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  • I'd love some support in central NY

    I live close to Syracuse. Anyone else in my area? I've been suffering with pelvic pain for a year and my gynecologist has treated me for BV and yeast. She never mentioned IC until a few weeks ago and I saw a urologist last week. I'm new to all this and feeling scared and alone. A local friend would be heavenly!
    3/06 IC symptoms began immediately after endometrial ablation procedure called NovaSure
    5/07 IC diagnosed by cystoscopy with hydrodistention finally after 14 months of doctor's appointments and pain

    Medications: Elmiron since 8/07, Atarax, Synthroid & Cytomel for low thyroid, Lisinopril for high blood pressure, Xanax for anxiety as needed, Vitamin D 50,000 units once a week

    Supplements: MSM/glucosamine, Quercetin, Desert Harvest Aloe Vera, Flora Biotic 16, Magnesium, Citracal, B-complex

    What's worked: IC diet, physical therapy for pelvic floor dysfunction, TENS, rescue instillations and acupuncture

  • #2
    I am not in Central NY, but only a few hours away in the Buffalo area. I see a great specialist in Rochester. I know there are a few ladies here in the Syracuse area. Hopefully they will get in touch with you. I am here if you need anything though! Feel free to PM me. I am still fairly new at this, but have had to try alot of different treatments already. We may not be in the same area, but it is nice to have an IC friend in the same state!
    Good luck and welcome to the ICN board!
    Rachel
    DX's:
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

    Comment


    • #3
      I am not from Syracuse either, but I know that Kara29 and Emma'sMommy are both from there. You might try PMing them. They may know of a support group in your area.

      By the way, to the ICN!

      Hugs,
      Amy

      Comment


      • #4
        I live in both places. Feel free to private message me.
        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:
        http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

        Comment


        • #5
          Thanks!

          Thanks so much to those who responded to me. Knowing others have battled similar problems and have been successful gives me hope for my future...Sue
          3/06 IC symptoms began immediately after endometrial ablation procedure called NovaSure
          5/07 IC diagnosed by cystoscopy with hydrodistention finally after 14 months of doctor's appointments and pain

          Medications: Elmiron since 8/07, Atarax, Synthroid & Cytomel for low thyroid, Lisinopril for high blood pressure, Xanax for anxiety as needed, Vitamin D 50,000 units once a week

          Supplements: MSM/glucosamine, Quercetin, Desert Harvest Aloe Vera, Flora Biotic 16, Magnesium, Citracal, B-complex

          What's worked: IC diet, physical therapy for pelvic floor dysfunction, TENS, rescue instillations and acupuncture

          Comment


          • #6
            No problem Sue! I hope you stay here and keep posting! This board has really been a huge help for me, from giving me support when I am scared and in pain, to helping find practical solutions to driving, taking trips, pain management, etc. The cook book section has helped make sticking to the diet alot more enjoyable. Plus I was able to find a great IC specialist through this board as well. Most importantly, I was able to find out about more treatments when my first Doctor's were telling me I was out of options and I feel that is going to giveme my life back! Good luck to you! I hope find what works for you very soon!
            Rachel
            DX's:
            IC; PFD; possible Fibromyalgia; IBS;

            Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

            I've Tried:
            three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
            Currently using:
            Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
            Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
            I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

            Comment


            • #7
              Catheter question...

              When saw my urologist Thursday, they put a catheter in to see how much urine was left in my bladder after I emptied it and wanted a sterile urine sample for testing since my first showed blood. That sounded reasonable so I agreed to it. The catheter hurt a lot going in and coming out and later I had a bit of pain but it was better by the time I went to bed. By Friday afternoon though I felt stinging pain (like the catheter going in) and all weekend it hurt a lot.

              I called the uro this morning and a nurse said some people can have a lot of pain after a catheter so to take Advil and warm baths. She said the pain should keep getting better but may take up to 2 weeks to go away. Anyone else ever had this experience? Seems a bit strange to have this much pain from a simple procedure. I never had a catheter in my bladder before so don't know what to think.

