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  • Phiily Dr recomendations

    Hello,

    Anyone see a dr that they really like, not an NP but a dr that treats IC and Vulvar vestibulitis? Im looking for a 2nd opinion. Other then the office at graduate.

    thanks in advance


    Lyme disease diagnosed 11/05
    vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
    IC diagnosed with hydro/cysto- may 17, 2006

    Over growth of lactobicilli found 8/07 treating with doxy.

    Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

    8/22/07- was able to get my first speculum exam, with pap

    Strep D found in bladder with United medical labs May 2006
    2 strains of strep in stool culture 9/06
    high Strep ASO titre found 10/06

    NEW MED

    Capsasin cream-once a day for 20min,
    BUt wont lie it does burn

    About to start valium supositories for PFD

    Trigger point injections- oct 07

    Current meds:
    Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
    Zanaflex 2mg
    IC and low oxalate diet, no sugar diet
    Xanax for appointments to help relax me since they cause so much pain

    Started PT 3/07, PT has really helped me in ways I never knew that it would

    Meds ive tried
    Lyrica
    Klonopin
    Singulair
    Claritin
    Pyridium
    Soma- can barely tolerate half a pill
    Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
    Estradiol cream
    Urelle- caused worse bladder spasm and retention

    Various antibiotics for lyme which caused yeast and made the IC and VV worse

    waiting for the next chronic illness to pop up


    "Did you know?
    Every 15 seconds,
    a person is
    diagnosed with
    interstitial cystitis."
    Source: J. Dimitrakov, MD

  • #2
    Strep

    Has your doctor told you how the Strep 'ties' in with I.C. and other related conditons? I had strep during my first pregnancy (didn't know it) and my son died in utero at 6 months. My rheumatologist who treats me for Fibro said that all these diseases and conditions are related. He said when the autoimmune system doesn't work properly, all these things can gang up on a person, causing sooo many problems. I've always wondered if the Strep B caused my son's death. Still don't really know to this day (his death was in 1988). I sure would like to know.

    Have a good weekend.
    Dani


    -Bladder surgery to correct reflux-'68
    -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
    -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
    -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
    -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
    PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
    -DX'd with IBS in 2000
    -Rhabdomyolysis in 2001 (has not returned)
    -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
    -DX'd with TMJ in 2000-wear splint
    -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
    -DX'd with Epilepsy -2000
    -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
    -DX'd with Fibromyalgia (2006)

    Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

    Comment


    • #3
      Hello Dani,

      so sorry about the loss of your son. Have you done a search online about strep and pregnancy. I know of someone that got very ill after giving birth because of it.


      I dont see a dr for IC, i see an NP , but i am looking to see a Dr.

      My lyme dr does believe everything is related though, and infection caused and is causing my problems, my NP uro disagrees.


      are you in the philly area?


      Lyme disease diagnosed 11/05
      vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
      IC diagnosed with hydro/cysto- may 17, 2006

      Over growth of lactobicilli found 8/07 treating with doxy.

      Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

      8/22/07- was able to get my first speculum exam, with pap

      Strep D found in bladder with United medical labs May 2006
      2 strains of strep in stool culture 9/06
      high Strep ASO titre found 10/06

      NEW MED

      Capsasin cream-once a day for 20min,
      BUt wont lie it does burn

      About to start valium supositories for PFD

      Trigger point injections- oct 07

      Current meds:
      Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
      Zanaflex 2mg
      IC and low oxalate diet, no sugar diet
      Xanax for appointments to help relax me since they cause so much pain

      Started PT 3/07, PT has really helped me in ways I never knew that it would

      Meds ive tried
      Lyrica
      Klonopin
      Singulair
      Claritin
      Pyridium
      Soma- can barely tolerate half a pill
      Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
      Estradiol cream
      Urelle- caused worse bladder spasm and retention

      Various antibiotics for lyme which caused yeast and made the IC and VV worse

      waiting for the next chronic illness to pop up


      "Did you know?
      Every 15 seconds,
      a person is
      diagnosed with
      interstitial cystitis."
      Source: J. Dimitrakov, MD

      Comment


      • #4
        All related...I believe

        I believe that for some reason, our bodies can't fight off certain viruses, etc.. which make all our organs very prone to develop whatever problems they can dish out. I'm still trying to get information regarding my having a gastrointestinal allergy to shellfish and nuts, and then of course an extreme sensitivity to certain foods which cause the I.C.. There has to be a connection. Since I have all this 'down time' lately....on the couch and recliner....I'm going to see what research has been done regarding all these related conditions and illnesses. They know that if a woman has endometriosis, cysts, etc..the chance of her developing I.C. is almost 90% likely...but they can't say why AND how to FIX IT!!! So frustrating.

