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Interstitial Cystitis Association
32 recommendations and reviews from 4 people
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Referral from
March 28, 2013
Marcy W. asked:Does anyone know of a compansionate, knowlegeable Pain Specialist, for IC, in the Clearwater-Tampa, Fl area. I moved from northern Georgia to Clearwater over 2 months ago and am in so much pain because "new doctor" could care less what I go thru daily.IC G. replied:Yes, just send an email to the ICA at icamail@ichelp.org and ask for a list of doctors in your state. It will have all types of doctors.Linda S. replied:Please email icamail@ichelp.org- they will give you names.
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Referral from
December 1, 2015
Jessica J. asked:I'm looking for a good doctor, with a lot of experience, who pays attention to new info, who listens... Who is also in Oregon, or Northern CA, or Washington (I'm in Corvallis, OR). I've been to many many doctors over the years, and while things were better for a while, i'm dealing with a lot of daily pain, with no good doctor managing care. If you have any suggestions, I'd love to hear them. Thanks everyone!Interstitial A. replied:Email icamail@ichelp.org and we can assist you with this question.
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Referral from
June 5, 2015
Eulalia A. asked:Hello I'm me to the group... I don't know what to do anymore, I'm tired of being in pain and the Dr's not believing in me or not knowing what's causing my chronic pelvic pain I've been suffering with for over 4 years and it's getting worse!! I was recently diagnosed with Interstitial Cystitis and the catheter treatments helped a tad bit then I noticed my pelvic pain is getting worse I can't walk for more then 3 blocks without it feeling like heavy weights on my pelvic or my pelvic feels like it's ripping apart! What can it be who can I see? ?? I'm live in Arizona if anyone knows any good Dr's or advice please help! ! .Interstitial A. replied:Eulalia Rodriguez Alvarado: I'm sorry to hear that you're struggling so severely. ICA maintains a FREE healthcare provider registry. You can search by specialty and geographic region. Hopefully you can find someone on there. To access the registry, follow this link: https://www.ichelp.org/HealthcareProviderRegistry
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Referral from
April 16, 2015
Mary M. asked:I need to know how to find a Dr. that knows how to help me with my IC. I moved 4 hrs. Away from my former Dr.and I need one closer . My previous dr. Said to go Internet and look up pelvicpain.org but no one was listed outside of the city I moved from. Can anyone give advice I have been dealing with IC for10 years now. I need a dr. That won't go into a dazed look on their face when I mention my IC!Interstitial A. replied:Ms. McPherson: If you're looking for a new doctor, you may find our FREE Online Healthcare Provider Registry helpful. You can access the registry here: https://www.ichelp.org/HealthcareProviderRegistry In addition, we maintain a listing of face-to-face support groups: http://www.ichelp.org/Page.aspx?pid=386 Lastly, someone on our Online Support Community may be able to direct you to a good doctor: https://www.ichelp.org/OnlineSupportCommunity
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Referral from
September 3, 2014
Trina V. asked:SAN FRANCISCO BAY AREA: Hi, I'm new to this area and need to find a urologist who can help me with my IC. Any suggestions?? Thanks!!Interstitial A. replied:If you’d like to search for a practitioner, I recommend using our online healthcare provider registry. You may find our online healthcare provider registry useful. You may access it here: https://www.ichelp.org/HealthcareProviderRegistry To access the registry, enter your username and password. If you do not have a username and password, click "New user registration" to register.
