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why pain after instill???

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  • Krisi
    replied
    Hi. I live in Southern Indiana near Louisville KY. I see a urologist Dr. Bailen and NP , Kelly Gollar, in the region from Metropolitan Urology. They are in both Indiana and Louisville, KY. There is also a Pelvic Pain Center in Louisville that has PT specialists there to help deal with the pain. I haven't been there yet because mine is in control at the moment, but the NP said if things didn't get better with my instillations (heparin mix) it was an option. I don't know if there is anything closer to your area but maybe this could help for now. The link below is to the pelvic pain center. I hope things get better!

    http://www.pelvicpainkentucky.com/

    Krisi

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  • Billsbaby
    replied
    no,they said 12 to get me through till tomorrow.i haven't taken all 12 yet.although i have to take 2 at a time(thats how they prescribed it)thats how bad the pain has been.i only have a few left now and its wednesday.i never have gone over what is prescribed,i am a small girl and meds scare me.thanks for worrying though.

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  • marsi4
    replied
    Hi Billsbaby,

    I'm concerned upon reading your post where you said you were given 12 percocets to get through until the next day. I hope you didn't intend on taking all of them in one day. That is a lot of medication to be taken in one day and you may overdose. Please be careful with pain medication. It is strong medication and should be taken as prescribed, usually one every 4 to 6 hours. I'm so sorry for your pain. If your pain is severe keep going to the Er and complaining to your Uro so they can try and get you an earlier appt with the pain clinic. IC is extremely painful. Keep us posted.


    Marsi4

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  • work it
    replied
    hydrodistention can help some though...like after my 1st one I was in a lot of pain and the 2nd one was okay, the 3rd one I am so glad I had it done cause she found pre cancerous cells that other wise would not have been found

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  • jen74
    replied
    That is why I will not agree to do the hydrodistention. I keep hearing so many bad things about it. I am sorry you are going through this. I pray you will get better.
    Jen

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  • Billsbaby
    replied
    i actually went to a different uro,and he sent me to the place i'm at now,i guess the doc there has a waiting list until july because she is supposedly so good at treating ic patients.i ended up having to go to her np because she had such a long waiting list,which she actually specializes in womens urology too. so i thought i was in the right place,but,i am not liking the feeling i get when i am there,and the fact that she kinda pushed me out the door when i was in so much pain!!!! my old uro would have never have done that.as for the nurse with ic,she said she has mild ic,and doesn't really get much pain because of that,so i never even thought to ask her where she goes.i have a dr. appt. friday with a gp,so i am hoping he will help me out until i go to the pain clinic,thats my only hope for now.i'll let everyone know how that goes.i am just in so much pain,it doesn't stop for a minute.its quite exhausting.i have gotten more and more worse off since my cysto/hydro.i will never get one of those again.i never even had retention problems until i had that done anyway enough whining,thanks for your support again.jamie
    Last edited by ICNDonna; 04-11-2007, 02:34 AM. Reason: Removed negative comment about a specific medical group.

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  • RAS6
    replied
    Oh I am so srory! I am glad you went to the ER though. I can't believe your Doctor won't help you with pain! My first Uro was like that. HE tried tellingme that pain killers were only for getting teeth pulledor after surgery. I told him I had a tooth pulled and had NO medicine afterwards and that didn't even begin to compare to the pain I was having, but he said he couldn't help me and wanted me to wait 6 weeks to get into pain clinic. That's when i looked for a new Doctor. Have you asked anyone from Kentucky about IC specialist's in your area? Have you looked through the find a Doctor feature here? I actually found my Doctor through the ICN. I was wondering the same thing about where the nurse goes to the Doctor as work it. I am very happy she was there though; I have heard so many ER horror stories and I am so thankful your experience was a little better. But that doesn't sound like enough Percocet.
    Thanks for letting us know what happened. I was really worried about you today. This will get better. There are good Doctor's out there. Sometimes you just have to look harder than any should have to.
    Hang in there! We are all here for you!

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  • work it
    replied
    oh I am so happy to hear that you went to the ER. I am sorry about the frustions with the Dr.s though. Since your nurse has IC did she offer any Doc that you could see? Maybe you could use her as a reference.

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  • Billsbaby
    replied
    thanks everyone for your concerns,i just got home from the er.i finally got ahold of doc earlier and she said to go to the er.they cathed me again there it hurt so bad,i had 200cc left in me after peeing.they basically said they think i had some sort of reaction to the catheter???and that put me into a huge flair.i will say,this is the first time in over a month that i haven't been in pain,they gave me morphine,so my pain was pretty much gone.you'll never believe this,my nurse has ic!!!!! so she was very compassionate,she said she fully understood the pain i was in,and was definately very comforting to have there.they only sent me home with 12 percocets,just to get me through until tomorrow i told him my uro will not treat me for pain,he couldn't believe noone has helped me this whole time i've been in this state with my pain.i told him i was at my wits end and i couldn't take much more pain without wanting to end everything.so i am supposed to try and find a gp to get into tomorrow and see if he will help with my pain control until i see a pain specialist.yeh good luck getting into someone new on the same day,and then having them treat me for my pain i am really getting fed up with these doctors in this state,they are not compassionate,and are so worried about addicts,that they don't pay attention to us chronic pain patients.it is so frustrating that we all have to suffer because people want to self medicate themselves.can you tell i'm fed up????if anyone can give me some kind words i would much appreciate it,i really need it right now,i'm in so much pain and theres no end in sight.thanks so much for listening to me ramble on.hope everyone has some pain free days.jamie

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  • work it
    replied
    The answer I got from my uro when I was doing instills is that sometimes it seems like it is getting worse before it gets better....I stopped the instills after about 6 weeks cause I was tired of the feeling that I was feeling worse then I started(if that makes sense)

    So sorry that you are going through this, it is not fun

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  • RAS6
    replied
    Like I said, I am thinking about you and keeping you in my prayers!

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  • L. Thomas
    replied
    I am wondering if it was the same instill ingredients or the same ingredients but a different % of ingredients. Did you do the instillation or did you have it done somewhere? Can you cath it out? I would definately keep trying to get in contact at the MD office. It seems troublesome to me that you didn't have problems before and now you have such pain.

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  • jen74
    replied
    What kind of meds did they use with the instill? Was it DMSO or heperain? I am sorry you are feeling this way. I hope it eases very soon.
    Jen

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  • Billsbaby
    replied
    thanks so much rachael.it has been so hard starting over.noone has wanted to help me at all,so i have been in constant pain for over a month.now this!!! i have never heard of such pain after a rescue instill.i was wondering if i should go to the er.i tried calling my doc awhile ago and she hasn't called back yet that office makes me mad.i am at a loss of what to do.sorry i haven't kept in contact with ya,but i have been in so much pain i haven't wanted to do anything.hopefully i will get control of this soon and start getting on here more.i hope someone can help me out.thanks again rachael.

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  • RAS6
    replied
    oh no...

    Jaimie,
    I am so sorry to here this is happening! I wondered how you have been. I can't imagine having to start over in a new state with new Doctors, it has taken so long to find the Doctor I have now! What kinds of install was it? I had severe pain after my second DSMO install, but not after the rescue installments. My problem with those was not being able to control my bladder and having terrible incontinence. Do you have any other symptoms? I am wondering if maybe you have an infection? Please try to call the Doctor and let them know. I don't think rescue installments are supposed to hurt, not that I had heard of anyways.
    Please know I am thinking about you and will be praying you get some relief. Hopefully one of the Kentucky ladies will get in touch with you soon.

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