Thread: need some advice!
01-03-2005, 02:27 PM #1
need some advice!
OK I need some advice here. This might turn out long and I apologize. But I feel like I have all this info and don't know where to start. I first felt the symptoms of IC 5 years ago and went to a urologist who told me I had IC, then changed his mind, then changed it again. He did a cysto on me but I don't remember talking about the results. I stopped seeing him. I went to see another doctor who did a ureteroscopy on me and I ended up in the hospital for a week. So I stopped seeing him and quit the whole doctor thing for 3 years. I finally just went back to see another urologist who did only a urodynamics and told me he really didn't think I had IC but he would treat me as if I did. He never saw my cysto results, I never had a potassium sensitivity test (as I'm hearing is a good test to tell if you have IC). Anyway, I'm only on Elavil and Detrol and the last time I saw my uro he said he'd see me in 4 months. I still have symtoms tho and they are really annoying. I also have never told a gyno my story because I felt like I didn't have to. Also, the gyno I see has "CNM" after her name, what does that mean? So I feel like I've never been checked out to see if some of my symptoms are not related to the bladder. Does anyone have any advice for me, I just don't know what to do at this point as far as even asking for other treatments whether they are oral or other. Thanks for listening!
01-03-2005, 03:12 PM #2
I don't know what that means after your gyn name but i feel if you feel you can trust your gyn talk to them about it tell them your story this may be a good place to start.
if you haven't already please read the pat. handbook this will give you more ideas on the diet and some treatments for i.c. you can copy and print this information off and take it with you to your next appt.
i'm no doctor but i believe its important for any i.c pat. to be on something to coat there bladder like elimron or dmso treatments or a cocktail treatment.
i hope you get some answers soon please keep us up today
sending you hugs and prayers
RhondaMedicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
01-03-2005, 03:16 PM #3
How close are you to Long Island? Dr Moldwin, highly recommended IC specialis is there, i forget the town but his address is on the site. there is one suggestion, if you read his book also availble on this site, you will understand why.
aside from that, I would do some research on reputable uros/who specialize in IC and get a firm opinion/DX. its so hard to steer you in the right direction with such a flip flop of opinions.
It is too bad that in all this time, if IC was even suspected, that Elmiron was not prescribed, as it takes months to work, but can be a very effective part of your treatment plan.
I personally was dx'd by hydrodistension/cystoscopy under anethesia...i know many have here as well. i don't really know much about the PSTest, but many here do and have had it.
Stick around, there is much too learn here and great folks always willing to reach out. My advice is pretty thin, but others here are very well informed on options. I would also have a very frank discussion with your GYN, as its a very diagnostic part of your overall health. Mine is the one who first dealt with this with me.
Please check these out on the main network @ http://www.ic-network.com/
Last edited by Betsie; 01-03-2005 at 03:17 PM. Reason: typo queen strikes again! ;)~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~"No one can make you feel inferior without your consent."
Eleanor Roosevelt, This Is My Story, 1937
01-03-2005, 03:49 PM #4
There is a link in the handbook that has a doctor list you can check and see if there are any in your area. Getting a diagnose would help you and you would know for sure if its IC. My Gyn did help me get on the track. She was not able to treat me but helped point me in the right direction.
Good luck and hope you get some answers soon,
KellyTo the world you might be one person but to one person you might be the world..
I am a newbie Angel ~IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
01-03-2005, 04:03 PM #5
I go to a urogynecologist. He's very helpful because he sees the connections between all of my symptoms, and has pretty much deduced that I have IC, possible vulvodynia, and definite pelvic floor dysfunction. (Hey, at least I can fix one of them!)Oh goodie, goth mimes. The best of both worlds. They pretend they're trapped in a box and then whine about how cruel and unfair it is.
01-04-2005, 02:46 PM #6
CNM usually stands for Certified Nurse Midwife.
01-04-2005, 05:02 PM #7
If you are still in pain, my suggestion would be to telephone your uro's office and ask for another appointment before the four month one. If the meds you are on aren't working, there are other options to try. You'll find information about the various treatments in the Patient Handbook at http://www.ic-network.com/handbook.
Sending healing thoughts,
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
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.
Anyone who says something is foolproof hasn't met a determined fool
01-04-2005, 11:48 PM #8
- Join Date
- Mar 2004
I would check out the listings for urologists in NJ, NY and PA depending on where in NJ you live. I would also ask to have a cystoscopy done under anesthesia to get a definitive diagnosis. When seeing a new urologist mention all the difficulties you have had in getting a diagnosis and how you feel no one has ever explained exactly what is going on. If you are happy with your Gyn-CNM stands for Certified Nurse Midwife, by all means talk to her about it, if you are not pleased with the care you are receiving from her then switch. Good luck! Judith
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