My Pain Management Clinic Dropped me.

[Kara29]

Due to the fact that they had limited knowlege as to how to manage the phantom urgency, they can't help me anymore. I am off to find another pain management clinic or doctor. I am hoping due to the suggestion of a wonderful friend, I hope to get into a Neurologist, Or a Neurosurgeon. to find some answers.I will also be seeing a hormone specialist at the end of October. Finding the right pain management clinic these days is like finding a needle in a haystack. I will be going back to my primary care once again for him to pick up the pieces this clinic has left me with. They have me on two anticonvulsants that can't be stopped abruptly. Someone has to prescribe them to me until I find someone else. This clinic was making me do all of my own research anyway and that was not a nice thing to do. They kept telling me that whatever I found next to try, they would give it to me. I don't think this is right. They actually got mad when I said I did not want to take the Fentanyl again. It did nothing for me but made me sleep for 3 years straight and it took me 3 months to withdrawl from it. NO THANKS. Narcotics tend to make my urgency much worse. I am better off without them. It has been a rough couple of weeks dealing with this. I would like these doctors to actually do thier job the next time around. No one wants the patients that are sensitive to medications and have lots of allergies. I've tried so hard to remain positive around this situation but I broke down today and lost it. My OBGYN let me cry. I've been crying all darn day! I still am....

I asked the pain clinic, "since you gave up on me, does that mean I should give up too?"

I am so down.

Kara:help: :help: :help:

[Imustpee]

I saw a Neurologist last year when I had nerve pain on my thighs, felt like someone was throwing hot grease on them..he gave me GABAPENTIN 300mgs..it worked wonders..I was taking 1 in the morning, 1 in the afternoon and 2 at night, but now I just take 1 at night and it really works! Maybe you could ask about that drug if he/she doesn't bring it up? I was told it was favored because it didn't interact with very many other medicines.....good luck!:bunny:

[SusieQ045]

i am so sorry that happened to you. i had a similar experience and it can be very frustrating. there were days where i thought my life was just going to end and i would never find anyone to take my pain seriously. but i did and you will to. if you ever need someone to talk to pm me. i have had my share of crappy doctors and doctor mishaps. good luck.

[ICLori]

I'm so sorry - they really failed you. I know that you will find another pain management clinic, though - a better one! But I'm still sorry they let you down. :( It must have been such a miserable day for you.

Blessings,
Lori

[Ashelliak]

Kara- I am so sorry that this happened to you. It must be awful. You will indeed find someone else who can help you. Just jeep seaching. That is what I am doing right now too. We will find helpful people! It will happen for us Kara. Have you tried looking up any specialists that know alot about phantom pain? I will see if I can find something for you. I am again sorry Kara. Get ahold of me if you need to talk. Take Care-:pray:

[ihurttoo]

Dear Kara,

I am really sorry that this happened to you. Although I think that it has happened for a reason and you will be better off because of it, I know it hurts when it happens.

However, you ARE going to be better off now! First of all, you will be able to get a referral to a Neurologist. So far, you have NOT been able to do this, because your other Drs wanted the referral to come from the Pain Mgmt Dr and she refused to give it to you, claiming she knew as much as they did. We know that is a lie. We know that someone who is Board Certified in Neurology, did a residency and internship in it, and has practiced it for many years IS GOING to know more about than a Pain Dr! Now you can get a referral to one. You have needed to see one all along, since it is nerve pain, and also, since you respond best to anticonvulsants and a Neurologist would know more about them than any other Dr.

You are also better off without that pain Dr. because your other Drs will have to help you now, because they cant throw you back to her, since you no longer have a pain Dr. This is a good thing! Most of us with Pain Drs get pitched back and forth between our reg Drs and the pain Drs because each claims our problems are the other Drs territory. That CAN'T happen to you now! :)

It is also a good thing because as you said, you were having to do all the research anyway and deciding what to do next, not them! Since they did not have the knowledge to help you, and obviously didnt have the time and/or inclination to help you by doing any research at all, then you are better off leaving and going somewhere else, and you would have never done that unless you were forced to, since you are in so much pain and feel so beaten down. What happened today will force you to find someone else, and as far as I can see, that is a GREAT thing!

