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I went on Thursday and I thought I was ready. But I was not. The pain I had while she was inserting the cath past the bladder sphincter was enough to bring tears to my eyes. Then when she started pumping in the water I only made it to 200 cc's before I had tears in my ears. I WAS able to pee it out, which was a fear of mine but I told my husband if it comes down to inflicting that kind of pain on myself, I don't know if I can do it. Instills haven't been discussed yet but I remember that pain SO vividly. And that was after I told her that the last time the cath hurt so bad that I hurt for several days afterwards. So she used a pedi cath, but my God, that HURT!!! I'm worried now about my in office cysto which is coming up on the 30th. But I'm not/can't think about that now. Right now, I'm just trying not to freak out.
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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 -
My first in office cysto was agony, I left that office trembling and crying in pain. That Dr was not very compassionate and that was the LAST time I saw him, it was the first time I saw him also! The next one I had I just told them that there was NO way I could handle that without something for pain or something to help me with the pain. My Dr perscribed me ONE valium, I thought that was hilarious, only ONE. Anyway, it did help me a lot! It wasn't the most pleasant thing I have done but it did help me relax and he seemed to do the whole process a little better. Do you have anything you can take? Maybe you should ask for something. I know a lot of people on here say there is nothing to them but for those of us that have a lot of pain, they aren't very easy. I wish you the best.
I never had the urodynamics testing, the first Dr wanted me to do that but my Dr that diagnosed me never even mentioned it. I forgot, why are they having you do these tests? You have already been diagnosed, right?Link to the patient information, everything from What is IC? to Disability
http://www.ic-network.com/patientlinks.html
American Urological Association Clinical Guideline
Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
http://www.auanet.org/content/guidel...ent_ic-bps.pdf -
I have been dx'd but my doc wanted more "information". Like what it takes for me to cry (?)
And I do have pain meds and Valium (you're right, 1 is pretty funny) and I guess the reason I thought I was ready was because I had read on here of so many people doing it themselves with no problem. But I had a BIG problem!! Like I said I'm not thinking about the cystoscopy til the 29th, that way I won't have too much time to worry about it.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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Sorry you had so much pain. Good suggestion on the valium and did they apply a topical anesthetic at all? That would probably help too. Too bad they just didn't do the cystoscopy while they had the water in there! Why do they even want to do it? Not for diagnosing purposes right? because you already have IC. What are they trying to rule out? Maybe its unnecessary.Cindi
Gelnique for frequency/urgency - works great
Macrobid after sex
Prilosec, continuous birth control pills
synthroid .088mg, mucinex-d, restasis
Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil
Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.
IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
Great treatment flowchart on page 19 of the pdfComment
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I don't have any idea except this is my new uro-gyno. And he's not the one who diagnosed me. I don't have a clue except that he said boyth the uro dynamics and are cystoscopy are "necessary".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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Necessary for his new car?!!?! Haha, sorry couldn't resist. I swear sometimes that is how I feel. I find that with the catheter situation it is easier when I do it myself than when they do it. Maybe it is just having that control or knowing when it is coming that helps. Don't guess they would let you insert the scope though, so that is no help. I know what you are talking about, when it hit the inner sphincter and unfortunately the topical anesthetic isn't going to help that, it might help the lingering after pain though. Maybe you could ask for that too.
Let us know what kind of info they find out, I am interested to know if this will change your course of treatment.Link to the patient information, everything from What is IC? to Disability
http://www.ic-network.com/patientlinks.html
American Urological Association Clinical Guideline
Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
http://www.auanet.org/content/guidel...ent_ic-bps.pdfComment
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Check to see if they knock you out for cysto. My first doctor gave me no meds. My second doctor knocked me out, which was amazing. If it makes you feel any better, i think that the urodymamics test was worse than the cysto. Good luck. Keep us posted. Sending prayers your way!Comment
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My husband and I have joked that me and my kidney stones paid for my other uro's lake house and his trip to Argentina, lol!!!Originally posted by sailawaygrl View PostKatie-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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katie
sorry you had to go through that. i often myself have said if these treatments,tests, etc keep causing me pain i will just stop and try to heal the natural way.i still dont understand why the urodynamics was deemed necessary if youve already been diagnosed/had a cystoscopy. i often wonder if any of these doctors really know what theyre doing when it comes to IC.Newly IC diagnosed as of February 2011.
