Pain Management Clinic...

**Ashelliak** · 04-25-2006, 02:45 PM

I FINALLY put my foot down with my doctors office. I went there yet again last week and asked them about my pain management referral and my "supposed" hydro/cysto that need to be scheduled/. Apparently, they have sent out the referral (FINALLY). But, ...yes there is always a but...the pain management clinic is supposed to call me with an appt. time. So, I took it upon myself to call the clinic and they said that they have received the information and are waiting for my doctors office to send back a confirmation letter. So I called the office today and told them what needed to be done (god forbid I leave them to get it done). So, HOPEFULLY I will have an appt. time scheduled soon. Jeez. So, it gets better. I ask them about the cysto/hydro and the girl looks at me and tells me she has no idea what I am talking about. Meanwhile I have been talking to her about this for weeks (never knowing her name) so, I said, "I have talked to Amy on the phone a few times and told me she was going to speak with the doctor about this, I have been waiting for well over a month." She looks at me and says "I am AMY." Go figure right? So, they never scheduled it so, I am still waiting on that. What is wrong with people!?!? GRR. I called my family doctor today to see if I can get my pain med refilled (I hate asking) and he wasn't in the office, won't be until tomorrow, so I am suffering for the night. fun fun fun..I need them to get this stuff done, no one seems to understand how bad it is.

**Kara29** · 04-25-2006, 03:10 PM

Ashley,

I just went to a lady pain manamement specialist that was so good to me. She lives near me about 10 minutes from me. She has been very helpful so far and was one of the ones who tried to take care of me when I was in the hospital a few weeks ago. She said that she read my IC story and that she had never heard of it beofore me and that I taught her something with my IC Story. She said she is ready for the challange of taking on her first IC patient and plans on opening her doors to more. Just thought you might want to know in case you need a backup. I will be gone for several weeks but Ihurttoo and Baba Yaga know my info if you need it.

Good Luck with this one for now!

Kara

**K9wife** · 04-26-2006, 01:25 AM

You guys both missed a GREAT Support Group meeting last night (I understand why, though). It was AWESOME, and taught us some terrific ways to cope through the tough times.....I found it interesting, that I personally invited our Pain Management "specialists" and Physical Therapy department to join us....after all it was in the same building and they had to walk BY us to leave! Nope.....nobody was interested enough in our illness I guess. but a Physical Therapist from an hour away DID join us, sitting quietly in the back of the room until all of our speakers had gone- then she revealed herself as a Physical Therapist and told us that she wanted to attend so that she would have a good feel for what IC is really like because they are just NOT taught about pelvic pain issues, unless chosen as a specialty. That renews my faith that somewhere in this world there are STILL caring professionals that will attend to our needs.
Sorry you both missed us, but I can p.m. or email you info as I remember it. The whole self-relaxation ideas they shared were VERY helpful, and the stretches they showed us are IC compatible. To Kara, the group sends their love and prayers, and to Ashelliak, we missed you, but don't give up on the Pain management thing. P.S. It appears that the "pain Management Specialist" I asked to join us last night is holding his OWN inservice for hospital staff later today....I plan on going just to be a little thorn poking at him! heeheehee....AND to see what he has to offer, of course.

**Kara29** · 04-26-2006, 02:25 AM

Thank you to the Northern NY state IC Support Group for being there even though I only met you all once. I appreciate your support. Like I mentioned I am glad there is a Pain Management Group that is willing to take care of IC Patients. Her name is her name. I only reccomend seeing her b/c she is the one that expressed the interest in helping us IC people. The others in the clinic were not as good as she was. Her name is Dr. Rina C. Davis (Pain Medicine, Physcial Medicine, and Rehabilitation) She works out of The New York Pain Center. She is the one to see not the others. She was the nicest and most compassionate as to what I was going through while at the hospital and afterward.

They have several locations. One of them was right near where my Huband works so that was easy for me. You just have to call to see where Dr. Davis will be when you want to see her.

www.nypaincenter.org is where you can find the phone numbers.

