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Not sure whether I have IC or PFD? Or Both?

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  • Not sure whether I have IC or PFD? Or Both?

    Hello!

    I haven't been on here in a while mainly because I was in remission for about two years! Which is wonderful... Unfortunately, I am out of remission because I had to go off Elmiron due to insurance reasons.

    About six months after I went off, I started to get flare ups almost every day. I went to Dr. David Kaufman in NYC as soon as I could. I started elmiron/lidocaine instillations, Elmiron 100 mgs/ 4x a day, STRICT IC diet, AZO pills and Tiger Balm Pain Relieving Patches when needed BUT I am not feeling significantly better and it has been four months. I know Elmiron can take up to six months but I remember last time feeling very different by three months.
    Also, I have been taking Elavil 20 mgs since I was diagnosed.

    The reason why I am wondering about PFD and IC is because my symptoms seem worse than what I remember two years ago. Here are my symptoms:

    Pain when bladder is filled up
    Consistent Urethral burning
    Urethral Burning gets worse after bowel movement (never had before)
    Urine stream hard to start and inconsistent stream (never had before)
    Pain seems to last for days as opposed to hours (never had before)
    Seems like my pelvic muscles tense up whenever I feel pain
    Diet isn't making any difference
    Waking up two or three times at night with bladder pain (never had that before)

    All of these symptoms seem to have progressed and I am wondering if maybe I have had PFD this whole time and just assumed that it was my IC acting up.

    My questions are: What do you think? Any semi-clear way to distinguish the two? And what methods have helped you calm down your PFD? And most importantly, any positive words and quotes that can help calm me? My anxiety seems to be through the roof since all this started again

    I cannot begin to express how grateful I am for this network. It has helped me through so much. Giving me so much knowledge to actually know how to take care of myself.

    Thank you all for reading and taking the time to help me!
    Attached Files
    Allie
    24 years old
    Diagnosed since March 2009 (Age 21)

    Meds:
    Elmiron 100 mgs/ 4x a day
    Elavil 20 mgs at night
    AZO when needed
    Strict IC diet

    Other things that help:
    Distractions
    Telling myself how it is just one small area hurting me and the rest of me is fine
    Taking deep breaths
    Relaxing by watching my favorite shows
    A wonderfully supportive boyfriend... very lucky[/FONT]

  • #2
    Allie, it sounds like you could have PFD. The last 3 symptoms especially sound like PFD. The only way to find out for sure is to find a good doctor (I see a urogynecologist, who diagnosed me) or a good PT who specializes in pelvic floor.

    If you can't get in to see anyone for awhile, I'd recommend getting some of the books listed on this forum, especially Healing Pelvic Pain or Ending Female Pain. Use a heating pad or ice, whichever seems to help. No matter if you have IC, PFD, or both, physical therapy can help a lot! Let us know how you're doing, and if we can answer any more questions.
    ----------------------
    -Amanda
    34 years old, bladder symptoms all my life
    diagnosed with PFD and VV October 2009; IC May 2010

    Current meds:
    Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
    Other past treatments:
    IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
    Tried and didn't work:
    Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

    Comment


    • #3
      What helped me with my pelvic floor spasms were epsom salt baths twice a day, sitting on a heating pad, Ativan, pelvic stretches, and pelvic floor therapy. The drs. opinions all seemed to differ on whether I had bladder problems or pelvic floor problems. I ended up treating both.

      Comment


      • #4
        Thank you both! I will definitely try all of those things. I also tried the tiger balm pain relieving patches (they are listed in the icn store) and they are really helping me too.

        I have an appointment with Dr. Moldwin's nurse practitioner in two weeks (he isn't available until October) and hopefully I can make an appointment with him in the next month and a half.

        Could one of you tell me what it is like when you have pfd and maybe how you personally can tell the difference between an ic flare and your pfd?

        Thank you, once again!
        Allie
        24 years old
        Diagnosed since March 2009 (Age 21)

        Meds:
        Elmiron 100 mgs/ 4x a day
        Elavil 20 mgs at night
        AZO when needed
        Strict IC diet

        Other things that help:
        Distractions
        Telling myself how it is just one small area hurting me and the rest of me is fine
        Taking deep breaths
        Relaxing by watching my favorite shows
        A wonderfully supportive boyfriend... very lucky[/FONT]

        Comment


        • #5
          Originally posted by Love2Act16 View Post
          Thank you both! I will definitely try all of those things. I also tried the tiger balm pain relieving patches (they are listed in the icn store) and they are really helping me too.

          I have an appointment with Dr. Moldwin's nurse practitioner in two weeks (he isn't available until October) and hopefully I can make an appointment with him in the next month and a half.

          Could one of you tell me what it is like when you have pfd and maybe how you personally can tell the difference between an ic flare and your pfd?

          Thank you, once again!
          Hello and Welcome, I have IC and PFD I'm not sure if I know the difference between the two, when I'm flaring I have bladder spasms, pain down my inner thighs and pain at the bends (lack of better word )of my legs, I've always described the pain as a "pin sticking" sensation. Hope this helps
          IC diagnosis 3 weeks ago.
          Vesicare 10 mg once daily
          IBS and Gerd-Zegerid
          IC diet
          Elmiron 100 mg three daily
          Hydroxyzine 25 mg at night
          Amitriptyline 10mg at night
          Diovan 60/12.5 daily
          Topral 50 mg daily
          Zoloft 100 mg at night
          Klonopin .5 twice daily

          Comment


          • #6
            Since my pelvic floor spasms have pretty much subsided I can tell the difference now in what the bladder pain feels like and when the pelvic floor was bad. The pelvic floor spasms to me felt like severe muscle cramping and the bladder pain was more of a burning irritated feeling with frequency. Both together were a killer and there was no way at the time I could tell which one was doing what. My current uro felt the bladder pain was causing the pelvic floor muscles to spasm and my second uro felt it was the pelvic floor causing the bladder pain. That's why I ended up treating both. Who was right? I don't know but I do know I had both conditions but don't know which one came first.

            Comment


            • #7
              I think earthlady gave a very good, concise answer. I'll throw in my 2 cents also.

              Since I experience less pain and spasming from my pelvic floor these days, I can usually tell the difference. If you have both, it can be very hard to tell, as tight muscles can influence the bladder, and bladder spasms can affect the pelvic floor. Since you're treating your IC (successfully, I hope!) and you're still experiencing the problems you've described, you probably do have PFD to some degree. One other thing is that for me, an IC flare is usually shorter, lasting no more than a day, but when my pelvic floor is bothering me, I could have back pain or other symptoms for days or, when I was at my worst 2 years ago, weeks.
              ----------------------
              -Amanda
              34 years old, bladder symptoms all my life
              diagnosed with PFD and VV October 2009; IC May 2010

              Current meds:
              Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
              Other past treatments:
              IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
              Tried and didn't work:
              Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

              Comment


              • #8
                i only have pfd (no IC) and i didnt have the urethral burning. but when my pfd flares, it can be horrible pain that lasts days. it tends to be much better in the morning from laying down all night and get worse throughout the day. some days its an aching feeling through the whole pelvic area similar to a bad uti, and some days when its really bad it literally feels like someone is holding a torch up my vagina into my bladder! holding ice to the area helps me a lot when it burns. i also can feel my muscles twitching.
                Pelvic Floor Dysfunction May 2011 from bad UTI
                21 years old, horseback rider (although this has been practically eliminated from my daily routine since the PFD)

                Current Meds: neurontin 600 mg
                valium 2mg as needed

                Comment

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