Medications I'm on that seem to work:
Zoloft- one once a day
Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)
Failed Meds:
Elmiron-after 4 months,digestive side effects got to be too much
tramadol-allergic
DMSO treatments(5-6)
probiotics
THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
AROMATHERAPY-candles,incense
Village Naturals Aches and Pains Peppermint Bath Salts
Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion
ACUPUNCTURE/HERBS
Significant pain relief so far.
MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
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***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***
Add me on facebook Angela Hasic
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Lord, make me an instrument of your peace;
where there is hatred, let me sow love;
when there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.
Grant that I may not so much seek
to be consoled as to console;
to be understood, as to understand,
to be loved as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying [to ourselves] that we are born to eternal life.
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Ms Kate,
Did you read the AUA guidelines Jill just posted? If you have already been diagnosed, cystos, urodynamics and a few others are not indicated when you are already and almost downright discouraged. Take a look see,and take care of yourself. Jill, wife of BobComment
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Urodynamics
Controversial in already diagnosed patients. Please... I agree w/Sailaway-- they don't need to buy a new car, house, etc. They didn't even TELL me it was urodynamics-- just "we need you to urinate into this toilet." I refused the "take off your underwear, cough and stand over the chux." Demeaning .... and stupid. When I'm flaring, I lose urine anywhere from5-30 cc's... measured it myself. No need for further $$$. Saved myself some $$$ but it makes me
I missed the urodynamics refusal.
I like the doctor... but you have to watch out for the "high rent zip code guys."
A medical editor friend said my instincts were right about the urodynamics; a lot of the uro guys on the inside track think it's a waste.
And WHAT/WHY do they need an in office cysto for an already diagnosed patient? Torture--not having it and check the zip code. errrrComment
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I have seen people post about thier experiences with catheters. Fortunatley I am one of those who doesn't have any problems with cathing. BUT it is so insensitive to say that there is no pain for others. As far as diagnosing IC, Dr. Dell uses a 3 page "survey". His research has shown the survey is as accurate in diagnosing IC as any test.
Remember...you have your rights and saying no is probably the biggest one.
I am so sorry you are having so much pain.TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985
Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
I post to encourage and offer total support for rescue instillations.
Find me on facebook: L. Clark Thomas
LouannComment
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Originally posted by sailawaygrl View Post
My urodynamics was one of the most traumatic experiences of my life -- right up there with shattering my ankle and having a miscarriage. And this was with a VERY well-respected urologist who has penned many, many IC studies.
Way back then it was really the first line in getting a diagnosis. The second was the cystoscopy/hydrodistension. I've had them all. None were enough to give me a clear dx of IC. Until a few years ago when they began to trust patients enough to go by history. Thankfully I now have supportive doctors who agree that 15 years of chronic pelvic pain is some form of IC, regardless of what those painful, invasive tests showed.
Sorry you had to go through this -- my wish for you is that you find an advocate for you who will not put you in any additional pain just to prove a point or bill your insurance for more $$$.Mom to two littles (remissions while pregnant/breastfeeding)
Sufferer since mid-90s
Finally dx'd properly much laterComment
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Bladder biopsy
Has anyone had one done? Was it worth it?
Thanks! Still searching for answers...and a diagnosis of some sort!
Maria
Current medication: Soul-searching
Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.
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I had one
I had one because when they did a cystoscopy they saw these growths that looked like dark moles. My mom and sister both have had melanoma so they bx them to make sure it wasn't that. They were like scabs which the Uro told me confirmed the dx of IC. Was a little uncomfortable because they lasered down my trigone area.
SuzanneComment
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