Kara

**Ashelliak** · 04-26-2006, 04:18 AM

Kara- Thank you for the information, it is really appreciated! It is defintely something I will look into. Plus, I have been to Northmed, and Northeastmed for treatment before. I am going to try and go to the one I have been referred to but, I have my doubts. So, it is nice to have a backup plan. My referral is so close to being done, so I am happy for that. I am just a little worried because, they are sending me to University Hospital Pain Management Clinic. So, I have NO idea who I am even seeing. I am very nervous about it. I have all these high expectations of what they could possibly do for me, and I am worried that it will all come crashing back down. I want them to listen to me, and not look at me like I am crazy for having this type of pain. I am seriously at the end of the rope right now. I am hurting so badly with no doctor to run the tests, and no one to take care of the problems at hand. I have been out of my new job more than I have worked and, thank god they like me because, they have still kept me there. I LOVE this job and, I want to stay. I have a good family doctor that is really great. He is a good doctor and he is very nice. I just don't want to be "that patient". The patient that keeps calling and coming in because I don't feel good. I just want them to understand that I am honestly trying to save the small fraction of the life I have right now. I am very worried. I called the office today to see if they will refill my pain medication but, he doesn't come into the office until 1pm so, I hope it works out for me because, right now I need it.

Ps. K9wife I am sorry that I could not make the group. I have been in pretty bad pain the last couple of days and they made me work yesterday. But, please inform me if you have another group because, I would love to be able to attend!

**Ashelliak** · 04-26-2006, 10:45 AM

I am having a breakdown, I swear. The doctor who has given me the last two prescriptions won't write me anymore, and now they are telling me that the pain clinic can't get me in until August!!!!!! What am I supposed to do until then!?!?!?!?!?!!??!

**K9wife** · 04-26-2006, 02:04 PM

I know that I went through the same route with Pain management folks around northern and Central NY state.....NOBODY 1) knew about IC, or 2) validated IC as a "chronic pain" type of illness.In fact, the Syracuse people had never heard of it then... It can be a lonely place, that's for sure....if you'd like to email me I'll send you some helpful info off the Boards. hang in there!

**BigFig** · 04-26-2006, 02:52 PM

Originally Posted by Ashelliak

I am having a breakdown, I swear. The doctor who has given me the last two prescriptions won't write me anymore, and now they are telling me that the pain clinic can't get me in until August!!!!!! What am I supposed to do until then!?!?!?!?!?!!??!

How can they do that!

It's just right to leave you in such pain and misery. Did you talk to the doctor directly or just to one of his staff? I would call back and DEMAND to talk to him, or at least get an appointment ASAP. Well, now that I think about it maybe you shouldn't demand, just tell them that you need to talk to the doc ASAP and when they ask you what it is for tell them to talk to him about pain management. Do they know that you can't get in to see the pain management until August? Do yourself a favor and don't just talk to the staff, obviously they don't get it. Now I'm mad. I have had to go through this with my doc's office once and I called my uro and he then called my doc's office and I had my prescription that same day. Maybe you should try that approach. Wish I could help more. Hang in there and keep us updated!

**cass2376** · 04-29-2006, 05:37 PM

Originally Posted by Ashelliak

I am having a breakdown, I swear. The doctor who has given me the last two prescriptions won't write me anymore, and now they are telling me that the pain clinic can't get me in until August!!!!!! What am I supposed to do until then!?!?!?!?!?!!??!

Oh my goodness, that is soooo not right!! I would make an appt. w/ the Doc. who refused your refill and show him that you are going to be going to the pain clinic but that they can't see you till Aug. Ask him to help you out w/ pain meds untill then. I can't remember who it was, but someone went through the same thing here on the IC site and made an appt w/ the same doc who did not want to write anymore scripts too cause she was referred to a pain clinc too. Her appt. was a long wait too so she was straight up w/ him and made a deal with him. She brought all her referral info w/ the appt. times and dates, and also brought the IC handbook w/ all kinds of info on how much pain IC can cause and the meds that should be given to help w/ pain. She also had her hubby or a family/friend who could be there for support and also testify to how much pain she was in dailey. She then sat down w/ him and said she wanted to work out a "contract" w/ him for pain meds. She told him that she needed relief untill she was seen by the clinic and said she would apreciate it if he would help. She also agreed to see HIM exclusivly for her IC pain. When she came in w/ all her paperwork and IC info , he realized she was serious and not just asking for pain meds, she really needed them!!
Believe it or not, he prescribed her the exact amount of pain meds she would need to get her by till the appt and he even gave her a little more just in case. Maybe you can do the same thing? Bring your closest person who sees you in pain and can advocate for you if you get too upset or nerves get the better of you. Come prepared paperwork wise and just be completely honest w/ him in how you need his help untill you can get in w/ the clinic. Sometimes it is better to see him/her in person then over the phone. It shows that you have it together and are being smart about your needs. Its worth a try! I hope you feel better soon and get the pain relief you deserve!! untill then, maybe the ER is the answer for now? Good luck
I will keep you in my prayers! God Bless, Cassandra