

First I just want to let you know that this site is a godsend. The support on this board is amazing and everyone is so willing to listen and offer advice--it's been so helpful.

What I'm actually writing about is a post I saw under the pain management area. One of the members "momw/ic" posted a message about her pain doctor dropping her and how a lot of urologists and pain doctors are posting that they won't treat IC and chronic pain patients anymore. This is an outrage and I have a feeling that may be happening to me too. I called my pain clinic to get a refill on my meds and I was told to call my pcp. My pain doc was on vacation and no one else would help me or tell me exactly what was going on and I just am worried about it.
The thing is something has to be done about these docs dropping and refusing patients! We ICers didn't ask for this and can't help what we have. We deserve respect and help just as much as anyone else. My father had cancer he is in remission now but the cancer had gotten in his bones and his back hurts from it and he has never once had any problems getting pain meds for his back. why are we treated like addicts just because we have IC?

Sorry to get on my soapbox but I'm just angry and outraged. We definately need to figure out what to do about this. I was hoping that you being so involved in all this you might have an idea of where to start.

Thanks,
Susan

You ask good questions.
There are several reasons why doctors are cautious.

#1 - They worry that if they prescribe to many triplicates (i.e. opiates), that the FDA or their state Bureau of Narcotics Enforcement might prosecute them. This DOES happen and it is a legitimate fear. We've had several cases here in California where doctors were held accountable and even faced murder charges if a patient overdosed.

#2 - They may incorrectly believe that chronic pain patients can become addicts, despite the fact that all research studies verify that this doesn't happen. An addict takes pain medication to escape life and their personal responsibilities. A chronic pain patient takes medication so that they can be functional and live their lives fully. Unfortunately, if you have previous addictions, it is more complex.

#3 - They do not believe that the pain of IC is as intense as someone with cancer. It's important to carry around some articles or, better yet, The IC Survival Guide... which has an awesome section on the pain of IC and the use of stronger pain meds.

#4 - They may become frustrated with patients who do not take responsibility for pain care. For example, I know one patient who drinks several cups of coffee a day, and takes pain medication throughout the day. She refuses to reduce her coffee intake even though it could dramatically reduce, if not stop, her pain. When I chewed her out on the phone out of pure frustration, she said "I'd rather have my coffee and pain meds than be with my family." Pitiful and completely self absorbed and, probably, quite depressed.

So, it's a complex issue. I would suggest that you "google" the term "pain patients bill of rights" so that you can see the legislation that has been passed, or is in the process of being passed. Knowing your rights under the law is important. Again, here in California, we also had a doctor sued because he did not provide proper pain care to someone who was dying and he lost. So, there have been good legal cases too.

Furthermore, it's also important that you build your personal skills so that if this does happen, you have many things that you can do at home until you find more care. For example, every pain management program includes extensive relaxation training to help keep the muscles nice, pliant and relaxed. While patients can easily discount this idea, it is of critical importance.

Relaxation is to pain control what diet is to IC. It's the foundation for care.

Hope that helps!

Jill :)

[Carol Junco]

I do not understand why we, as participants on this wonderful website, can't start getting together a list from all those people on this website who do go to good pain doctors or clinics who compassionately treat IC and start making a list so the rest of us can possibly contact or see these doctors or go to these clinics. I myself was going to Dr. Brookoff, who as we all know is the best, but I have had to find another doctor because he only can see you if you come once a month. I have an appointment with a doctor in Rochester, NY in 3 weeks, so I don't know what kind of treatment if he will give or how he feels about pain medicine, but I think it would be a great idea if we could start compiling a list from all those ICers who have good pain doctors/clinics and their locations. I read so many terrible stories on this website of people in pain and hurting, and it just breaks my heart because I know how they feel and I feel so helpless that I cannot help them or refer them to someone good. I would like to know if everyone thinks this might be a good idea to start up a list of compassionate IC doctors/clinics and might help some of us who have lost doctors or are in the process of losing doctors

Carol Junco

[blueyedgirl]

Hey Everyone!