        I am in Lawrenceville, Georgia which is north of downtown Atlanta. My husband has a sister who lives in Sharon (or Sharpesville) PA. We will be headed there in August for my nephew's wedding. How much snow do you have now? I'm visiting my parents and grandmother in Alabama this weekend....it's supposed to snow. We don't get it much in ATL anymore or in Alabama, so it's a treat if we can even spot it flying through the air!

        Have a nice evening!
        Dani


        -Bladder surgery to correct reflux-'68
        -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
        -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
        -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
        -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
        PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
        -DX'd with IBS in 2000
        -Rhabdomyolysis in 2001 (has not returned)
        -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
        -DX'd with TMJ in 2000-wear splint
        -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
        -DX'd with Epilepsy -2000
        -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
        -DX'd with Fibromyalgia (2006)

        Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

        Comment


        • #5
          Philly dr

          We only got about 4 inches of snow, enough to make a mess of driving!!!
          I have heard of sharpsville, im not sure how far I am from there.

          I former coworker of mine moved to Atlanta, her husband was from there. Ive always wanted to go there, maybe when i can get this IC under control, Im a braves fan...so would like to go to one of their games.

          Anyway, where do you plan on researching? I comb the web daily trying to peice things together. Ive noticed whenever i eat carbs like rice my crotch burns and i get discharge, either this is a yeast reaction or some kind of alergy of some sort.

          I agree with you in that there is some reason our bodies can no longer handle bacterial infections we used to be able to handle.......something caused our immune system to fail ( i have blood work to prove mine is messed up, or part of it is) not autoimmune though.

          Right now i have a sore throat with some post nasal stuff going on...but its like its in the backround, guess my IC pain just overwhelms my body.


          did you get to see any snow in Alabama? I hope it atleast fluried a little bit.

          michelle


          Lyme disease diagnosed 11/05
          vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
          IC diagnosed with hydro/cysto- may 17, 2006

          Over growth of lactobicilli found 8/07 treating with doxy.

          Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

          8/22/07- was able to get my first speculum exam, with pap

          Strep D found in bladder with United medical labs May 2006
          2 strains of strep in stool culture 9/06
          high Strep ASO titre found 10/06

          NEW MED

          Capsasin cream-once a day for 20min,
          BUt wont lie it does burn

          About to start valium supositories for PFD

          Trigger point injections- oct 07

          Current meds:
          Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
          Zanaflex 2mg
          IC and low oxalate diet, no sugar diet
          Xanax for appointments to help relax me since they cause so much pain

          Started PT 3/07, PT has really helped me in ways I never knew that it would

          Meds ive tried
          Lyrica
          Klonopin
          Singulair
          Claritin
          Pyridium
          Soma- can barely tolerate half a pill
          Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
          Estradiol cream
          Urelle- caused worse bladder spasm and retention

          Various antibiotics for lyme which caused yeast and made the IC and VV worse

          waiting for the next chronic illness to pop up


          "Did you know?
          Every 15 seconds,
          a person is
          diagnosed with
          interstitial cystitis."
          Source: J. Dimitrakov, MD

          Comment


          • #6
            I'm new to all this. Distressed and depressed. I saw dr. at Penn. Wasn't thrilled and was thinking of going to Dr. Whitmore at Graduate. Is there a problem at Graduate that you want to go elsewhere. I think all the big city/university hospitals are going to be the same. Impersonal, hard to get an appt., and hard to speak with someone. Who did you see at Graduate? Where in or near Philly do you live?

            Comment


            • #7
              Originally posted by mich2604
              Hello,

              Anyone see a dr that they really like, not an NP but a dr that treats IC and Vulvar vestibulitis? Im looking for a 2nd opinion. Other then the office at graduate.

              thanks in advatnce
              i see a doctor now named dr. michael birnbaum
              it's on 611 and township line rd his office is in the penns school of opemotry
              his number is 215 886-9116 he's really great

              Edited to remove negative comment about a specific physician.
              Last edited by ICNDonna; 02-22-2007, 05:00 AM.
              *~AmAnDa~*

              Comment


              • #8
                Hi, I'm seeing Dr. Moy at Penn. New to all this so it's hard to make a determination. I'm not on any meds as yet; don't know what to do. Was thinking about seeing Dr. Whitmore. Why didn't you like her? Someone else told me she sees her, but never actually gets to see her; always sees the NP.

