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Hi, I have a long-standing case of IC and have failed DMSO, Elmiron, and instillations. I cannot tolerate tricyclics or hydroxyzine. I want to see a pain specialist in the San Francisco bay area who specializes in or at least has knowledge of IC pain, not a general pain doctor. My doctor at Stanford only refers to the Stanford pain clinic and they do not specialize in IC. Does anyone have ideas or feedback? Thanks!
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Saw that you couldn't take several prescription medications so i wanted to share what i am taking. D-3 once a day, Glucosamine msm twice a day(heard it works to repair the bladder wall), d mannose for recurrent uti's, marshmallow root and slippery elm root pills, probiotic specifically for vaginal and urinary health, wellbutrin xl (have taken this for 10 years before ic)I also use tea tree oil combined with coconut oil for urethral pain. Pyridium when i flare. I recently added marshmallow root and slippery elm, they seemed to make a big difference. Good luck! -
There are very few pain management specialists (if any) who specialize in interstitial cystitis. I suggest you make contact with the recommended clinic and ask if they treat IC patients.
DonnaStay 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 foolComment
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I did contact the pain clinic at Stanford, and was told that they do not specialize in IC pain.Comment
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Dr Pacik in New Hamphire
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Thought some of us may be interested in what Dr Pacik is doing in his study for some of us that have problems with penetration with intercourse.
I learned about him from the show the "Doctors"
He has a book which you can download as PDF . Very intersting for all of us.
The book is "When sex seems impossible". Dr Pacik is in New Hamphire
Jo Jo
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Naturegal... The doc who first suspected I had IC and diagnosed it was Dr. Andrew Cook in San Jose (Los Gatos). He is a uro/gyn and is amazing. He specializes basically in all women who have difficult cases or strange things going on especially endometriosis but IC is his next specialty. I flew from Arkansas to see him because I was not getting any answers where I lived. He is more knowledgeable about IC than most uros are. He has a website with tons of info. Just google his name...sorry can't remember the site address.
Found it...www.vitalhealth.comLive life to the fullest day to day. The best way to eat an elephant is one bite at a time!
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DX: IC - November 2002 after hysterectomy
Interstim implanted March 2006 - died May 2011
Interstim replacement June 2011
Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
Docs: Pain management doc, urologist, family practiceComment
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I love my doctor. She will bend over backwards for me. Her name is Doctor Heidi Wittenberg, of Pacific Gynecology and Obstetrics. She's in Pacific Heights in San Francisco. I also go to the Pelvic Health and Rehab center for PFD and they are AMAZING.Current Treatments:
-IC diet
-Stopped taking prelief because it did more harm than good!
-Hydroxyzine HCL 10mg
-Horsetail grass tea
-marshmallow root capsules
-Vaginal Valium 10mg
-Physical therapy for PFD
-Pelvic Floor drops 3X a day
-Chronic yeast infections/BV
-Luvena when needed
-Zoloft
-Ambien
-Synthroid
-Depakote
Diagnosis: Pelvic Floor Myalgia, possible IC,VV, hypothyroidism, chronic depression, insomniac, pre diabetic, the list goes on
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Re: IC pain specialist in S.F. Bay Area?
After 1.5 years in remission I am back with my old symptoms as of IC/Trigonitis. To be clear I was not diagnosed with IC my cystosctopy in May 2013 showed only Trigonitis and I think the procedure may have helped me by widening my urethra. Anyway, I"m back in a flare again for two weeks and so excited to be recommeded to Heidi Wittenberg - I have an appt with her next Friday. This gives me so much hope to nip this in the butt and not suffer with it for another 6 months.Comment
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