My theory of IC

[Mimi-in-Chicagoland]

I had UTIs as a child. I also never had to pee. In college, my DH (then boyfriend) called me "camel". I started to pee more and thought that was normal. Then when we got married, I developed a UTI on our honeymoon...and then the IC set in.

My birth mother was on nasty birth control pills while she was pregnant with me...she didn't realize she was pregnant for 4 months. I also have endometriosis. I think my autoimmune system is out of whack. I had strep a lot as a kid...and lots of ear infections.

[Katrina]

I definatly think it has something to do with my immune system. I had major ear infections as a kid and doctors believe my colitis began already at age 8.

Doc says I have a weak immune system....always have low white blood cell count.

I am so multi diseased I can't believe one person can survive so much.

[Dixiefireball]

i had many uti as a child plus ear infection matter of fact i had to have tubes but in my ears at one point and time yes i have and had a weak immune system as a child and still now as an adult. so i agree that could also be the cause. I have thought all my bladder surgery as a child and uti is what caused my ic but to think about it it could have been both.

[kelly McC]

I had many many ear infections( tubes were put in finally) and lots of sinus infections and pink eye but never uti's until I had my kidney stones. Sick with one virus or another all the time ...hmmm makes me wonder?

[grammalady]

I've been reading about various theories for cause: micro-bacterial, "assault"....which might be continuous/numerous bladder infections, drugs......which in my case makes me wonder about that chemotherapy I had years ago, auto-immune, allergens, etc. Apparently there are few real studies being done, according to my uro. ( Maybe we're not being vocal enough?? ) Seems the best we can hope for is "control" of symptoms. At least that was his opinion.

How many of you gals have female urologists? Would you recommend that?

Thanks for all the input.

God bless.
Nita

:kiss:

[Sarojini]

Hi Nita :hi:

First, :welcome: to the boards!!!

As for your question about urologists, I saw a female urogynecologist for a while, but stopped... she was very pleasant when I did see her, but she was always really busy, and she cancelled 3 appointments with me in just a month's time! At that time, I hadn't even been diagnosed yet, and I wasn't on any kind of treatment that was working, so it was extremely frustrating, and it made me feel like she was making light of my pain.

My husband actually found the urologist I see now after I called him in tears after the third cancellation... and I have not looked back. My current uro is a man, but he is very sweet, and very compassionate. One of his particular interests is female urology, and his nurse says he has treated hundreds of IC patients over the years. I can tell... he is extremely knowledgeable about all aspects of IC treatment, including pain control.

:)

Again, welcome... you found a great place!!

Jen

[kelly McC]

Hi Nita,:hi: ,
I have seen 5 male urologist so far and I have been extremely frustrated and disappointed at my treatment. MY OBGYN is a female and she has helped me more than all 5 urologist have. I am still searching for a urologist that can help me but in my area and with my insurance there are 14 urologist listed and all are males. I dont mind if they are male or female if they can help me.:) My OBYN has been wonderful but has said she can only do so much so I am still searching for the right urologist for me.
My MD and my OBGYN say my uro is a wonderful urologist and that may be true but hes not for me.

[janelle77362]

Hi Nita,
I have a male urologist and he is the greatest. :thumbsup: I was really weird about seeing a male doctor since I have had nothing but female doctors my entire life but he really made me feel comfortable. He was very sympathetic and understanding towards my symptoms. In fact on my first visit he said to me "I know you have been having a hard time for awhile but I promise you that I will do my best to find out what is wrong with you and what we can do to make it better." :D I couldn't ask for a better dr. I did do my research though. I did ALOT of research and made sure that my dr. was a specialist in not only male urology health but female urology health as well. I really feel now that I am on my way to a normal life and I couldn't have done it without my male urologist.
Janelle

[kadi]

I also have experienced many levels of medical care & compassion (or lack of) this past year. The gender of the doctor hasn't been the issue, it's their quality as a human being. I've had both male & female excellent doctors and had some really horrible ones, again both male & female.

The main thing for me is that they thoroughly understand IC and are compassionate to the physical pain & losses we go through. :angel: They also have to be willing to be patient with how many quirks we as patients have. (Seems like we're allergic/sensitive to more than most people are & need a variety of treatments, usually with lots of trial & error over time---- these are special challenges that require highly professional medical personnel who know our illness well).

Good luck, for those of us still looking, there are several lists of doctors by region who know IC -available from ICN and from the Interstitial Cystitis Association.

[grammalady]

Hi Janelle, Kelly, Jen and Sarojini!

Thanks for sharing your experiences. I think you're right, we need to find a uro that KNOWS something about female urology, and has some experience with IC. My local doc is an ok uro for my husband.......but I'm just not happy with him. He may have head-knowledge, but his communication skills are terrible. And he's ALWAYS in such a hurry....you practically have to grab his coat-tails and say WAIT!!!

I looked on the ICN website and tracked down a uro about 1 hour from here....in a larger city..... Hopefully he will have something new to offer!! Fortunately our insurance provider does not require a referral, so I made an appointment for a couple weeks.

I do so appreciate the "ICN Handbook" website. There's SO much info there.

Take care, everyone!

God bless.
Nita:kiss:

[KelliK]

I always get the feeling that my urologist only knows how to treat 70 year old men! I feel really out of place when I walk into the office. That's why I'm doing as much research on my own as I can, so I can ask the right questions and prompt the doctor for answerss

[Sharon]

I think my immune system is out of whack also. Last year I was sick with a cold all the time. Sometimes I would only go two weeks in between cold.

I am still looking for a Uro also. My last Uro gave me plenty of compassion, but said he could not do anything for me. He didn't even try! Right now my gyno is the one helping me.

Sharon

[calmkiwi21]

I also had many UTI's as a child. Some of the UTI's I had though I didn't take medication for. I find since I was diagnosed with IC that I would get sick very easily so definitely my immune system has been weak.
As for Urologists the first dr I went to was a male Uro He did a cysto and told me it's only a little red and to just change my diet because he didn't believe in giving medication for it :cussing: . I ended up going to a Female Uro who has been wonderful she properly diagnosed me 2 years later. It did take a while to get to see her though.
Take Care
From
Amy :)