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Any help would be appreciated...

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  • Any help would be appreciated...

    About five months ago my uro/gyno felt my symptoms were coming from PFD and not IC, so she sent me to PT. The minute the physical therapist started working on trigger points (external) my hip and back pain went through the roof, radiating down into my thigh and knee. She went internal once, and it caused breakthrough bleeding. After three months of sheer agony, we decided to stop and see if things would calm down. It's like a moving target right now. My hip hurts, but everything else is okay, then my back and the hip is okay, then the hip and back is okay and then it feels like my bladder is going to fall out and I have urgency and frequency. It's particularly bad today because I had diarrhea three times today - and it was already stirred up because I had a pelvic ultrasound and went to another PT who probed around. On top, I had a trigger point injection last Thursday that caused severe hip and back pain. So...TODAY'S problem is frequency and bladder weakness...any advise? I've soaked, taken muscle relaxers and pain meds. Nothing seems to be working today. You try and help yourself and end up worse than before. I'd give anything to be where I was five months ago!

  • #2
    I understand about trying to help yourself. You are doing what your doctor suggested that you do. All you are doing is trying everything and that is admirable. They may be hitting a nerve that controls your back and hip when they are doing this pelvic floor therapy. Have you asked the Pelvic Floor Therapist what could be going on? Have you talked with the Doctor about it? Never be afraid to tell them that something they are doing is hurting another part of you. Your body is not made up of separated pieces. It's all one and one thing connects to another.

    You gave it a great shot! Maybe this isn't the correct treatment for you. Keep up the fight Rose. I know it feels like 10 steps backward, but you are getting some feedback along the way that can be very valuable as you continue on with your IC treatments. Even if you have to take some breaks here and there.

    You may want to talk to the pelvic floor therapist and doctor about the changes you are noticing from day to day. You could have an infection as well.

    I'm sorry to hear that you are feeling so rotten.

    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at: and

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


    • #3
      Hi Kara - I stopped PT three months ago because of all the problems and haven't been able to get back to square one since then. My IC "team" - uro, uro/gyno, PT - all know what's going on, but are unsure as to what to do at this point. I know my body needs a rest - but so busy hard to give it one. At least I can give it a rest from all the treatment.
      Thanks for your support. I wish I the PT would have worked, I gave it a shot, but I just don't think it's for me. Now I wish for not feeling like I have to go all the time to the bathroom! It's the small things in life I guess!


      • #4
        Hi there!
        I am in physical therapy for Psoas muscle spasm that starts in my upper abdomin and results internally on the left side of my vagina. We all feel THIS is the reason for my pain - perhaps I have IC too - but I don't have frequency/urgency/urethral issues at all.

        I think its very important to be in physical therapy for PFD and spasms. You might not be with the correct physical therapist. My girl specializes in PFD - so she gets all the girls. She is very knowledgeable about it. When she found my internal trigger - I nearly went through the roof but was SO GLAD she found the source of my pain! What I thought was bladder was really muscle spasm.

        At any rate - you have to expect to be uncomfortable. BUT only for a day or two according to my PT. PT takes work, but it shouldn't be injuring you elsewhere. If you are in more pain, different pain, pain in other places and your PT doesn't know why......then that is just scary. My PT doesn't want me to do anything that causes me pain - including all her millions of abdominal exercises she gives me. She says if any one thing hurts...stop doing it.

        I think you need to seek out the best PT in your area who knows alot about what you have. Its okay to have to do what's best for you. I do believe though if you have these spasms, PFD issues they aren't going to get better on their own. You need to follow through with the therapy. Just with someone who isn't hurting your body!!!!!

        Good luck!


        • #5
          Hi mom, thanks for the words of encouragement. Unfortunately, I went to the guru of pfd physical therapists in my area. The pain persists five months later. My IC/PFD "team" - uro, uro/gyno, pt etc. - are all very confused. The past two days have been even worse with urgency sensations and my bladder feeling like it's going to fall out, which causes you to tighten that area up. Just a vicious cycle.


          • #6
            Me too!

            I was diagnosed with a mild case of IC officially a little over a year ago, but have been dealing with chronic pain for 2 1/2 years. My uro wanted to start DMSO, but I am really hesitant to do that, as I was starting to wonder if the it was the IC causing all my pain. I have a small bladder, but no real urgency/frequency issues.

            So I went back to my gyno and as she is retiring, got to see a new dr. She is a godsend-very educated on IC and pelvic pain. She did a heparin instillation, which provided no relief. She says that although my bladder and uterus are tender, my real pain is in the nerves. So for 2 weeks now I have had injections into those spots with a painkiller and have actually had some relief.

            She does want me to have PF therapy, and am really interested to see how this works and how people respond to it.

            Sorry so long, just wanted to give my story.