PDA

View Full Version : Confused about IC


nicolebyrd
04-08-2004, 03:39 AM
Hi. I want to share my story in hopes that someone may have some insight for me.

At age 16, which was 15 years ago, I began having feelings of incredible urgency, frequency and burning upon urination. At times I could not control my bladder and was incontinent of urine even at work. How humiliating!! I saw my family doctor who tested my urine and told me I had a UTI. I was treated with antibiotics - back then with the standard 10 day course- but my symptoms did not resolve completely and after the course of
antibiotics they came back as severely as before I started the meds. I went back and the doc prescribed a stronger dose of antibiotics. We went this route for six months or so. Unfortunately I did not have an incredible support system in terms of my family, so at 16 I basically had to take charge myself. About every time I went to the doc (a general practitioner, by the way) he would have me give a urine sample and then would do a pelvic exam. This was puzzling and a little annoying because he saw the same thing every time - NOTHING. Finally, I called his office and requested that he refer me to a urologist. Unbelievably they refused (I really don't know why) but I was very persistent and finally they agreed. I saw the urologist who immediately ordered an IVP and a couple of other tests where they injected dye to look at my urinary tract anatomy, instilled dye into my bladder, and also a voiding study where they watched my urinate fluoroscopically to observe any problems there. I cannot recall what was observed during these tests but my urologist immediately ordered a cystoscopy. I had the cystoscopy and he told me I had chronic interstitial cystitis. I was started on meds for an 18 month course, which finally stopped the urgency, burning and frequency. During and after this time, my bladder was very sensitive and if I did not drink enough water I would get the symptoms back.

For years I have had UTIs - or what we have called UTIs - and have been treated with Macrobid.

There was one episode where I was in between family doctors and got a UTI. I called my previous doctor's office and they gave me a prescription due to my previous history of these symptoms. I began the medication, like always, and I felt a bit better but then my symptoms came back before I had completed the course of antibiotics. I tried making an appointment with a new family doctor but being a new patient, I could not get an appointment for a month or so. This was incredibly frustrating. Finally I resorted to the emergency room. What a joke. I was told that there was no sign of infection in my urine and that it could not be an infection. I was incredibly frustrated because at this time I was feeling pain in my back as well. I started to cry and asked what I was to do. He said "I can do a pelvic exam and see what I find". I agreed because I just had to get rid of these symptoms. He told me that I looked a bit irritated internally and that must be the cause of my discomfort. Probably a yeast infection - which I NEVER get. I was unsure what to do but I said okay. I did not agree with him but he was pretty persistent about his diagnosis. He took some cultures and gave me a treatment in pill form for the yeast infection.

Of course, this pain and symptoms persisted and I did not know what to do. I started calling doctor's offices again, convinced that I just needed stronger antibiotics. FINALLY, I found an office that would get me in that day. I saw the doc and he told me that the ER fiasco was ridiculous. Of course my urine did not show any infection because I was being treated with antibiotics already but the presence of my symptoms warranted stronger antibiotics which he readily gave. My infection cleared up and I was extremely happy.

I found a general practitioner in my area and went in for a check up etc to start a history at the office so if there was another emergency, I could get some meds. This doctor recommended that I take Macrobid prophylactically when I had intercourse with my husband. This has decreased the amount of symptoms that I get thankfully.

My husband informed me last week that during oral sex - please excuse the directness - that he noticed the smell and taste of urine even after I had just showered. This was terribly humiliating but my husband is wonderful and I realize that I needed to know about this. I started being more conscious of my bladder and its goings on.

I had a hysterectomy in 1999 for carcinoma in situ of the cervix. He says this problem started after my surgery. I began to wonder whether something happened during surgery to make my bladder leak, but quickly ruled that out because I never have wetness that would lead me to believe there was leakage. Then I thought about my diagnosis of chronic interstitial cystitis and began reading about it online. I found this website - which is incredibly fascinating - and have discovered through reading the message boards that I have many of these same symptoms as other people with IC.

I am always aware of my bladder. I urinate more than anyone I know. If I do not drink enough, I get pressure and strange sensations in my bladder. After a BM I often feel symptoms. I have low back pain frequently - previously not relating this to IC. I feel a sensation in my bladder frequently which is hard to explain but can best be described as a feeling associated with sexual arousal - but different at the same time. There are times when I have urgency and definately frequency. Sometimes burning. All of these unassociated with bladder infections although at those times I do normally take a Macrobid "just in case".

I guess I am wondering if I should go see a urologist again. Maybe to request a cystoscopy to see if the diagnosis years ago was correct and to see if I still have this disorder. I do not like the problems it is causing in my sex life nor the way it affects my daily life. When I do get what I call a bladder infection, I cannot function productively. I cannot be more than 10 steps away from the bathroom because when I feel the urgency, I mean it is urgent. I don't know how many times I have been incontinent because a doctor has requested that I come to the office. What a nightmare. The burning is soooooo painful and I get chills and pain all through my body.