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Referral from
July 10, 2014
Nicole O. asked:Does anyone in the Greater Philadelphia/Delco area know of any good IC doctors My Obgyn has had me on Elmeron for close to 5yrs nd it does nothing !!! Thanks for any help in advance ladies nd gents..!!!Interstitial A. replied:Nicole OConnor: Try this: https://www.ichelp.org/HealthcareProviderRegistry
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Referral from
October 30, 2012
Interstitial A. asked:Feel free to take information from www.ichelp.org AND the Update magazine that members receive to your healthcare provider. They will appreciate receiving information about treatment that may help you AND their other patients with IC. A good doctor will always take suggestions as long as they come from a reliable source.Interstitial A. replied:send your request to icamail@ichelp.org
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Referral from
June 2, 2012
Alice B. asked:I live in NYC and have gone through 3 horrific urologists already and loads of money to see then. The worst was a man who is on the ICN list! Someone please recommend a NYC doc who is hip to the newest treatments. And can we talk about Uracyst and how to get it???Interstitial A. replied:If you can email icamail@ichelp.org we can let you know who has agreed to be on our list. Also please let us know who the bad uros were and you have the right to file a complaint to your insurance company and the NY Dept of Health about the doctors who mistreated you. Uracyst was in clinical trials in the us but failed to work so the pharma company stopped pursuing FDA approval
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Referral from
May 24, 2012
Bridget M. asked:Ive had IC since 2003, after a year of misdiagnosis. I am on zero meds for it! The one med I tried (Elmiron?), made me dizzy and nauseous. I need a new doctor, financially Im just worried about the 'try this/try that' cost! My IC hits always at night when I lay down so I take Ambien to sleep. Otherwise, forget it- I'll be up all night long making trips for nada! Ive been on Ambien for 8 yrs, but really want to try another IC med. Im way overdue for a distention, but again- deductibles are killing me! Any meds you can recommend that have worked for you? Having my own 'what about this' list is better than going in empty handed! Thanks!Interstitial A. replied:please take a look at www.ichelp.org for more choices. Hydrodistentio is not considered therapy. There are many meds and therapy choices for the symptoms of IC. It does NOT have to be an approved IC med. email icamail@ichelp.org and ask for names of healthcare providers in youro area
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Referral from
May 11, 2015
Ellen M. asked:I need a Dr. in the West Palm or South Florida area. Was diagnosed with IC. Please helpIC G. replied:The ICA can help. Here's a link to the ICA website page where you can search for doctors in your state. You have to create a login and password and then you can search. When searching I find it best not to put in any specialty; just put in your state. You'll get more results that way. https://www.ichelp.org/HealthcareProviderRegistry
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Referral from
January 23, 2015
Madeline M. asked:I need help! Can someone recommend an IC Doc in the michigan area, please!IC G. replied:The ICA can help. Here's a link to the ICA website page where you can search for doctors in your state. You have to create a login and password and then you can search. When searching I find it best not to put in any specialty; just put in your state. You'll get more results that way. http://www.ichelp.org/HealthcareProviderRegistry
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Referral from
June 14, 2014
Amy R. asked:Does anyone happen to have any recommendations for doctors in the Western Pennsylvania area? Im greatly seeking SOMEONE who can help me. Thanks!IC G. replied:he ICA can help. Here's a link to the ICA website page where you can search for doctors in your state. You have to create a login and password and then you can search. When searching I find it best not to put in any specialty; just put in your state. You'll get more results that way. http://www.ichelp.org/HealthcareProviderRegistry
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Referral from
December 9, 2013
Christie C. asked:I need a specialist? Any recommendations please? I live in WV but willing to travel.IC G. replied:The ICA can help you find a new doctor. Here's a link to the ICA website page where you can search for health care providers in your state or any state. You DO have to create a login and password, but once you do, you can do your search. I recommend just searching by state and not including the specialty as you will get more results that way. http://www.ichelp.org/HealthcareProviderRegistry
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Referral from
November 20, 2013
