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  • #1

    Hi!

    Hi there. I'm so happy to have found this forum. I have finally been diagnosed with IC and PFD after years of suffering, and have started on meds (Elmiron, Atarax, and Enablex) last week. I can already tell a difference!


    I start PT on Monday and am a little nervous about it, so if anyone has any advice on how to relax during internal therapy I would greatly appreciate it.
    Diagnosed with: IC, PFD, endometriosis, uterine fibroids, adenomyosis, pelvic congestion syndrome

    Surgeries: pelvic laparoscopy (1999) to remove adhesions, supracervical hysterectomy (2009)

    Medications: Elmiron, Atarax, Enablex

    Physical therapy: Since 6/11
    Tags: None
  • #2
    HIII! Welcome PT therapy was a breeze for me, I didnt actually HAVE muscles that were in need of releasing or anything, but I had a PT specialist check me out Just breathe and relax The lady I had was amazing, We were having a normal convo the whole time her hand was up there...lol Just start a conversation and change your focus. Do what they tell you, and try to form a good working relationship with the specialist. I found that the PT specialist knew more about IC than the drs I had been to previously. I can tell you that the chiropractor really helps me!!!!! I plan on also getting accupuncture. I ordered Atarax so I will be getting that prob tommorow and I am also on Elmiron. Good luck with PT!

    Jenn
    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



    Me in my graduation gown!

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    • #3
      Welcome.


      So glad you found a site that is full of wisdom and encouragement.

      Comment

      • #4
        I would take a warm bath in epsom salts and stick a therma care heat wrap for menstrual cramps on my pelvic area before I went to the session. I kept the therma care heat wrap on during the internal muscle work. It helped to keep the pelvic area relaxed. After I came home I sat on a heating pad for a short time.

        Comment

        • #5
          Welcome glad you found us!

          Comment

          • #6
            welcome to the forums
            Newly IC diagnosed as of February 2011.

            Medications I'm on that seem to work:
            Zoloft- one once a day
            Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

            Failed Meds:
            Elmiron-after 4 months,digestive side effects got to be too much
            tramadol-allergic
            DMSO treatments(5-6)
            probiotics

            THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
            AROMATHERAPY-candles,incense
            Village Naturals Aches and Pains Peppermint Bath Salts
            Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

            ACUPUNCTURE/HERBS
            Significant pain relief so far.

            MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

            Add me on facebook Angela Hasic

            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Lord, make me an instrument of your peace;
            where there is hatred, let me sow love;
            when there is injury, pardon;
            where there is doubt, faith;
            where there is despair, hope;
            where there is darkness, light;
            and where there is sadness, joy.
            Grant that I may not so much seek
            to be consoled as to console;
            to be understood, as to understand,
            to be loved as to love;
            for it is in giving that we receive,
            it is in pardoning that we are pardoned,
            and it is in dying [to ourselves] that we are born to eternal life.

            Comment

            • #7
              Originally posted by earthlady View Post
              I would take a warm bath in epsom salts and stick a therma care heat wrap for menstrual cramps on my pelvic area before I went to the session. I kept the therma care heat wrap on during the internal muscle work. It helped to keep the pelvic area relaxed. After I came home I sat on a heating pad for a short time.
              I wish I could do this, but I will be going directly after work. Thanks for the suggestion, though.
              Diagnosed with: IC, PFD, endometriosis, uterine fibroids, adenomyosis, pelvic congestion syndrome

              Surgeries: pelvic laparoscopy (1999) to remove adhesions, supracervical hysterectomy (2009)

              Medications: Elmiron, Atarax, Enablex

              Physical therapy: Since 6/11

              Comment

              • #8
                to the IC Network.

                The therapist will help you to relax. You'll be fine.

                Warm hugs,
                Donna
                Stay safe


                Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                Have you checked the ICN Shop?
                Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                Patient Help: http://www.ic-network.com/patientlinks.html

                Sub-types https://www.ic-network.com/five-pote...markably-well/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                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.                 [3MG]

                Anyone who says something is foolproof hasn't met a determined fool

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                • #9
                  Hello, I started PT yesterday. The therapist did an external exam yesterday and found very few trigger points to work on. I'm a little sore this morning. She showed me how to do deep breathing exercises and some very minor stretching movements and best of all these can be done at home.
                  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

                  • #10
                    I've been in and out of PT for over a year. It has helped quite a bit. A little weird at first during the internal work, but my PT is great!

                    Suzanne

                    Comment

                    • #11
                      Thanks everyone for your replies. I have a little bit of time now so I figured I would tell my story.

                      I can't remember when exactly my symptoms started because I've always been *that girl* that has to pee all the time. I am 42 now and I can remember being in school worried about how long it was going to be between classes/breaks, etc, but I never thought I was *different* per se. I thought it was normal.

                      My mother (whom I no longer have a relationship with - long story not related to IC) always told me when I was a child to make sure I peed before I left the house. Even if I didn't have to, she always told me to try. So I have always equated leaving the house (or anywhere for that matter) with making sure my bladder was empty. I think this is where a lot of my problems come into play.

                      I started noticing my IC symptoms (frequency mostly) about 15 years ago when the frequency increased. The only reason I noticed, however, is because my boyfriend (now husband) commented on how often I peed. I should add that I had always had problems with my periods - very heavy and very painful. I was put on birth control pills at age 15.

