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  • whats working for me

    I have posted here before and I thought I would post this if it could help someone else. What im about to write might be disturbing-so be warned. I am a 40 yr old male that got officially diagnosed just over a year ago. I have been having problems for years but I was told it was my prostate. Ihad to urinate ALL the time. After my hydro, my doctor(who just deals with IC) told me that i was one of the worst cases he has ever seen(3/4 of my bladder is basically gone). I have been on all the standard drugs and the diet since I found out. Valium, narcs, instills.--ive tried it all. The first 9 months were the hardest. I work in the medical field and I would have to go to work with a diaper, for a had to pee about 40-50 times a day. Working with a wer diaper really sucks until I had time to change it. I would have bladder spasms so severe I ended up inbut the the ER many times--sometimes the spasms would last 3-5 hours of screaming in pain. I tried to think of things to get me through each day, my wife, dog, job. Then i founf what really started helping me-------PT and message, especially the message. With IC, most people have Pelvic floor dysfunction. MY PFD was so bad that i never even realized. My meassage therapist is someone Ive known for a long time and a good friend. Well, she started working on very, very deep message on the Pelvic floor, as well as internal work. Yes its embarressing, but it really helps me. I go 2 times a week for an hour. Not all message therapists will give you a deep tissue message where you need it, after all, its not a popular place for a deep tissue message. I sure hope this can help someone else--sorry to be discriptive in what I was going through, but I felt it was important on how bad my IC was and still is( I have my days). but I believe the deep tissue message on the pelvic floor saved my life. I want to stress again, when I say deep tissue message--I mean she actually feels like she is ripping my bottom some days to loosen up those muscles. Hope this can help someone
    Last edited by ICNDonna; 12-22-2010, 03:59 AM.

  • #2
    I am so sorry it took that long for you to be diagnosed for IC, though I am happy to hear that you found something that works for you. I hope and pray that researches come up with a better treatment for IC or a cure, that would be great for all of us.
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    • #3
      I'm so sorry you've had such a hard time with your IC and PFD. But I'm glad that you've found something that helps you, regardless of what it is!! You give me hope that I'll find something to help, too. When I finally find an IC doctor I'm hoping to get into PFD PT. Good luck to you and I'm hoping and wishing for your continued success and relief.
      Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
      Lexapro-20 mg
      Aciphex
      Ambien-as needed
      Percocet-7.5 up to 3 per day as needed
      Valium-10 mg x2 per day
      Phenergan-1 at night
      Prelief w/everything
      Now recovering from acute pancreatitis

      Currents treatments that help somewhat:
      Heating pad
      Hot baths
      Ice
      Being VERY still while lying down with legs elevated

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      • #4
        I will stress PT a lot just make sure yours listens to you and can work with you, which yours sounds like a good therapist.

        I'm glad you are doing better
        -Cassie

        21 year old female. Diagnosed as of November 2008 with onset of symptoms.

        I am currently diagnosed with IC, PFD, endometriosis, asthma, and vulvodynia/contact dermititis, IBS, and fibromyalgia.

        Medications:

        IC:
        -Amitryptyline 10 mg

        Fibromyalgia:
        -Neurontin (in place of lyrica because I can't afford it- lol) 300 mg x3 a day
        Flexeril. 10 mg. As needed.
        -
        Endometriosis:
        -Microgestrin.
        First laparoscopy showed moderate to severe endo

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        • #5
          Hey Mud

          Sounds like you have a PT who really knows what she is doing. My hub went through some PT, but he was in such a bad flare at the time, he could not tolerate, and we put it on hold for now. She mostly had dealt with female patients but had a few male patients. I must admit she mentioned the internal stuff, but my hub has a problem with that and always has, so that was out from the beginning. Yeah, I can imagine it is embarrassing, now you know what women go through. LOL!!! It is great it is working for you, any little miracle is a welcome one. I will say ours did some DEEP trigger point stuff from the outside, mostly around the lower interior hip bones, and Bob said it was painful but relaxing at the same time, which was the goal. He usually always felt better after. So she was trying to accomplish the internal stuff from the outside, and it probably would have been even much more successful had she been able to "reach in."

          Don't be embarrassed, they've seen it all. It can certainly be undignifying at times, but after all, it's just another body part. We all got 'em, and your therapist does too. Take care, and have a great holiday season. Jill, wife of Bob

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