              They suspect I have pelvic floor dysfunction and I'm seeing someone next Monday about that. Sure seems like that's a problem for me too.
              3/06 IC symptoms began immediately after endometrial ablation procedure called NovaSure
              5/07 IC diagnosed by cystoscopy with hydrodistention finally after 14 months of doctor's appointments and pain

              Medications: Elmiron since 8/07, Atarax, Synthroid & Cytomel for low thyroid, Lisinopril for high blood pressure, Xanax for anxiety as needed, Vitamin D 50,000 units once a week

              Supplements: MSM/glucosamine, Quercetin, Desert Harvest Aloe Vera, Flora Biotic 16, Magnesium, Citracal, B-complex

              What's worked: IC diet, physical therapy for pelvic floor dysfunction, TENS, rescue instillations and acupuncture

              Comment


              • #8
                Advil can be somewhat irritating to some people with IC. Just curious, where is your Doctor located? Is he an IC Specialist?

                I hope you are feeling better real soon!

                Kara
                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:
                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

                Comment


                • #9
                  Originally posted by Kara29 View Post
                  Advil can be somewhat irritating to some people with IC. Just curious, where is your Doctor located? Is he an IC Specialist?

                  I hope you are feeling better real soon!

                  Kara
                  Kara you're sooo funny.....an IC specalist in Syracuse....

                  i agree with Kara do NOT take advil, i know personally it irritates my bladder. maybe try some urostat....if you can get your uro to give you an rx for it (perydum) its alot cheaper! it will numb your urethra and help with that burning feeling.

                  So what did your uro suggest for treatment? i personally have found (and Kara will back me up) that uro's in this area dont know much about IC around here, and i personally try to not see my uro unless i absolutly have to.

                  I also sent you a PM
                  Last edited by ICNDonna; 05-15-2007, 05:55 AM. Reason: Direct medical advice.
                  Erika
                  wife to Jeremy
                  mom to Emma (3-8-05)
                  and Natalie (7-23-07)


                  Meds i'm currently taking:
                  Lortab as needed for pain


                  Meds that did not help:
                  Detrol LA
                  Lexapro (caused urgency)
                  Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)



                  Comment


                  • #10
                    Originally posted by gopher7895 View Post
                    When saw my urologist Thursday, they put a catheter in to see how much urine was left in my bladder after I emptied it and wanted a sterile urine sample for testing since my first showed blood. That sounded reasonable so I agreed to it. The catheter hurt a lot going in and coming out and later I had a bit of pain but it was better by the time I went to bed. By Friday afternoon though I felt stinging pain (like the catheter going in) and all weekend it hurt a lot.

                    I called the uro this morning and a nurse said some people can have a lot of pain after a catheter so to take Advil and warm baths. She said the pain should keep getting better but may take up to 2 weeks to go away. Anyone else ever had this experience? Seems a bit strange to have this much pain from a simple procedure. I never had a catheter in my bladder before so don't know what to think.

                    They suspect I have pelvic floor dysfunction and I'm seeing someone next Monday about that. Sure seems like that's a problem for me too.
                    Did anyone check to see if you have an infection? Just curious. Unfortunely while Advil really helped my pain (mainly from PFD), it made my frequency go through the roof (every 10 -20 minutes) So I personally have to avoid it. I also have had issues with catheters. I don't get them any more, but if I do I always request a child sized catheter, or the smallest one they have. The Doctor I see has them and back when I was getting installs they had them as well. Every person's body is different and some of us need smaller catheters. Also, any time I have ever had a catheter the doctor or nurse used lidocain gel first, and I have been to three different practices now! I hope they did for you. I can't imagine how much that would hurts without the Lidocain!
                    I hope you are feeling better now!
                    Rachel
                    DX's:
                    IC; PFD; possible Fibromyalgia; IBS;

                    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                    I've Tried:
                    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                    Currently using:
                    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                    Comment


                    • #11
                      CNY friend

                      Gopher7895, I live in the Central NY area, north of Syracuse. I do not have pelvic pain or IC, but I have had heavy leaking problems for 15 years or more. My Dr. sent me to Dr. Joel Bass, URO, Associated Urologist of CNY. I had an interstim implant on 4/25/07, and it's doing super; a new life of dryness. Dr. Bass refered me to a lady who has the interstim, to help with her IC, and surprise when talking to her, she is a business friend. She is doing quite good, over the past 5 years. I could make a connection for you if you would like. Want to send a private message? Although we don't share the exact same problems, I would be happy to be a friend. sue:hi
                      Attached Files
                      Last edited by suebee2; 05-08-2007, 11:08 AM. Reason: picture

                      Comment


                      • #12
                        I have to travel to Rochester, NY for any bladder issues.