I posted on here before that we need to do something about the way we are treated as IC patients and we also need to educate the medical community as well as the public about IC.
So, the first thing I would like to do is get some info from my fellow IC sufferers. I set up an email account on yahoo. I would like it if people would email their stories especially people who have been dropped by their doctors and who have had problems with the medical community. Also, let me know what kind of changes you feel should be made in the treatment of IC and what information you feel is most important to get out there. Thank you for your help. I plan to compile the information and in the meantime try to figure out the next step. Any advice there will be appreciated as well.

The email address is icactivist@yahoo.com
You don't have to identify yourself in the email and you can keep it as anonymous as you want. Thank you again.

[curlycue]

All I have to say is WOW, what a great subject.

[armslee]

Jill brings up a very good point about relaxation and pain control.

I am currently in waiting for an appt to the pain clinic. I was told that it could be as long as October before they could get me in. As this isn't acceptable to me, I have begun counseling with a psychologist who is working with me on relaxation techniques. I also do yoga and have started using valium suppositories with some success.

Alternatives are out there...we just have to be eager while we wait and learn to utilize what our therapists can do for us.

[Jane J Prichard]

Where can I find the IC Survival Guide?

[Carol Junco]

I bought mine from Amazon on line because it was cheaper , but you could also get it through the Intersitital Cystitis Association.

(You can also support this website by purchasing this from the ICN shop at: http://www.icnshop.com. We ship within one week, rather than the many weeks it takes from other providers - Jill )

[mayray518]

At least doctors are recognizing that the pain of IC is agonizing and are referring ICers to pain clinics. When I got IC in 1992 I was told "I just wanted drugs" and "I would have to live with the pain." The doctors I saw gave me nothing. Its too bad you have to wait so long for an appointment.

[Lyn40]

I agree with Carol. (See below)


good idea to start up a list of compassionate IC doctors/clinics and might help some of us who have lost doctors or are in the process of losing doctors

I am looking for a pain center/specialist who has had experience treating IC pain in the philadelphia area, preferably chester county :help:

Lyn


--------------------------------------------------------------------------------

I do not understand why we, as participants on this wonderful website, can't start getting together a list from all those people on this website who do go to good pain doctors or clinics who compassionately treat IC and start making a list so the rest of us can possibly contact or see these doctors or go to these clinics. I myself was going to Dr. Brookoff, who as we all know is the best, but I have had to find another doctor because he only can see you if you come once a month. I have an appointment with a doctor in Rochester, NY in 3 weeks, so I don't know what kind of treatment if he will give or how he feels about pain medicine, but I think it would be a great idea if we could start compiling a list from all those ICers who have good pain doctors/clinics and their locations. I read so many terrible stories on this website of people in pain and hurting, and it just breaks my heart because I know how they feel and I feel so helpless that I cannot help them or refer them to someone good. I would like to know if everyone thinks this might be a good idea to start up a list of compassionate IC doctors/clinics and might help some of us who have lost doctors or are in the process of losing doctors Carol Junco

[Trishann]

I don't have the answers but it is breaking my heart to see the people's writing here and they can not get help to control their pain. That is so cruel. I hope this is not happening now, doctors and pain clinics turning their back on people who need help with their IC pain. Only if they knew the daily pain we fight daily.

Hugs, Trishann

[marshmel]

I think we all want and deserve compassion from our doctors, I think this is a great idea. Just the other night I had an awful dream that my doctor was telling me of a law in effect and he could no longer provided me with pain medication unless I had cancer. Yes, it was a nightmare. I'm sure the dream is a result of my worry of not having pain medicine.

The support we find here is a blessing and helps us all get a goodnight's rest.

[charlialexander]

I don't want to be on pain meds, I want a real treatment, a solution, a cure, not just to mask this condition/disease/plague or whatever you want to call it. Current flare up has been going on for weeks, as has my menstrual cycle, feels like someone is sticking pins and needles into my bladder and urinary tract whether I'm sitting, standing or laying down. But still, I prefer the pain to the pain meds, I've seen the side effects of long term use and it isn't pretty.

The Cipro didn't help much this time, gave me some relief for about five days, then the pain came back, worse than ever. Sorry, folks, I'm having a very bad day, have altered my diet completely, no cokes, chocolate, etc. etc., tried all the otc remedies mentioned on the products page, none of them helped me at all, hope they help others and their money isn't wasted.