                Comment


                • #9
                  Doctor in Philly

                  Hi, I live in philly, far northeast. I currently see Dr. Terrance Malloy at Pennsylvania Hospital, he is in a private practice called MCH Urology he is the chief urologist at Pennsylvania. I have been going to him for about a year now, he is older but knows the bladder, he does not handle all of the pelvic floor issues just the bladder. There is a Doctor at Pennsylvania: Doctor Guterette, he is a uro/gyn he was great and I just did not want to switch from Malloy as he took my interstim out when I was only his patient for a month. He knows the bladder and his associates are all Doctors. Dr Harryhill is up on IC too, they do see more men then women.

                  I went to Whitmore's office for two years. I rarely saw her for the most part she wants you to see the NP'S, I saw Amy and she was good but could not always answer my questions, I wanted to see a Doctor.

                  I had the interstim put in and could not even see her post opp. Graduate is closing and her practice is going to Hannaman sometime this spring.

                  I hope this helps, I miss some things about Graduate but I always get to see my doc when I need to.

                  Good Luck,

                  Mary
                  47 year old Wife and Mom of two teenagers and a Business Manager at a local high School. Total hyst in 2/03 for severe endo, had several adheasion surgeries for pain which did not help. Went to many different specialist for answers and was finally DX with IC in 3/05 . Metronic interstim put in for frequency and pain on 9/05 and still had pain and burning with no relief and had it removed in 5/06.

                  Current Meds, amtriptaline, 1/2 ambien when needed to sleep, hydrocodene as needed for pain, miralax for constapation. Just finished DMSO treatments with new Doc, painful and gave me no relief.

                  Still hoping for remission

                  Comment


                  • #10
                    I live about 50 miles from Philadelphia, but can someone give me a doctor that specializes in IC in or around Philadelphia? Also, can you give out their phone number? Thank you.

                    Comment


                    • #11
                      Hi, Dr. Philip Hanno is at the Univ. of Penn. He is co-chair of the IC Assoc. His telephone # is 215-662-2891. You would probably have to wait at least one month for an appt., but you can call daily and ask if there is a cancellation to get in earlier. I haven't seen him yet, though. Hope this helps. God Bless.

                      Comment


                      • #12
                        Originally posted by DebbieR
                        Hi, Dr. Philip Hanno is at the Univ. of Penn. He is co-chair of the IC Assoc. His telephone # is 215-662-2891. You would probably have to wait at least one month for an appt., but you can call daily and ask if there is a cancellation to get in earlier. I haven't seen him yet, though. Hope this helps. God Bless.
                        Yes, I saw his name on a recommendation board somewhere, but it said Temple University School of Medicine. Is this the same thing? I guess it doesn't matter, I will call. Thank you.

                        Comment


                        • #13
                          Philly dr

                          I go to Dr. Whitmore's office at Graduate in Philly. I don't see Dr. Whitmore but her associate Jennifer is EXCELLENT!!! They're moving to Hannaman in the Spring? I wonder when they'll let me know about the move. Hmm.... Jennifer better move there with her! Isn't Dr. Whitmore supposed to be the best? And seeing her associates is almost as good as seeing her, especially since Dr. Whitmore is in the office most of the times (at least when I'm in there).

                          I know who to tell you to NOT go to... I forget his name but his office is on Bryn Mawr Avenue in Bryn Mawr right near the hospital. Greenfield I think was his name... Absolutely the worst urologist appointment I've EVER been to in my life.
                          IC Diagnosed: January 3, 2007
                          Pelvic Floor Dysfunction
                          Vulvodynia

                          Meds:
                          Estrostep FE
                          Urocit K
                          Prelief (as needed)
                          Urelle (as needed)
                          Darvocet (as needed for pain)
                          Singulair (for seasonal allergies affecting the IC)
                          Cymbalta (for the pain)

                          Have been on and off too many to list because of adverse reactions...

                          Comment

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