Celia W. asked:could someone direct me to the area of your website or this facebook area on finding a NEW IC DOCTOR. I live in south Jersey 45 minutes from phila. i saw one of the more wider know docs in phila) and am now seeing someone in south jersey. would like to see if someone has any suggestions for another doc in south jersey or philly. thank you.IC G. replied:Here's a link to the ICA website page where you can search for doctors in your state. You have to create a login and password and then you can search. When searching I find it best not to put in any specialty; just put in your state. You'll get more results that way. http://www.ichelp.org/HealthcareProviderRegistry
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Referral from
September 22, 2013
Laura D. asked:Really desperate for a great doctor in MA who treats ic. I have tried every med available and watched my diet. I just cannot stand the constant pain from this and need a good doctor to look into things a little deeper. I have a great urologist but just does not seem like he can help me anymore. Please let me know.IC G. replied:Here's a link to the ICA website page where you can search for doctors in your state. http://www.ichelp.org/HealthcareProviderRegistryIC G. replied:You have to create a Log-In and then search by state. It's very simple to create a log-in and once you do, just search by state (you'll get more results). I searched MA and there are 7 pages of names. Here's the link to where you can "register" with the ICA and then you can log in and search for doctors. You want "New User Registration" https://www.ichelp.org/HealthcareProviderRegistry
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Referral from
September 12, 2013
Jodie C. asked:Does anyone have leads to a good and kind IC specialist in the Austin or San Antonio, Texas area? I have had IC for 3 years and had been OK (relative term) the last year but now I am flaring again. I had a total thyroidectomy in November 2012 so I am worn out from being sick and I feel I am driving my family crazy. I have my yearly in a few weeks and my gyno is very nice but is not a specialist.IC G. replied:Here's a link to the ICA website page where you can search for healthcare providers in your state. http://www.ichelp.org/HealthcareProviderRegistry
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Referral from
August 26, 2013
Jessica H. asked:Does anyone have any tips on getting a good doctor that will listen. The one i have now keeps saying that he will not prescripe anything for pain. He says i don't really need it. It is like he thinks this is all in my head.IC G. replied:You do need a more knowledgeable doctor. The ICA can help. Just email them at icamail@ichelp.org and ask for a list of doctors in your state (or any states you might feel are close enough to go to if you are near enough). They will email you a list for FREE. That said, most IC doctors, primary cares, urologists, gynecologists, etc. are not inclined to get involved in pain management. Your IC doctor may very well be sufficient for treating you to some extent, but should be giving you a referral to a Pain Management Specialist. Pain Management is a very specialized field and I actually am not surprised that your current doctor might not prescribe; I wouldn’t expect him to. Pain Management doctors generally require you to sign a binding contract that you won’t see other pain doctors while under their care, usually take urine samples on every visit and take your photo. They have specialized knowledge and skills and that’s who you should be seeing to manage your pain. But since your current IC doctor refuses to give you a referral for pain management and doesn’t seem to know anything about treating IC other ways, then you most definitely need a new doctor. Even if you get a new IC doctor, that’s no guarantee they will prescribe pain meds for you. But if pain is your biggest problem, you need a Qualified Pain Management doctor and your IC doctor SHOULD be able to give you a referral.
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Referral from
July 19, 2013
Helen R. asked:Need help, our IC doctor left the state, and his replacement does not know about IC. My question is what is the difference with urine tests in an IC patient, than that of someone who does not have it?IC G. replied:None, really. While it is not unusual for an IC patient's urine to show trace amounts of blood, other than that, there is no difference between the urine of a healthy patient and an IC patient. It's one of the reasons there is no test to diagnose IC. If you need a new doctor, just email the ICA at icamail@ichelp.org and ask for a list of doctors in your state. They will send it to you for FREE!
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Referral from
April 14, 2013
Kimmy F. asked:Has anyone been to the Mayo Clinic for bladder pain? After years of drugs, surgeries, diets & different urologists.. I can't find any relief. I'm from Canada too, so it's going to be damn expensive.IC G. replied:Mayo Clinic is NOT one of the places to go for treatment of IC. IC patients have gone with little to no success. The ICA could give you a little more info on this if you wanted to email them at icamail@ichelp.org
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Referral from
April 9, 2013
Melissa M. asked:Anybody know of an MD to treat IC in Fairfield county ct?IC G. replied:The ICA can help. Just email them at icamail@ichelp.org and ask for a list of doctors in your state.