And yes, my physician isn't convinced that I have IC, even though she is familar with it, guess it's on to a urologist, hopefully one that is familiar with this condition and won't try to put me through a hysterectomy. Hope that everyone is having a good, pain free day, I can't help but think how sweet our lives could be if it weren't for IC. Maybe tommorrow will be a better day, hoping and praying it is for all of you....

C.

[Texas Baby]

Hey Guys,
I don't want to be on pain meds either, but right now besides diet what do we have? I have tried the nerve blocks, they help to some degree and the medtronic was a literal lifesaver for me until I ended up with a staph infection from a hard hit I took at the site. I have just recently startred the valuim suppositories (my doc is willing to try almost anything once if he thinks its safe). I have noticed some difference with those. But I don't tolerate any spasmotics well ditropan etc so I am looking into some natural herbage to see if it helps. I wish for all our sakes there was a magic cure out there but there isn't, so we do the best we can. I have been in a flare for 3 weeks now. I had a small rwmission but it's over.:pray: I pray one day for a cure for us all
hugs to all
Eva

[Ladyblade]

Carol,
I think a list of good compassionate doctors is in order. My heart goes out to those I read on here that are suffering due to a doctor that does not believe the pain is real, or just plain afraid to prescribe pain meds. I'm very fortunate to have a good Uro and primary care doctor that will prescribe me pain medicine until something better will take my pain away! However I am looking at possibly moving to Connecticut right off, but am really concerned about what doctor I can find that is on the same page as my current doctor. I'm sure there are others out there that are facing similar situations.
I say, yes we ought to get together a list. You have got a great idea :)

Lynn

[Texas Baby]

can I ask a question? Lately I have been having pain in my whole pelvic region , not just my bladder area. I am affected by standing and phsical movement that brings on pain. I am depending more & more on my pain meds which I hate. Does anyone else experiance these symptoms? I have a pretty advanced case of IC but have never had this problem before. I go see my URO on WED. As for PAin meds I hate taking them but I don't know what I would do at this point with out them . I pray every day for a cure Or at least to be an encoragement to someone else. :pray: I can do all things thru Christ who srtenghtens me!:angel: hugs to everyone!
Eva

[ihurttoo]

can I ask a question? Lately I have been having pain in my whole pelvic region , not just my bladder area. I am affected by standing and phsical movement that brings on pain. I am depending more & more on my pain meds which I hate. Does anyone else experiance these symptoms? I have a pretty advanced case of IC but have never had this problem before. I go see my URO on WED. As for PAin meds I hate taking them but I don't know what I would do at this point with out them . I pray every day for a cure Or at least to be an encoragement to someone else. :pray: I can do all things thru Christ who srtenghtens me!:angel: hugs to everyone!
Eva
Eva, Sorry you have been feeling worse lately. When I read your post and how you said you have had increased, pelvic pain lately that is in your whole pelvic region, and that the pain is worse when you move, it sort of makes me think it could be pelvic adhesions. Since you have had several abdominal surgeries, including having your gall bladder removed, and a hysterectomy, you are bound to have internal scarring, which increases the likelihood of pelvic adhesions. Just a thought! You might want to ask your Uro about this possibility when you see him/her on Wed.

I have also had many abdominal surgeries, (C-sect, 2 laproscopic surgeries, hysterectomy, exploratory surgery, bladder biopsies, endo and pelvic adhesions removed, etc.), The adhesions have been removed several times. Just one abdominal surgery can cause pelvic adhesions, and you have had at least 2 surgeries that I am aware of. Just a thought!!

One other possibility that comes to mind is that the IC and fibro combo can cause widespread pelvic pain. I have both, as you do, and when either one flares, it sets off a chain reaction and then the whole abdominal area hurts. If the IC is the start, then when my bladder tenses up from the pain, then it causes my fibro to join the party. It also happens in the reverse, if the fibro starts the process. This also can happen when I am constipated. (Like you, I also have IBS).

None of those muscles are isolated, so if you have pain in one area, it can radiate to the other muscles and cause them to engage too. It is just hard to say what is going on, when someone with as many diseases as we have starts hurting!!!

But whatever the cause, I hope that your URO is able to figure it out, treat it, and that you will feel better soon! I know it is miserable, but hopefully your Dr will be able to tell you which one is causing you all this trouble and will be able to make you feel better! Hugs, Amy

[charlialexander]

I think because of the pain we tense up and become less mobile, which in turn increases the pain, which makes us tense up even more. That's been my personal experience anyway, have been experimenting with different things this weekend, walking, skating, stretching, sitting in different positions to see what alleviates pain and what makes it worse. As I am in the throes of a four week menstrual cycle, I'm also having a major flare up of IC. Good time to experiment.

Sitting hurts me more than anything, I've been skating and walking all day, and the pain has been bearable, at times I've been pain free, but sitting down must put more pressure on my bladder/pelvic area. I've also found that the straighter I sit and stand, allowing the abdominals and spine do the work, rather than resting it all on my pelvic area, the less pain I'm in. Maybe it compresses the bladder when I slump, maybe the endorphines from the workouts mask the pain, maybe the back pain from holding up the au natural 34d's is worse than the bladder pain so I don't notice it as much, who knows with IC?

[Texas Baby]

Gals,
I had an MRI done last week naturally it showed zip. because I do also have a history of adhesions my prmary Dr. is sending me back to my general sugeon . it has only been 6 months since the last time they took those things out. they are a pain in the you know what. But I am still keeping my appt. with my uro on Wed. Just to be safe. Thanks for the support guys. Hugs all around.:)
Eva

[ICNLesa]

This is a great discussion! Doctor / patient relationships have always been a hot topic when it comes to the treatment of IC. Patient after patient has had difficulty finding a physician who will not only be responsive with the same urgency we feel....but will give us their complete belief and attention...AND prescribe medications and therapies that are appropriate for our symptoms in the time that we need them. On the other hand, I have spoken with many physicians who are frustrated because it's difficult for them to interpret what we are telling them....WHAT our pain or symptoms are exactly...what level are our symptoms....which medications are working, not working....what other lifestyle practices do we have that affect our symptoms. All of these things are factors and as patients we don't always know how to communicate them accurately.

I think over the years I have realized that I will not likely find a physician who knows exactly what to do and when to do it in regards to my IC. I must also admit that I haven't always been the best patient. I have been vague, confused, often short-tempered out of pain, unable to communicate ......just wanting someone to 'fix' me. Over time and with some work I now have a urologist that I KNOW and who knows me. I have not always been happy with him and I'm sure he's felt the same of me on occasion...but we have learned to communicate in a way that best serves us both.

I wish we could find at least one answer to our many healthcare problems. We so desperately need change.

[curlycue]

Eva,
I have the same problem. My pubic are constantly hurts I dont know why and this has been like this a couple of months, I was hoping it would just go away but I dont think it going anywhere? I have not seen a dr for it.Let me know what they say to you. Good Luck.

[Texas Baby]

well My primary feels like it is adhesions again. He is pretty good about working hand in hand with my URO. In fact anything my URO does he lets my primary know. In the beginning the first URo I had was horrible and I went to my regullar doctor for help. If it wasn;t for him I wouldn't have the URo i have now. And my regular doc likes to stay informed about my IC. After So many years of suffering I feel like I finally have someone to listen to to me. I wish all you fellow ICERS the same! GOD BLESS! AND LOTS OF HUGS :angel:
EVA

[momw/ic]

I believe it was one of my posts that originally started this thread. I had gone for my monthly appointment to my pain clinic to my same doc I have been seeing for over a year when out of the blue he said that he thought he should not treat me anymore because I keep having flare ups and am not getting any better. When I started seeing him he had several IC patients (so he said) and that he knew a lot about it but I have had to teach him a lot over the year. Anyway, he has been very willing with the pain meds and we together had found a good combo that was working well. So, I was totally shocked when he said that. Well, the next month I ended up taking one of Dr. Brookoff's transcripts that I printed off of this site and I told him about it and had him read it. It is the one that talks about as pain doctors whether they understand or have knowledge about a disease or not it is their responsibility to care for patients in pain. It is a wonderful speech he gave about not letting patients be in pain when all we need is medication etc... Anyway, that completely changed my doctors attitude. My next 2 appointments have been great and he has been positive about my refills and adjusting dosages if we need to etc... I also took my husband with me and will not go alone anymore - so he sees that my family is involved with my care and knows about the meds I take and my husband was able to tell him how even though I do have flare ups that over all the medications have helped me to have more of my life back because I am not in as much pain. I also take with me a list of every thing I have done that month to help myself that is not just meds. Like the number of bladder instills I had, how many days I used the heating pad or ice or hot baths - things like that. All of these things together have really seemed to make a difference. So, I encourage you to give it a try if you need to. There isn't anything you can lose anyway!

[Vicki]

Jill- I am one of those who has to have some coffee in the morning. I am curious what others do to get awake from the Elavil. Unfortunately, Elavil is the only med that helps me. So, I set an alarm on my cell phone that goes off at five daily to take it early so I stand a better chance of being able to get out of bed. I have twin ten-year old boys and it takes every bit of energy I can muster to keep up with them. Elavil keeps me groggy all the time. sometimes I have to get a cup before I pick them up from school to get through dinner and homework without falling asleep or chewing their heads off. It is such a struggle. I know the coffee is not good for me but somehow I have to stay awake. I wish there was a magic answer for me. -V

[Freckles]

Vicki,
My urologist almost choked when I mentioned I was still drinking coffee. I have to. If I didn't I would be in bed all day. I take about 35 mg of elavil every night and am almost comatose in the mornings. I do know that it helps me so I don't want to stop taking it. I take prelief in the mornings with my coffee and I do think that helps. Yesterday I was in bed all day because I just couldn't snap out of it. I do think many of the drugs I'm on help me, but I hate all the side effects. The worse effects I've had was from morphine. Now that was terrible. I'm on the duragesic patch and ultram now and that seems to be helping although my doctor needs to increase the dosage of my patch, but seems reluctant too. I'm sort of reluctant too as I don't know what's worse, the IC pain or throwing up. It's always something. ;-(

[ihurttoo]

Can I ask a question? Lately, I have been having pain in my whole pelvic area, not just my bladder. I am affected by standing and physcial movement brings on pain. I am having to depend alot on pain meds. I have a pretty advanced case of IC, but have never had this probem before. Has anyone else experianced these problems? I go to the URO on Wed. As for pain meds, I hate taking them, but dont know what I would do without them at this point. I pray for a cure for all of us or at least be an encouragment to someone else. Hugs to all!! Eva

Eva, Sorry you have been feeling worse lately. When I read your post and how you said you have had increased, pelvic pain lately that is in your whole pelvic region, and that the pain is worse when you move, it sort of makes me think it could be pelvic adhesions. Since you have had several abdominal surgeries, including having your gall bladder removed, and a hysterectomy, you are bound to have internal scarring, which increases the likelihood of pelvic adhesions. Just a thought! You might want to ask your Uro about this possibility when you see him/her on Wed.

I have also had many abdominal surgeries, (C-sect, 2 laproscopic surgeries, hysterectomy, exploratory surgery, bladder biopsies, endo and pelvic adhesions removed, etc.), The adhesions have been removed several times. Just one abdominal surgery can cause pelvic adhesions, and you have had at least 2 surgeries that I am aware of. Just a thought!!


Well, my primary thinks it's adhesions again!

I am so glad I steered you in the right direction!!! :) It makes me feel good to be able to help. I felt pretty sure that was what it was, just from your decsription of the symptoms, since adhesions cause pain on movement because they pull on whatever they are attached to. That is why I researched your past posts here to see if you had a history of abdominal surgeries. Once I saw you did, I felt pretty sure I was on the right track. Even though it took awhile for me to research your history, I am glad that I followed my hunch and took the time to do the research, even though I felt really bad that night. I am just glad that it helped! I am also glad your Dr. agrees and thinks he can help you. I hope you get relief soon! Hugs, Amy

[Ashelliak]

Carol-Please let me know how it goes with the doctor in Rochester. I am from central New York and, a lot of people keep telling me to try Rochester. I would love to hear how it goes for you. Please keep me posted!!:help:

[Ashelliak]

Littleva-- I too have pain all through my pelvic region. I too have extreme pain with standing, moving, anything physical. I don't like being on the meds either...but, I LIKE BEING ABLE TO WALK! Don't you??? These doctors do not understand what this is like for us!!!:bonk:

[Kara29]

Amy,

I know how it feels to help people who are suffering even though you are in so much pain yourself! It takes some real special people who are in pain themselves to take the time to post and research for others who are also suffering. There should be Angel Awards on here! :) I commend you for helping others here on the ICN! Thank You!


Love,

Kara :smile tee

[Kiki B.]

I go to Murphy Pain Center in Louisville, KY.

[Kiki B.]

How many of you with Generalized Pelvic Pain have been diagnosed with Pelvic Floor Dysfunction(PFD). I wasn't sure I had it, but I was blessed with being able to get an appt. with Dr. Deborah Erickson, a leading IC researcher at UK in Lexington, KY a couple days ago. I had noticed that I had pain all throughout my pelvic region, which was much worse with a flair, to the point that I would even have difficulty sitting. I also noticed I had sharp pains in the Lower Left Quadrant of my abdomen. Well, during her exam, she checked for PFD, and I had a very, very strong pain reaction when she tested the LLQ of my abdomen. She was able to replicate the pain I feel there, and that is was a result of PFD. So, now off to research that more, and to get some further treatment for it. She started me of Baclofen, which is a muscle relaxer that she said people have had good success with. I hope I do, too.

[ihurttoo]

Amy,

I know how it feels to help people who are suffering even though you are in so much pain yourself! It takes some real special people who are in pain themselves to take the time to post and research for others who are also suffering. There should be Angel Awards on here! :) I commend you for helping others here on the ICN! Thank You!


Love,

Kara :smile tee


{SORRY THIS IS IN ALL CAPS< MY KEYBOARD IS MESSED UP AND COMMAS ARE SHOWING UP AS "<" TOO :( **

ANYWAY< THANK YOU KARA FOR YOUR VERY SWEET POST!!! ALTHOUGH I HAVE TO SAY IF WE DID HAVE ANGEL AWARDS< IT WOULD BE THE LONGEST THREAD EVER AND MOST OF IT WOULD BE FROM WHERE YOUHAVE HELPED PEOPLE< DESPITE THE FACT THAT YOU HAVE WHAT IS UNQUESTIONABLY AT TIMES THE WORST PAIN HERE BECAUSE YOU COULDNT EVEN TAKE PAIN MEDS AFTER HAVING YOUR BLADDER REMOVED DUE TO REACTIONS< YET YOU STILL WERE HERE ALMOST EVERY DAY HELPING SOMEONE DESPITE UNIMAGINABLE PAIN< MANY TIMES HELPING THE SAME PEOPLE OVER AND OVER WHETHER OR NOT THEY EVER EVEN THANKED YOU OR CAME BACK TO POST HOW YOUR ADVICE OR DIRECTION HELPED!! I HAVE TO SAY THAT YOU ARE MY HERO AND MY HATS OFF TO YOU! YOU ARE DEFINATELY THE MOST UNSUNG HERO OF THE BLADDER REMOVAL BOARD AND THE ICN!! :bow:

[Texas Baby]

Gals,
I had never been tested for pelvic floor dysfuntion either, however, due to my past medical history and as well as adhesions, I had a long talk with my uro about it. since I had so many of the symptoms of the pelvic floor dysfunction also He told me that in all likely hood I probably did have it as well. In the seminar that Dr. Brookoff gave on line he had mentioned the valium suppositories. We agreed to do a trial run for 1 month and see if it made a differance. I am on day 16 an I must say that as far as sex goes with my hubby the improvement is about 50% so far. I am impressed. I don't feel drowssey from the valium due to the way it is delivered and I take it at night. Also those darn adhseions are gonna have to come out next month. They (doc) says there is a new knd of mesh that they can lay down so they don't come back as much . I am going to talk to come back because it has been less than that since my last surgery.
ON a good note I have been praying for quite a while for God to use me in some way since I am no longer able to work. I may thru my church and a few other individuals who have some experiance in this area ,be starting a support group for people with chronic illnesses. There is nothing like that in a city this size believe it or not and there are definatly no IC groups avalible here. I know at least 3 people with that. so Please pray that this works out. I think It would be a huge benefit to the community and to those who need it.:pray: Eva :)
PS Thanks for your advice about the adhesions. they just felt different this time!:)

[Texas Baby]

Gals,:woohoo:
One thing I forgot to add and probabbly the most important,I think that God has given Each One of You a Special Gift. Part of That Gift Is helping Each of us when we need it whether it be encouragement, a shoulder to cry on or an ear to listen . I feel so very blessed to have found this web site and to talk to you all because I know that I can share something that you understand and the same goes for you. You alre all special Made In His Image. Thanks for Always Being there for me! I don't Know you guys from adam yet you took me in and listened. that means a lot to me more than you will ever know. Thanks :smile tee
Hugs & prayers
Eva:pray:

[Kiki B.]

"I had noticed that I had pain all throughout my pelvic region, which was much worse with a flair"

Flair should read flare. Hee hee! Sorry.

[Lishypaz]

I am all for listing doctors who are compassionate and have a good track record when it comes to listening to patients' needs. Although my doctors have not always had all the answers, they are compassionate and are willing to listen and don't make me feel like I am crazy (which has happened to me in the past). I am from Jamestown, NY, midway between Erie, PA and Buffalo, NY and I have found the following doctors to be compassionate and knowledegable about my health conditions:

Dr. Liu--GP
Dr. White--URO
Dr. Campion--Gastroenterologist
Dr. So--OB/Gyn

They have all listened to me, pointed me in the right direction, and above all, they talk to one another about my condition so everyone is on the right page. I think everyone deserves this type of medical treatment--we pay a fortune and suffer through pain and humiliation and I can't imagine not having this team of doctors on my side

Good luck to all of you, I will keep you in my prayers.

[ICNDonna]

It's always okay to say something good about a doctor on the boards.

Donna

[Freckles]

I agree if you have great doctors, then you should let people know. I haven't had any good doctors in Tampa florida. Although I do really like my new pain Dr. His name is Eaten Yen. He is great. Although I am not out of pain, he has given me more help than anyone and takes the time to explain things to me. He is great.
K

[Freckles]

littleva, are you on disability? I'm thinking I will probably have to file soon, but to be honest, I don't know that I even have the strength to file the paperwork. This disease has totally exhausted me. Between having to deal with relatives who just don't get that I am sick, a divorce, the possibility of losing my house, etc., I am just drained and pretty much stay in bed most days. Can you please let me know how you did with disability. I really just can't believe at 47 I am going to have to go on disability. It breaks my heart. It just kills me. I feel so useless.
Karen

[Freckles]

Also littleva..... best of luck to you with wherever God leads you..... I'll keep you in my prayers. I'm thinking about starting a support group in Tampa as well. There is already one in East Tampa, but I live in North West Tampa and I am really interested in helping anyone I can. Of course it would help me too. I think we all need as much support as we can get.
Karen

[Texas Baby]

Freckles
Yes, I filed for disability and was awarded it the first time. also if you have any children under 18, they will give you a monthy stipend for them as well. no matter how tired you are I encourage you to fill out those papers. Do you have any other illnesses besides IC? I also struggle with FIBROMYALGIA, IBS, DEPRESSION, PANIC/ ANXIETY. I know that it seems like a huge and scary undertaking but, you have yourself to think about. I am so sorry to hear about your divorce! That just seems to make everthing worse.:toilet: I am hear if you need to talk. I will keep praying for you.:pray: E-mail me anytime (littleva@sbcglobal.net)and will talk more in depth about it if you want. Sometimes it helps to talk to someone who has been through the process already, so they know what to expect.Hugs:bunny:
On a different note My docs are awesome as well!
Eva

[Texas Baby]

Freckles,
Go to the Social Security web site. there are some forms you can down loa. Then you send them in. They will make an appt. and will ask you to bring in specific informationand ask you some questions. they will fill out forms while you are there and give you information. they will also give you a number to keep track of your case with and to see if it gets denied or appoved. Mine was apporoved fast , but it coul take up to 3-5 months.
eva

[Zygala87]

#2 - They may incorrectly believe that chronic pain patients can become addicts, despite the fact that all research studies verify that this doesn't happen. An addict takes pain medication to escape life and their personal responsibilities. A chronic pain patient takes medication so that they can be functional and live their lives fully. Unfortunately, if you have previous addictions, it is more complex.