If anyone can offer any advice, I am very willing to listen.

Thanks!
Nicole

HillaryD
04-08-2004, 04:33 AM
Nicole,
I am sorry to hear that you are going through so much. If you were already diagnosed with IC then you definately need to go back to a Urologist, because you will probably need to be put on medications (not antibiotics). I was diagnosed a month ago, and have been put on Atarax, Elmiron and Paxil CR. From what I have read the medications I am on are the typical medications for IC, or similar to them. I know how frustrating it is to have IC for many reasons and it is definately interferring with my sex life with my husband. We haven't had sex in over 4 months and it is really wearing on us. I am trying to think positively though and I know that one day I will probably be back to normal and I pray everyday for my IC and for everyone on this board. I wish you the best of luck in finding a Urologist and I hope that you can get some relief soon.
:kiss:
Hillary

Dixiefireball
04-08-2004, 05:03 AM
:welcome: to the icn sorry you have been going threw so much since you was already dx with ic you need to get back in with a uro who knows ic and who can give you treatments you need to be on your medicine for ic i do understand what you have been going threw i do have chronic interstitial cystitis. i have a true infection right now and something is killing my kidney it hurts so badly.:( my doctor is a truely wonderful doctor but i have fussed about that kidney so much i don't think they believe anything is diff even tho i know it is or the rn isn't telling my doctor everything she should be.:confused: :headbang: i do believe that is what is happening.
have you tried the ic diet??? that could also be helpful to you. please get back in with a doctor who understand ic and get your treatments asap.
i take my own dmso at home and that has helped me more then anything. with pain medicine and other medicine for ic my klonopins 1 mg also helps with the ureg.
sending you hugs and prayers
Rhonda
please keep us updated on how you are
:pray:
if you would like to talk please email me or pm me even if you need to vent i do understand and i do care.

dyno
04-08-2004, 05:18 AM
I was diagnosed 29 years ago, and have always had the frequency, and sometimes urgency and pain if I flare. I had a bad experience at age 16 when I was diagnosed and did not go back to a urologist for years. Long story short, I went to a new urologist in the summer of 2002. He looked at my medical records from when I was diagnosed by cysto/hydro, talked to me, got my history... and told me that I was classic IC. He took a urine spec, checked it in the office and sent it away to check for cancer. He told me he can just about tell from history if a patient has IC.

My point in all of this is you may not have to have another cysto, just go and get into a uro, take your medical records and see what he says. If indeed it is IC he may start you on some medications and see if they help.

http://www.ic-network.com/handbook/

Look through the handbook at the different treatments. Some uro's use the potassium sensitivity test as a diagnostic tool. I wish you well and if you have anymore questions we will all be here for you.:)

tillysav
04-08-2004, 05:36 AM
:hi: Nicole,

It all sounds familiar. If you have already had a diagnoses of IC in the past, then it would help to see a URO and be tested again to be certain. There are other meds for IC, not antibiotics, that help with IC symptems.

I also went through several doctors and ER trips with no resolve. This went on for years. My General Practitioner told me "it was a WOMEN thing" and "bladder spasms are common in WOMEN" The pain was incredible and I would always get chills with pain and when urinated. The symtems and pain were definately physical, but I was treated as if it were all in my head. After referral from GP's to URO's to finally an IC Specialist I was dx'd with IC and got help.

Finding a good doctor is half the battle. Hope you get help and feel better soon.:grouphug:

ICchell
04-10-2004, 09:15 PM
I have been Incontinent before...i was afraid to leave the house...it was so humiliating!!...turned out I had a bladder infection. ..and pyeolnephritis.

Tilly ,I cannot believe your GP saying that "its a woman thing and bladder spams are common in women":rolleyes: ...it must be a guy!!


Nicole,Im so sorry that you are in so much pain.I hope you find some relief soon!!Maybe a new Uro that treats IC?
Hugs,Michelle

ICNDonna
04-11-2004, 02:56 AM
:welcome:

I'd like to add another welcome to the IC Network.

I do think the others are right in saying that you need to see a urologist. And if your insurance is HMO and your current doctor is not willing to give you the referral, it's time to find a new primary care physician.

It does would like you might have IC.

Warm healing thoughts,
Donna

aantol73
04-26-2004, 04:46 AM
nicole...
I'd go to the doc again... you know your body and you just have to stick to your guns until someone listens.... most of us have been through it so stay positive and DON'T GIVE UP
good luck:pray:

kelly McC
04-26-2004, 05:48 AM
Hi Nicole,
Just wanted to say:welcome:
I would as others suggested go to a urologist.I was given antibiotics for almost 18 months with continued pain,frequency and urgency until being diagnosed. Now I have other medicines that help. I did have to change doctors many times until I found ones that could help me. Best wishes and hope you can get some relief soon
Kelly:grouphug: