I will get to my point soon I promise, but I need so badly to vent to people who understand! My hubby hasn't really gotten how awful this day was and how upset I am that he didn't want to drive me.
Oh what a painful day this has been. I had a regular Doctor's appointment and as soon as I hit the road the pain hit too. I have an hour and a half drive thre and I had to stop 4 times to urinate. Then, I was 5 minutes late to my appointment b/c I had to park on the 7th level of the parking garage! UGH! I was limping by the time I got to his office (which sometimes happens, I don't know why with pelvic pain, but it does)
Well, my Doctor was late and his patients were backed up. So I sat in the waiting room for an hour and a half and the pain was horrible. I had to get up 6 times to use the rest room and couldn't stop crying, even in front of dozens of strangers. It was humiliating. I am a very private person and I tried so hard to control myself but it was just too painful. Finally they found me a room to be alone. The only good thing about this visit was that my Doctor got to see how bad I can get. Usually I am put together and laughing. I told him I actually get worse than that about one day a month or so. I just felt so embarrassed that I lost my composure, but so much got to me.
We decided to continue the Valium (and everyone knows now that there are NO refills allowed, so I just have to call a week ahead of time and they will mail my prescription to me to avoid mix ups like last week) We are nixing the Nortriptyline b.c of the ringing in my ears and heart palpitations I was getting. I am going to start Amitriptyline again, but only 10 mgs so I am not eating everything in the house and drugged up the next day. Hopefully I won't gain back those 10 lbs I lost!
On top of that he added Ophenidrine Citrate (which I have found is generic for Flexon, or Norflex) I had never heard of it and he wants me to take one a day (it's controlled release) He thinks it will help with my pelvic pain and back pain. He says it may help with my frequency too. He heard how I used the bathroom non-stop since I got to the office!

So back to my point: any one tried this? This was not a drug I am familiar with. I thought we would try Neurontin like he brought up back in February, but he seems to keep thinking of other things to try instead. I have major issues with being very sensative to side affects of drugs, particularlly the sedating ones, so maybe that's why. I am going to try it for 6 weeks and go see him again. He brought up interstim again, but I told him I don't feel ready to try that yet and he understood. I would like to see if my Frequency/Urgency issues will get better once we get my PFD under controll before considering surgery. I told him I would constact the medtronic people for a DVD. He is straighforward with letting me know it is NOT for pain (thank God for his honesty!)

Sorry this was such a novel. It was just one of the worse days I have had all around since my diagnosis. The Doctor really had to hear how frustrated I am. It has been almost a year now since this non stop pain started and i am so worn out. I see a therapist, but only once a month, so I am looking for some good self help books. I think I am going to start with the book here about not looking sick. That is such an issue. I go into that world everyday looking like a "healthy" 25 year old, yet my 78 year old Grandmother is in better health than me, takes less medications, and gets around better too! My support seems to be wavering too. My husband loves me, but brings up things to hurt me concerning my illness when he is angry. His well meaning mother thinks that bladder issues are all caused by basically being anxious and Pi**ed off (she reads too many weird books) My older sister wants me to self medicate and see a pshychic healer! NO WAY! I will not do illegal drugs under any circumstances and I am not paying money for wierd stuff right now.
I just need a listening ear and a hug and I get all that garbage instead! I know they mean well, they just want to fix things and what I need is just a "we love you and are sorry this is happening", not any more "solutions: This disease has no quick fix, I am finding that out!
Thanks for reading and I hope to hear from anyone who has tried this drug, with good or bad results.