#3 - They do not believe that the pain of IC is as intense as someone with cancer. It's important to carry around some articles or, better yet, The IC Survival Guide... which has an awesome section on the pain of IC and the use of stronger pain meds. Author unknown: Ziggy

[Freckles]

Do most people that have disability have the interstim or have their bladders removed? I'm just afraid they are going to make me do one of those to get the disability and I'm not ready for that yet. My symptoms are pain so I'm not doing the interstim and I'm not emotionally ready to have my bladder out.
Karen

[Elle]

No, you don't have to have your bladder removed or have the interstim implanted to receive disability. And, my personal opinion would be to definately do a lot of research before even considering either of those, since they both come with there own set of issues.
You can receive disability if your IC is severe enough. Most of us were denied the first go round, and many on appeal. Most who are approved for IC are approved at the ALJ Hearing level, which could take 3 years or more from the initial applicaiton. But, there are some who are approved with their first application.
The key to getting approved is to make sure you have everything documented very well in your medical records: be sure you have a clear diagnosis with the "appropriate" tests (like a hydodystention, for example); be sure that the pictures of your bladder, if any, and x-rays or lab work are clear about your dx; since pain is a major issue for you, keep a daily pain journal rating your pain and giving details of it's location, frequency and a description of it; also, keeping a log of your number of bathroom trips could be helpful as well; document how IC changes your life from the foods you can and can not eat to the activities you may no longer be able to participate in; also, have your Doctors write letters for you explaining your illness and the limitations it may cause; keep a detailed record of how much you're spending on medical and replated care b/c of IC; get those who see you on a regular basis, like your friends, relatives, former bosses or co-workers, etc to write letters detailing how your life has changed b/c of IC.
Unfortunately, it's such a long process for most of us who were ultimately approved. I would say, though, to apply as soon as you think you have to. I know how heartbreaking the thought of going on disbility is. I was in my 20's when IC hit like a ton of bricks. I'm now in my early 30's and was approved for SSDI earlier this year - not exactly what I had planned for at this stage in my life! (Or any stage, for that matter). But, things change, sometimes for the worse. All we can do is do what has to be done to take care of ourselves and our families and to try to live as full as we can with the hand we've got.
I'd be happy to answer any questions that you might have about SSDI. Hang in there! You will have better days ahead! :)

[evanseri]

Hi All :) ,
After reading several posts on this site (and dealing with it personally) about doctors who refuse to write pain med prescriptions or other helpful prescriptions I am beginning to become discouraged with our healthcare system. I don't mean to get all feminist or anything, but I bet if this was a disease that men predominantly suffered from the pain pills would be flying off the shelves from so many pain pill prescriptions being written. Actaully the disease probably would have been cured by now. Look at how many pills they have for erectile dysfunction and then compare that to the one pill (Elmiron) that is approved by the FDA for the treatment of IC. Its enough to make a girl crazy! :cussing: Oh well

As a nurse in Oregon in order to renew my license, I, as well as doctors, have to take a seven credit course on pain management. This I hope will be a positive step in the right direction for treating chronic pain. In one of my classes the reasons why doctors are reluctant to prescribe pain medications (all of the reasons listed in the first post) was brought up and discussed. They are trying to get doctors out of this fearful mode of thinking and get them to control patients pain better. The new thought (at least in Oregon) is that pain is unacceptable for any patient, and it is our duty as healthcare professionals to treat pain accordingly. I hope that this new way of thinking about pain control speads and we can kiss the days of lying in bed in pain good bye :hi:

Heres to hoping for a cure! Take care,
Erin:)

[Babs RN]

Erin,
As a nurse myself, it is promising to see the tide turning. Now, about the other 49 states...

Hugs,
Barb:smile tee

[Freckles]

You can bet your butt that if this was a mans disease there would be more in the way of a cure or understanding. I can guarantee that pain doctors wouldn't be sending male patients out the door with a pat on the back telling them it is just stress and to take a vacation. I actually had my second urologist tell me all I needed was a holiday in Hawaii to fix my bladder problems. Can you believe it? Think he'd say that to a man. NOPE

[evanseri]

Oh that is just rediculus because I have been on plently of vacations and guess what, I still have bladder problems. What does your doctor think, that IC is just a crazy neurotic "womans disease"? It really ticks me off sometimes.