                      I was having such horrific pelvic pains - the kind that would make me double over at the grocery store because it felt like someone was shoving a knife up inside of my vagina - by 1999, that I went to a new gyne and basically begged him to perform a laparoscopy just to see what was going on. He looked at me incredulousy and said "You want me to cut you open?" and I said 'YES!"

                      The laparsocopy confirmed that I had multiple pelvic adhesions, which they removed. It never mentioned my bladder.

                      My pain decreased tremendously after that surgery for a bit but started again a few years later. And in the meantime, the frequency and urgency to pee kept growing.

                      My main focus during all of this was my uterus. It was causing me a tremendous amount of pain, which I contributed to my frequent trips to the bathroom. There was a point in time in which my gyne said "that sounds like IC" and I just kind of brushed her off, because I knew that the pain I felt was in my uterus, not in my bladder. The frequency and urgency wasn't "pain" to me and I had always associated IC with pain.

                      Regardless....she eventually sent me to a urologist for a cystoscopy. The doc was very unprofessional and I had a very bad experience (I won't go into here) And his report, back to my gyne, was that everything was normal.

                      So, again, we focused on my uterus. I had MRIs, ultrasounds, biopsies,etc....and finally was diagnosed with uterine fibroids and pelvic congestion syndrome. My gyne also suspected endometriosis. At this point my bladder issues were getting worse, too, so she sent me to a new uro-gyne for urodynamic testing.

                      The uro-gyne suspected IC and decided to do a potassium ? test - I can't remember exactly, but it involves injecting some sort of potassium liquid into your bladder and if it burns, you have IC. It burned so hw said "I think you have IC". He told me about the diet and wanted to put me on Elavil. He also started me on Detrol. I refuse the Elavil because I have been on SSRIs before and have gained weight and didn't want to go there. The Detrol didn't do anything for me. He didn't offer any other meds.

                      A few months later my pelvic pain was so bad that I practically begged my gyne for a hysterectomy. I had been bleeding for 2 months straight and was in a constant state of pain. She agreed and scheduled me for a laparscopic supracervical hysterectomy. During the hysto, the same uro-gyne from before did another cystoscopy.

                      My diagnosis after surgery was: endometriosis (which is still on my ureters), adenomyosis, pelvic congestion syndrome, and uterine fibroids.

                      I applaud you if you are still reading!

                      My surgery was 2 years ago and the urinary symptoms have gotten worse. My pelvic pain is gone, so I know 100% it was from my uterus. But, the bladder symptoms just keep getting worse. Before I went to this new MD I was seriously in the bathroom 50+ a day just trying to pee. I have always felt a constant pressure on my bladder and an inability to empty my bladder completely. I would sit down to pee, dribble a little bit, push, wait, pee a few drops more, push again, stand up, sit down, push,.....repeat, repeat, repeat. I was convinced I had PFD and mentioned it to my gyne, to which she just kind of shrugged off. I was frustrated so I decided to do my own research.

                      I found a doc who specializes in PFD and IC and I love her. She has diagnosed me with both. Her method of diagnosing me with IC was a cysto with what I think was hydrodistention (although I've read that folks are normally put under for that....she just filled my bladder until I told her I couldn't stand it anymore and we looked at it together on the screen)
                      Dr. Lewicky-Gaupp is awesome I am so happy with her and the meds she has prescribed. I have been on Elmiron, Atarax, and Enablex since last Wednesday and can already feel an improvement. I have noticed that I have more *productive* pees now, if that makes sense. Meaning, when I go, it's a substantial amount and it comes out very forcefully without me pushing. And when it's done, it's done. There's no pushing and straining to get it out now. I still feel an urge to push, but not much happens when I do, so I just let it go now. I know that the push/strain is a double-edged sword, so I try to consciously not do it and it's been working great. I'm not sure if it's one med in particular or a combo of the 3. She also prescribed PT, which I start on Monday and am scared to death!!! She swears that PT helps both IC and PFD, so I am hopeful.

                      My IC problem has never really been pain, although I feel burning if I eat something off the bad diet list (which I am bad at, but use a ton of Prelief). My problem has always been frequency and urgency and an inability to empty my bladder (or feel like I have). I feel bad for those that have pain and am glad that my IC does not normally manifest itself that way. It's more of an uncomfortable feeling than anything else. I don't think I can ever accurate describe the uncomfortable feeling that I have on a daily basis, 24 hours a day, 365 days a year. People think you're crazy when you have to pee all the time, so it's nice to know there's a place like this that I can come to and feel understood.

                      Thank you so much for reading all of this and for listening to my story.
                      Diagnosed with: IC, PFD, endometriosis, uterine fibroids, adenomyosis, pelvic congestion syndrome

                      Surgeries: pelvic laparoscopy (1999) to remove adhesions, supracervical hysterectomy (2009)

                      Medications: Elmiron, Atarax, Enablex

                      Physical therapy: Since 6/11

                      Comment

                      • #12
                        Thanks for sharing your story. when I was diagnosed a few months ago my "pain" was just a feeling of a constant UTI, then after my cystoscope I had severe pain, I am finding relief with all my meds as well.
                        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

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