Diagnosed by 3 Urologist w/IC but is it really IC?

[MommwithIC]

Hi!
I have posted in this forum before. I am farely new I tend to lurk more than post....
My story is long for just being diagnosed 18 months ago...
Next week I am off to my 4th urologist.....
My mother always told me I have to be my own helath advocate and I am not stopping till I find a Urologist that actually cares and wants to help me.
I am curious though on how many out there think it might be something else and how do I know if I really have this?
My child was delivered 18 months ago via c-section. When they removed the catheter I had the most excruciating horrible pain I had ever experienced for months. I was put on antibiotics then 5 months after my child I went to a urologist. He was uncaring and just RUDE.
He did a scope of only ONE side of my bladder. There were 4 pics he gave me. 1 looked just like normal bladder but the other 3 were red and looked like what it would if you had scraped your knee on the concrete.
Then he circled this weird looking thing on one of the pics and said it was a dissolvable stitch that had not yet dissolved from my c-section.
he offered little more than that and i left confused.
The next 2 UROLOGISTS diagnosed me based off of a sheet i fliled out for IC. One did a potassium sensitivity test and i barely felt anything.
I have been in what is described as a constant flare since January of this year.
I have tried everything under the sun and not a thing works. I am on the IC diet - just started. I feel no relief. I know that this takes time but I wonder if it is something else...
ALSO
when they talk about bladder spasms and pain what and where is that. I just am so confused. I cant get any dr to help me.
I do get what I think are uretha spasms as well as uretha nerve pain. I also tried kegals last week and had horrible nerve pain shooting down my legs after that....
Im just curious if anyone else out there might think that they have something else. Also when the doctors ask me ?'s about bladder pain i practically beg them to show me where the pain would be.
My flare type pain is down in my vagina area. I burn around the uretha and have constant nagging 24/7 pain that is not made worse or better by anything....
im just curious!
thanks!

[Linda May]

AZO pills at walmart help some, hot water bottle on your stomach may help. You need to be on a treatment plan that will work with you. Also you need to quit being in denial so you can start a treatment plan asap.

[MommwithIC]

Thank you Linda MAy for your response! I really appreciate the time~
I wish I was in denial. I just really do not understand how nothing I have tried over the last 18 months has worked. I have spent so much money, time and tears trying everything under the sun. The first dr I went to I called him crying telling them i was in so much pain i wanted to die - at the time i didnt know but i was also experiencing post-pardum (sp?) depression. The nurse coldly told me that they have tried every medication with me and that I just need to go to the ER.
He was the only one that has actually gone in and looked at my bladder.
Secondly I have had to get pain management pills from my psych dr who treats me for ADD as NONE of the Urologists I have gone to will prescribe them to me. They seem to be the only thing that will dull the pain a dab. I take them when the pain is at the height of being unbearable - then I only take a half or forth of it....
I have to have something because otherwise I would be in bed crying because of pain and i just cant do that to my 18 month old. She is starting to identify with crying/feelings. As I have been in pain a lot lately crying...
The urologists I have gone to seem to think that the pain pills will make me a addict so they tell me they wont prescribe them. I just need something to dull the pain on the really bad days.
Then the last 2 I have gone to told me to take things that irritate the bladder like asparagus and cranberry juice. I have done all of my own research and know that is a no no. so that is why i am on to my 4th...
I am just wondering if anyone else thinks it might be soemthing else....
this just came about after a c-section. maybe it is hormone induced or maybe there is a stitch that didnt dissolve like the original urologist saw in my the scope....

[greeneyes]

So sorry you are hurting, some of us with IC also have Pelvic Floor Dysfunction ( may be you have this as well). When I was diagnosed I didn't know what IC was, imagine my surprise when I started googling it! I am one of those who hurt after sex and my Uro told me to have a glass of wine or beer, REALLY don't you know what that does to IC so I've changed to a Uro-Gyno not sure what to think of him yet. If you have to keep going to a new Uro then do it until you find one that you're comfortable with.

[ICNDonna]

It sounds very much like what you have is IC. Are you on any medications for IC? I don't know how a cysto could be done on just one side of the bladder --- it may be that there is more inflammation on one side?? The diet can take some time to work so I suggest you try to hang in there for a while to give it a chance.

Sending healing thoughts,
Donna

[Jinny Jean]

Dont give up! The diet took a while for me too.. I wanted reliefe immediatley... and it didnt happen... but now that i have given it awhile it seems to help if i am careful. I know what it feels like to have no idea whats going on and no one will help you. Drs are there to know what going on and lots of them dont. I had to go through a few. I have a specialist appt in Aug and im hoping to have some answers then. Today im going to get my hormone levels checked, to make sure they are stable... I am on elmiron as well as hydroxizine. My dr last time I went told me `sometimes these things happen and then just go away` yeah yeah... well I pray for that every day!!! HELLO!!! lol... anyways, dont give up keep looking for someone who will help! Im still on that road to!

Jenn

[earthlady]

I think a lot of us have wondered at one time or another if what we have is really IC/PBS or something else that has the same symptoms. I was diagnosed with pelvic floor spasms and also IC but sometimes I still wonder about it being the correct diagnosis. I'm on my third uro now and currently ok with this one as she has been treating IC patients for a long time and is ok with dispensing whatever is needed. I do hope you find a dr. that you feel can help you. It gets very frustrating. I would go to whoever you can until you find one you feel comfortable with. There are several things that can cause the same symptoms so I don't blame you for wanting a correct diagnosis.