As I told you earlier, I know that it seems like a bad week, but you are actually WAY better off this week than you were last week. Because of the above, and also because you have new ideas to run with. You are going to get a referral and see a neurologist, and hopefully have the nerve-conduction test, and possibly get on a med that can do you some good. You also now realize that you very likely have adhesions and scar tissue from all the surgeries (since your pain is worse sitting and standing and is a pulling feeling) and know that you need laproscopic surgerey to d/x this and clean it out. You now also realize that IF you do have adhesions and scar tissue, if they are on your ovaries and or uterus, that could be another explaination as to why your pain is worse during your menstral cycles in addition to the hormone theory.

You also have a new opioid that you can try, that we found out about this week. Even though you would have to have it compounded, that is a med that is an option you didnt have last week! The other meds we found, although they are only available in injection form, at least those are now options for when your pain is intolerable and you are at the ER or in the hospital. I guess what I am saying is, at least you have more ideas to explore and options to pursue than you had last week!

Also, you have now found out about trigger points. Even if this med they gave you to apply to them doesnt work, at least you now know about trigger points and how they refer pain. There are other therapies for trigger points that might help, and those are also options that havent been explored yet.

Not to mention that there are tons of anticonvulsants you have not tried yet, and you seem to respond pretty well to those, for the most part!

I guess what I am trying to say is that no matter how bad things look, you have to stop and look at all the progress you have made.....just in one week! And the best is yet to come! You havent even seen the kind of Dr yet who knows about nerve pain! You also havent tried a nerve block after the urethrectomy, you have only seen one Endocrinologist (and need to see another one of these too, since hormones affect you so much!), also you havent had a recent laproscopy to rule out pelvic adhesions. Since trigger points CAN be in scar tissue, it is possible that yours could be in the adhesions and that is why you cant locate them. They could be referring the pain to the urethreal area. Who knows? But, at least you now have some leads to explore.

Remember your own signature line, "Never take I cant help you for an answer!" How true that is!

You have come a long way, but unfortunately you are going to have to go a bit farther. I wish you didnt, but you do! But, you are not alone, and you never will be. I am here for you, as are the other members here. We will get thru this together!

I just want to make it crystal clear to you that you DO have hope. That is all any of us have, but we all have that, and you have it too! And you know what? If we go through all those options above, and you are still hurting, do you know what we are going to do? We are going to find more! Because that is what we have to do! And there WILL be more options out there! How do I know? Because there always are!

I hope your pain eases soon and you are able to rest tonite. Love and hugs, Amy

[Imustpee]

Hi Amy....that's a very nice picture of you and your son...:)

[Imustpee]

Kara, I found this info on the ICA while surfing the web.....sounds like the neurologist may be the answer...I hope this helps....

CLINICAL STUDIES.... Some patients who undergo total cystectomies (bladder removal) still experience pelvic pain (phantom pain), indicating that neurologic mechanisms are an important aspect of IC not yet understood.

http://www.ichelp.org/TreatmentAndSelfHelp/Surgery.html

[ihurttoo]

Hi Amy....that's a very nice picture of you and your son...:)
Thank you. I hate all pics of me, but my IC buddies have been after me to post a pic, so Kara and her husband did it for me. (I am not smart enough to do tech stuff!) Thank you again, Kara and Allen!! And thank you, Lesa....now it is your turn to post a pic! Hugs, Amy

[Kara29]

Ashley, Lori and Susie, Thank you all for your continued love and support!

Ashley, I hope that we find a caring pain management team. If you find one before me, let me know! I am glad I am not alone here in Syracuse, NY. I'm not the only one who can't find adequate care.

Lesa, I just want to clarify if I may, the urgency is only located where the urethra used to be not anywhere else. I don't even feel the new bladder. I don't feel anything in my abdomen either. Just where the urethra was. Thank you for the link. That was nice of you.

Amy, that post was so supportive! I thank you from the bottom of my heart for being there all day for me today! Friends like you are so important! Allen and I are so appreciative to know you and we love crying and laughing with you. It's nice to know you are hanging with us into the long haul. It makes the road ahead less scary and more hopeful. Thank you for carrying me when I couldn't walk!

It was not easy for me to admit that I still suffer from urethral urgency after a total cystectomy and urethrectomy. It's embarrassing to go through all of the surgeries I have and to come out still having urgency.

I believe with the support of you all, that I will eventually get through this rough spot.

Thanks again to all of you for your encouraging words!

Love and Hugs!