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Referral from
February 25, 2013
Yolanda M. asked:I am 27 and was diagnosed about 18 months ago. I also have Crohns disease. I need to find a new urologist because the urologist I had wasn't a good fit. So I'm not currently on any medication for either disorder. The pain is excruciating at times. I live in south jersey if anyone has any suggestions.IC G. replied:The ICA can send you a list of doctors in your state for free; just email the ICA at icamail@ichelp.org and ask for a list of New Jersey doctors.
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Referral from
February 16, 2013
Christine G. asked:Any IC specialists in the PA or NY areas?IC G. replied:Just email the ICA at icamail@ichelp.org and ask for a list of doctors in PA & NY. They'll be happy to send it to you.
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Referral from
October 16, 2014
Wendy J. asked:Looking for a Doctor who specializes in Interstitial Cystitis in Alabama. Please HelpBarbara I. replied:You can request a referral list from the ICA. https://www.ichelp.org/HealthcareProviderRegistry
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Referral from
April 26, 2014
Carmen S. asked:Can anyone tell me who would be a good doctor to see regarding IC in these areas of Michigan: Livonia, Ypsilanti, Ann Arbor. Thanks for any help you can give.Barbara I. replied:Carnen, you can ask the ICA for their referral list. You will nee to setup a login and password first. I hope this helps! https://www.ichelp.org/HealthcareProviderRegistry
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Referral from
March 29, 2014
Kristen K. asked:Anyone know any good IC docs in Saint Louis MO? I am looking for an IC doc and hopefully a PM doc that is familiar with IC. Thank you!Barbara I. replied:Kristen Kruse, you can ask the ICA for their referral list. I hope this helps! Take care and God Bless! https://www.ichelp.org/HealthcareProviderRegistry
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Referral from
March 12, 2014
Sara D. asked:Anyone know of a great IC urologist anywhere in FL? I'm looking to move to FL but sure where exactly yetBarbara I. replied:Sara, the ICA can provide you with a referral list. Sending you hugs and prayers! http://www.ichelp.org/HealthcareProviderRegistry
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Referral from
December 30, 2013
Briana M. asked:Can anyone recommend a urologist in the Orlando area of Florida that accepts Cigna or Medicaid? Most doctors I've seen want me to undergo more invasive treatments (like cystoscopies, instillations, blade stretching, etc.). I already know my bladder is damaged and even a small pediatric catheter causes me a world of pain. I'm looking more into pain management at this point. I've changed my diet and tried different medications to target the inflammation, as well as drink baking soda water. Tylenol, ibuprofen, etc. won't even touch the pain and unfortunately the doctors I've seen (when I lived in Virginia) haven't been open to pain management medication.Barbara I. replied:Briana,I'm sorry you have so much pain. You can request a doctor referral list from the ICA. Have you tried bladder instillations? They helped me with my pain. I also take Gabapentin. I hope you find the relief you are looking for soon. Hugs and prayer to you! https://www.ichelp.org/HealthcareProviderRegistry
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Referral from
May 20, 2013
Genesis M. asked:I was hoping if there is anyone in the DC,MD and VA area that has IC and has a good doctor treating you if you could pass on name and number. I need to find a different doctor because mine is not taking my pain seriously. I had surgery in 1/13 and lost one Fallopian tube, they removed 2 cysts from my overy as well as found out I have endometriosis and IC. Looking for some relief in my life . A good understanding doctor is very much in need. Please comment on my post~ thanksLinda S. replied:write to icamail@ichelp.org we have names of good drs
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Referral from
April 10, 2013
Melissa L. asked:I am losing my great IC doctor to his relocating to another state. Anyone know a good urologist for IC in Jackson, MS area?Linda S. replied:write to icamail@ichelp.org, also pls let them know which dr is moving so the provider list can be current.
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Referral from
August 20, 2012
Sydney W. asked:Does anyone know of a good IC doctor in/near to Tampa, Florida?Linda S. replied:Please send your request to icamail@ichelp.org
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