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Hello,
I am wondering if anyone knows of or is seeing a urologist that actually specializes in IC in New England.
Thanks!
I am wondering if anyone knows of or is seeing a urologist that actually specializes in IC in New England.
Thanks!
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Great question Lynn.
Im in maine and im looking for an IC specialist too.
Erika
IC diagnosed officially via cysto/urodynamics 1/26/07
Grade II Endometriosis diagnosed via lap 12/11/07
"Fall down seven times, Stand up eight."
"Life is a tragedy for those who feel and a comedy for those who think."
Current Treatments:
Interstim Since 5/25/07!
Birth Control
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There is Dr. Paul Church in Boston who is really liked by many. There are several urologists that are quite good in Burlington at Lahey which is right off of 128. I don't think Dr. Sant sees patients anymore, I think he is more into research and stuff like that...maybe somebody out there knows better than I. 
Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learnComment
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yvette, do these doctors you mention specialize in ic?Comment
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Dr, Sant was THE person to go see if you had IC....Paul Church and the Others at bUrlington are very capable of handling IC patients with care and compassion. Burlington Lahey even did a special segment about IC and bladder pain issues in one of their mailout newsletters. It was nice to see they were trying to spread the word out and make people in Mass aware of what they were treating. There's quite a few Mass people who have it....many of whom don't visit this board, but rather deal with it in their own way. I will be proking around Lahey myself to find a new Uro (and also one who can help maintain my Interstim) I'd like to see if I can find someone who also may work out of Peabody Lahey Clinic as well as Burlington....because commuting would be easier for me
Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learnComment
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thanks yvette! it would be quite a commute for me...i live in central mass. But, i am looking to maybe have a consultation with another doctor to see if he/she can offer anything different. i don't mind making the drive for that.
thanks again!Comment
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Dr. Friedman
There is another IC Specialist that took care of me for 7 years. His name is Dr. Emanuel Friedman in Natick, MA. If you'd like his contact info, feel free to PM me. I no longer see him because I live in NY.
KaraComplex 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
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It's very rare to find a doctor who actually specializes in IC. Even though there are a lot of people with IC, in most areas there aren't enough to maintain a physician's practice.
I feel fortunate in having a urologist who is familiar with, and keeps up on treatments for IC.
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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Kara,
i actually used to see dr. friedman, but switched because my insurance changed. i am actually happier with my current doctor. i liked dr. friedman, but he never suggested a hydrodistention or instills, and at the time i didn't know about them. after finding that out, i was surprised that he never suggested those things, especially since the medication i was on didn't really help.
i'm just looking for a second opinion, hopefully from someone who sees a lot of ic patients.
thanks!Comment
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I go to Lahey in Burlington and I see the same uro I ahve been using for the past 29 years. He was very well versed on IC, but is no longer seeing IC patients. I guess he still sees me as he did most of my surgeries- he made my internal urostomy pouch. You can call Lahey and ask if any of the uros there have a special interest in IC.Comment
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Brigham and Womens urogynocology
Brigham and Women's Hospital has a huge Urogynocology group. They have a bunch of satellite locations, such as Weymouth and Exeter. I am sure there are more. I see them at Newton Wellesley Hospital. They seem to be very well informed and up on the latest things. One of the doctors (not mine) was doing the botox treatments. I know they have a fabulous physical therapist for pelvic floor problems, and the nurse practitioner that does the instillation treatments is incredibly knowledgeable. You get the impression that they listen to the patient, and then research their stories for trends, so that they can see if something new has come up that they should take a closer look at. This is my fourth Uro practice and they are miles ahead of the others as far as knowledge of IC. Check the web for thier other locations, they all seem to work together nicely.I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.
DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.
I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car
The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.Comment
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