Kara:angel:

[Ashelliak]

Kara - I think we need to move away from Syracuse..lol..You would think with the "University" someone would know what they are doing..lol. We are searching through a needle in a hay stack in this city...lol :lmao:

[ihurttoo]

Kara - I think we need to move away from Syracuse..lol..You would think with the "University" someone would know what they are doing..lol. We are searching through a needle in a hay stack in this city...lol :lmao:
I agree with ya!!! Come on down to Ky!!! Not that our Drs are any better, but at least I'd have 2 people in the whole state who have even HEARD of IC besides me, if you guys moved here!! LOL!! Besides, I need to borrow Kara's HUGE cats to kill my mice! Those mice would FREAK OUT if they saw Kara's cats coming at them!!!

[Katrina]

Although I am sure this is frusting and this road has been a ruff one I hope that this turns out to curve your path to feeling better in the right direction!! :grouphug: I totally agree that no one is going to know more about anticonvulsants than neurologists. Good luck!!

[Dixiefireball]

No Kara You never can give up!! You are the one who has to make a difference in your life. just because one gives up that doesn't mean that all will or that you should! Keep the fight going you have been so far and still have far to go!!!
love ya and still praying for ya.
Rhonda

[Kara29]

Rhonda,

I am trying to dig myself out of this hole. Thanks for the support! This is 5th Pain Management Center that has dropped me. When they drop you in the middle of a crisis and leave you cold on the street with severe pain and nothing and no one to help pick you up, it's really depressing. I promise I won't give up but this was a swift kick in the face after all of the empty promises they made me. Depression doesn't even begin to describe the mental pain I am feeling. Being in physical pain and mental pain at the same time is so tiring.

Love you too!

Kara

[ads]

Kara,

I am so sorry this happened to you! It probably won't make you feel any better, but the same thing has happened to me. Pain centers are many times in to making money and the kind of care you need to find the correct treatment takes a lot of clinical consultation time, which is hard bill the big bucks for.

When I was going thru the pain management process there was psychiatrist who specialized in pain management and billed it out as an hour of psychiatry. I have known a few other IC patients who have had luck with this type of care. He could see me once a week and watch my results/side effects closely, and the situation worked very well. Today, years later I am not sure where I would have been without him. He was a great facilitator and member of my medical team. It sounds like your clinic wasn’t even doing a good job facilitating, when they became upset because you wanted to quit the Duragesic patches. Perhaps, you are the best caretaker of your medical decisions at this point because you have spent more time thinking about your situation than any doctor you have ever seen. A physician who is a good facilitator and partner in your health care process can be a temporary answer until something better can be found.

I wish you the very best. I admire how brave you have been throughout your journey.

ads

P.S. I was impressed by your Blog page. Thank you for sharing your situation with us, so we can all learn along with you. You are giving many people strength and encouragement you don't even know exist.

[asn]

Dear Kara, I've been praying for you. I know that after all that you have been thru, you will find a doctor that can help you!!!

It makes me mad, to see that when doctors can't help you, they just throw you away, and at the same time they don't think on how you will feel later, emotionally it is like killing your feelings!!!!

But remember, you have a suportive family and friends that understand you very well. Don't feel that you have lost the battle, you will find someone that will help you, I'm going to keep praying for that, and for all the people here in IC that feel like there is no hope and no help... keep fighting!

I feel bad when I get sad because of my bladder, I shouldn't because I DON'T HAVE PAIN, I don't know how I could deal that. What makes me mad, is that I'm not from the States, and in my country I did not found any doctor that could help me, thay just told me, I can't help you anymore. I had to travel to the States to get my treatment. I'm so happy that my doctor always responds very fast to my emails, and when I call him he always responds me. At least he is very supportive, more than my family (that hurts, becasue they don't understand what it is to have my bladder!)

I hope the best to all of you!!!!!!!!! And Kara, all my support to you!!!!!!! I'm sure you will find a doctor that will give all the medical and moral support to you!, I'll be reading your post, and try to cheer you up from very long way from Syracuse!!!!!

[Mel53H]

:grouphug: :grouphug: :grouphug: I am so sorry!

[Kara29]

Asn, Ads,

Thank you for your posts! I appreciate your words of encourgement and support! Thank you for taking an interest in my Blog. I have spent a lot of time and energy on it. I do want to help others. That has always been so important to me. It helps me to focus on helping others when I am in pain. It's a distraction. But most importantly, I don't want anyone to have to suffer the way I did and If there is anything I can do to help someone who is in my shoes even if it's a tiny bit of information, then I am happy.

Hugs to you!

Kara