                        Hi Erika!! I hope you and your family are enjoying the nice weather here.

                        Sue,

                        It's great to hear that the Interstim is helping so well!

                        Rachel (I sent you a pm)

                        Hugs to you ALL! We should have a little luncheon togther this summer.

                        Kara
                        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:
                        http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

                        Comment


                        • #13
                          Hi Kara.....how are you and your mom doing?? Your sister's wedding is comming up quick...i bet she is excited.

                          Jeremy and i have been better actually.....he got into a car accident in front of work a few weeks back and totaled his car (not his falt) and just last night (monday) i got t-boned by some mornon and ended up spending 7hrs at labor and delivery having the baby monitored (she's fine).....and did i mention Jermey is on travel for work? and the only car we have that is drivable is my inlaws car and it's standard and my belly is too big to reach the clutch? oh yeah and i was showing clients houses when this all happened (co-worker of Jeremy's....nice couple....too bad i gave them a heart attack!)? and my back is killing me and i can't take anything for it....which sucks!

                          but i have actually been enjoying the weather...spent lots of time outside on my back deck in the sun because Emma was at daycare and i couldnt go anywhere.....it was very relaxing actually....i'm kind of looking forward to doing it again tomorrow....and then my mom will be taking me to the chiropractor and hopefully she will be able to put my back back together (<----funny sentance!)

                          Rachel, advil does the same thing to me....it's awful.....and it took me months to figure out what is was....especally b.c my old uro TOLD ME TO TAKE IT FOR IC PAIN?!?!?!?!
                          Last edited by ICNDonna; 05-15-2007, 05:58 AM. Reason: Negative comment about a specific physician.
                          Erika
                          wife to Jeremy
                          mom to Emma (3-8-05)
                          and Natalie (7-23-07)


                          Meds i'm currently taking:
                          Lortab as needed for pain


                          Meds that did not help:
                          Detrol LA
                          Lexapro (caused urgency)
                          Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)



                          Comment


                          • #14
                            Advil is a problem for me too. I just figured that out and wouldn't have made the connection if people here hadn't mentioned it. I'm finally figuring out the things that cause pain for me. I guess I'm just a little slow. I went to Crouse yesterday for my pre-testing for my cysto/hydro yesterday. A couple nurses mentioned to me that I'm in good hands with Dr. Kronhaus. They said he treats a lot of IC patients and they had nothing but good comments about him. I go in at 6:30 a.m. (wow that's early!) on 5/24.
                            3/06 IC symptoms began immediately after endometrial ablation procedure called NovaSure
                            5/07 IC diagnosed by cystoscopy with hydrodistention finally after 14 months of doctor's appointments and pain

                            Medications: Elmiron since 8/07, Atarax, Synthroid & Cytomel for low thyroid, Lisinopril for high blood pressure, Xanax for anxiety as needed, Vitamin D 50,000 units once a week

                            Supplements: MSM/glucosamine, Quercetin, Desert Harvest Aloe Vera, Flora Biotic 16, Magnesium, Citracal, B-complex

                            What's worked: IC diet, physical therapy for pelvic floor dysfunction, TENS, rescue instillations and acupuncture

                            Comment


                            • #15
                              hey gopher i pmed you.i was obviously lucky to find an ic specialist i guess.she knows her stuff i can tell you that,and she is THE MOST compassionate woman i have met.she has been there on the phone with me many times while i cried,she calmed me down,listened to me,and always had the right answer.i now live in ky and she still calls me every week for moral support until i am comfortable with my new specialist.she has called and talked to my new uro here 2 times,and after she talked to her,she called me to let me know she felt very good about my new uro!! she is my .i could go on forever.let me know if you need more info.

                              Comment

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