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  • embarassing problem

    Along with the pain in my pelvic floor area I also experience some feeling like having heightened sexual feelings. But know it would be too painful to do anything about it. I don't even think it is a real feeling just my nerves doing something strange. Has anyone else ever had this? The burning pain is bad but this is bad too. Like I said it is embarassing to ask but don't know where else to ask.

    I hope it ok to ask

  • #2
    A lady on a vulvodynia foum who I talk to had this, it's how her pain started. Some sort of constant arousal syndrome. I can't remember the name of it. She described it has being "painful arousal".

    Hope this helps.
    TMJ Dysfunction 2009
    Vulvodynia and/or PFD 2010
    IC, based on symptoms alone 2010.
    PCOS March 2012

    8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

    Currently using: IC Diet...pain meds as needed
    Medications / treatment tried and discounted:
    Fluconazole 150mg 1 per week for 6 months (yeast)
    Endep 25mg - 4months
    Lyrica 75mg - 2 months - FLARE
    Oxytrol patch - I think this caused retention.
    Countless creams, lotions and potions.
    Cystoprotek - no change in symptoms
    PT - for 1 year
    Various herbs and supplements

    Comment


    • #3
      Yes, many of us have had that. For me, it went away when my IC treatments began to work.
      Hoping you find relief soon,
      Kadi

      -------------------------------------------------------------
      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest
      "


      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

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      • #4
        Thanks for telling me that it may go away. I am about at my ropes end. some of these symptoms are very bad.

        Sue

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        • #5
          I've had the same thing at times. It's a really uncomfortable feeling. When my symptoms first started it was really bad. Some drs.felt it was a nerve irritation either from the bladder itself or somewhere in the pelvic floor muscles. I would feel it in the whole vulvar area also. It did go away when my bladder and pelvic floor calmed down.

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          • #6
            sometimes Ativan helps. but mostly it flares up after I am up for awhile. I think the muscles getting tight are making it worse. How did you get the pelvic floor to calm down? I feel it in the rectal area too,

            Sue

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            • #7
              I went to pt for pelvic floor spasms. I also took warm baths in epsom salts, did pelvic floor stretches, and also took Ativan. I treated my bladder problems and the pelvic floor problems at the same time. The pelvic floor muscles calmed down first before my bladder did.

              Comment


              • #8
                Originally posted by sshew52 View Post
                Along with the pain in my pelvic floor area I also experience some feeling like having heightened sexual feelings. But know it would be too painful to do anything about it. I don't even think it is a real feeling just my nerves doing something strange. Has anyone else ever had this? The burning pain is bad but this is bad too. Like I said it is embarassing to ask but don't know where else to ask.

                I hope it ok to ask
                See this thread:
                http://ic-network.com/forum/showthre...ousal+syndrome

                Comment


                • #9
                  embarassing problem

                  http://ic-network.com/forum/showthre...ousal+syndrome


                  Thanks for the link. I spent nearly an hour reading and being amazed that i thought I was the only one who had this problem and now I just feel bad for all of us who have had to deal with it.
                  Thanks to all who had suggestions for treatment and how to live with this condition.
                  My pain doctor increased my Neurontin today to 300 at night 200mgs morning and noon. I hope it works. Also said I may the nerve problem and may eventually try the nerve block. I am hopeful that something will lesson this terrible condition.

                  Sue

                  Comment


                  • #10
                    Hi Sue

                    Just wondering how you are feeling now. I experienced the exact sane thing. I explained it to my husband as an orgasm that just didn't stop. Sounds great, right?! NOT!!!! Painful and annoying. Since I have strictly adhered to the IC diet and done some PT I don't experience it anymore. I hope you are feeling better.

                    Suzi

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                    • #11
                      I have been doing the PT for pelvic floor. And taking ativan still helps. I have been doing stretches and I think it is less than it was before. But I will be glad when it is gone all together.

                      Sue

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                      • #12
                        I've always wondered, what kind of stretches do you do?
                        Is it something anyone with IC can learn, or does it have to be taught by a PT?
                        21 years old
                        dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

                        ♥ looking for a way or medication to help stop spasms ♥

                        Comment


                        • #13
                          My pelvic floor muscles were hooked up to a biofeedback machine. It really helped me to see if what I was taught was relaxing the pelvic floor muscles. It may be worth making an appt or two to learn the exercises correctly.

                          Suzi

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                          • #14
                            so far they are not complicated but would be hard to discribe. I am a visual person so had to be shown how to do them, and need a picture.LOL

                            Sue

                            Comment


                            • #15
                              Hi Sue,
                              I thought I was imagining things and I get that arousal thing to and it is annoying and sometimes it hurts or burns. I have a RX for Etrace that urologist gave me, I think its a hormone thing but it comes with the pelvic floor nerve problems. I have an appointment in November with a pelvic floor uro gyn and I have a slew of questions for her. this IC thing is such a complicated disease and it is consuming me and I hate it. Hope you can cope it is very hard. I am just experimenting with my Neurologist until I get to the specialist. She is a godsend in that she takes time for me. Most doctors just wist you off and it gets so frustrating I am working on a 3rd urologist if the specialist doesn't work out. I am paying almost $500 in cobra alone and then all these copays etc and I am on unemployment. its so hard sometimes. I am grateful that I have a wonderful family for support. Hope you do to.

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