Thread: depressed and alone
11-09-2010, 10:35 AM #1
- Join Date
- Oct 2010
depressed and alone
recently diagnoised with ic, about 4 months ago. diagnoised with vulvadynia over a year ago. have been in severe pain for last 2 years. gyn basically told me i was crazy and refused to do anything other than neurontin over 2000 mg a day! could not tolerate it. would not make any referrals either. have been on elmiron since my cysto/distention. no improvements. in office instillations were sooo painful. no help. lyrica helped a bit, couldn't tolerate side effects. super, super, diet sensitive. my family has no sympathy. none. i am a pysch nurse, so i am giving all day, then am expected to take care of everything at home. accused of having anorexia by my husband! nobody i've talked to even knows what ic is. and my uro may spend 2 minutes with me if i'm lucky. meantime his nurse is whining about her "diet"!!!!!!: i also have lupus, fibromyalgia, migraines, raynauds, and hepatitis c. i keep hoping it'll get better, but it doesnt. i have no life. i know it doesn't seem like it, but i don't complain to anyone. i just want to know that there is something out there that may help. doctors that listen, and care. thanks.
11-09-2010, 10:53 AM #2
Oh my goodness
You are NOT alone!! Please find another doctor. I was just recently diagnosed and have had many of your same problems but you should not have to live in pain. Look on this site and try to find a doc in your area that treats IC. A lot of urologists don't want to prescribe pain meds but if you are in pain then you may need them. See if you can be referred to a pain mgmt doc or clinic.
I'm so sorry your feeling so alone. I felt the same way until I started reading posts here and people actually understood what I was saying. Which was more than I was getting from my friends. If they can't see it, then it must not be that bad. That's the reaction I got. AND they had never heard of IC and I didn't feel good enough to explain it.
I really do hope you'll think about a second opinion and you will read the posts of so many people here who know exactly what you're talking about.
11-09-2010, 11:45 AM #3
What Katie Said...
It does sound like a new doctor is in order, you don't need a doctor who does not believe in you or the illness that you have, you need a doctor that is on your side.
Do you have a good primary doctor? sometimes they can be your best resource especially if you keep them in the loop concerning all specialist visits. Your primary doctor could also help you find good Uro or pain management to explore more treatment options.-
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.
11-09-2010, 12:06 PM #4
I absolutely agree! You do need a doctor who understands and is willing to work with you to help you feel better. If you work in a hospital, I suggest you talk to some nurses from the urology unit and see if you can get some recommendations.
There are many, many treatment options available --- you just need to find someone who is willing to help you find the most helpful ones for you.
Sending encouraging hugs,
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
11-09-2010, 01:52 PM #5
- Join Date
- Oct 2008
Wow, you have such a demading job & are suffering with so many medical conditions. I think you are amazing for doing so much! Please find another urologist. If your gyn won't give you a referral, then find a primary physician asap, & get a referral there. Don't use your gyn as your primary. (Sounds like you need a new gyn too!) And tell your husband to come on here. We'll tell him how bad it is to have IC! It is bad enough for you to have lupus & all the other things. Please hang in there. We all understand how you feel. Glad you found us!
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