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I called a doc/teacher at Ut Southwestern Med School on Monday. I just called him back (he told me to) and he set me up on Jan 5th with Dr. Joseph Schaffer. I'm told he's the head uro-gynecologist at UTSW and I'm so grateful to the Dr. who helped me get in. I was told the wait to see him could be months as he only sees ic patients on Weds and Thurs and NEW ic patients only on Weds morning. I'm not particularly religious but I DO believe in God and I believe I've had a miracle happen today!! Wish me luck!!
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Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevated -
Good luck! You deserve a break!"The happiest people don't necessarily have the best of everything; they just make the best of everything they have." -
Thank you Vicki
Since the last doctor I saw told me to "Go home and suffer" I'm pretty cautious about doctors. But I'm having pretty high hopes about this guy. I just wish it was Jan 5th already!!!Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevatedComment
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I'm so glad for you! Praying for wisdom for this doctor and relief for you soon,Kadi
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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.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!
Comment
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Thank you Kadi! At this point I could really use someone with some wisdom!!! Here's hoping, BIG hoping!!!Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevatedComment
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I'm really glad for you! Hope all goes well.
-24.
-Started having symptoms in May 2009.
-Doing pretty well on diet alone.Comment
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I'm glad for you.
Warm hugs,
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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Thank you SO much everybody!! I really, really need a doctor who understands IC. And so far, I seen a lot of doctors but, none of them have any idea about treatments and meds to help. I've got my fingers x'd!!!Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevatedComment
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Just remember that it can take a while and trying different options before the "right" one is found that will help. We are all so very different, it can make IC difficult to treat.
Sending gentle hugs,
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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That's great Katie. I hope he turns out to be a caring doctor who works with you to help you get better.
Mike-
Symptoms: started July 2007
New pain medication regimen has things under pretty good control for many weeks now. Exercise and eating healthy along with pain control have given me new life.
Current Symptoms: pain in testicles, penis and general groin area. Other discomfort that is beyond pain, a maddening crazed feeling that defies description. New pain medication has most symptoms under good control.
Frequency and urgency was a problem the first year or so but frequency is normal now.
Diagnosed: Prostatitis first then IC by Cysto/Hydro
Current Meds: Hydroxyzine 25mg 3 x day, Pyridium 200mg 3 x day (off 3-4 days on 3-4 days), Oxycodone, Norvasc (BP).
Past medications and treatments:
Protatitis and IC diet strict for 6 months, no change. Still watch diet although nothing seems to help or make worse. Have tried reverse, ate lemons to see if worse but no change at all.
Meds tried - Amitriptyline, Detrol, Flomax, Cipro, Doxycycline. many other antibiotics, Uroxatrol, Vicoprofen, Elmiron (6 months at $320 mo nothing), Aloe, Cysprotek, Glucosamine, Marshmallow, various oils, tons more stuff to strange and numerous to recount. Hydrodistension for diagnostic was horrible for two weeks after I was sure I must be going to die because nothing could feel that way and let you live.Comment
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Oh Mike!! I truly hope you are right!! He comes very highly recommended but that's all I know about him really.
And Donna, I know you're right. The doctor who referred me to him told me if he doesn't work out, he thinks he has another doctor for me. That man is truly an angel. He's not MY doctor at all, hes a teacher at med school. He's given me his cell phone # in case I have any questions about anything they want to do. He's just helping me because he's a very nice man. To me, he seems heaven sent.Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevatedComment
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I just called my ex-uro to have my records faxed to my new doctor. After I gave his nurse all the information, I told her that I would like her to check and make sure that his last comment ("you just have to suffer") was included. She read back his whole transcription back to me, up to THAT point. I told her she should check with him because I'm sure he remembers making that statement. I still do, it crushed me. I left the office crying. And I also told her "Right now I'm concentrating on getting myself better. But I haven't made my mind up as to whether or not I'm going to report that to the Medical Board" Then she started talking with me about a bland diet, helpful hints (lower your stress) and how many of their patients benefited from taking extra VIT C!!" She was actually very nice, and since he's not going to be my doctor anymore I didn't argue with her about that. Just thought it was interesting that DMSO and Vit C are the ONLY treatments they've heard of. And he advertises that he treats IC to other doctors!!! Thank God I found a new doctor!!!Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevatedComment
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I am so happy you found a good doctor wish you the best and Have A Merry Christmas.
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Thank you Linda!!! I hope you have a wonderful Christmas, too!!! A pain free Christmas would be great, huh?Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevatedComment
-
HI Katie,
Really glad you found a new doctor
And there are more good doctors out there if you need a third. One thing I did with my lousy first doctor (who wrote me off as bipolar, which I'm not & which statement was removed from my records the second time I requested them, and whose nurse practitioner told me I just had menstrual cramps)--was that I had the ICA send their office an information packet. I have no idea if they read it, but at least I felt I'd tried to educate them in some way.
Kadi
-------------------------------------------------------------
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.
------------------------------------------------------
New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
"
Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!Comment
Comment