Question about type of pain?

[jessicab]

Hi all,

Have been struggling to find out what is making me feel strange for the past 6 months and recently saw a uro-gyno who told me that i have no infection and my bladder fills and empties normally. She suggested interstitial cystitis; I had no idea what that was so I went to do some research and here I am- what a wonderful resource this site has been!

I am just curious because what baffles me most is that the type of "pain" i have- and for awhile I was hesitant to call it pain because it was nothing like the pain I had ever known- it seems very bizarre. It isn't at all like shooting or stabbing pain, or even really like cramps. It's more like an extreme discomfort that won't go away in my abdomen, just a little below my bellybutton. The best way that I can describe it is that it feels like there's poison or a foreign invader in my body or as if there's not enough space for all the stuff down there; I just know something isn't right.

Clearly all IC-ers experience pain differently, but has anybody experienced pain like this? I don't have much frequency- just a bit of pressure and sometimes I feel like I haven't emptied the bladder completely when I'm done. Just curious if any of you have any insight on this- I'd like to figure this out asap so i can get started getting well... thanks all!

Jessica

[Linda May]

yes many of us icers do experience your kind of symtoms. are you seeing a uro yet?

[jessicab]

i saw a uro-gyno and she scheduled me for an ultrasound, but i think i am going to find a good urologist soon.... she kind of brushed me off and i was really surprised that she gave me the possible diagnosis for IC but let me walk out of her office without discussing any treatment options, much less what the disease was....

[amy09]

I've been feeling the same thing.. never felt anything quite like it before. It's uncomfortable but not exactly crippling pain or whatever.. I do get some pains here and there but the more constant feeling is what you're describing (right below the belly button). And IC is all new to me as well so I'm still learning what the symptoms feel like, besides the frequency etc (although ditropan has helped with that I think). Anyway, glad you found us

[4realtho]

My pain is more lower and vaginal pain.. I have heard of others having your same symptoms though....

[cmclien]

Hi Jessica,
I have often used the same words you are using, not "pain" per se for me but yes, discomfort and pressure and a couple inches below my belly button which just happens to be where our bladders are. If I lean against a counter top I feel it much worse, its like a tenderness there. I happened to see my UG today and he said if you ask an IC patient where their discomfort is they will almost all invariably point to that location. If I push on the skin there its worse and I can feel it down to my urethra.

Btw welcome to the board, it is a great place for information and sharing with others who are in your same health situation. I think I read somewhere that you said you are 22? Is that right? Mine started in my mid-20's, I am now in my late 40's and luckily for me personally it has never gotten worse. I have finally decided to pursue it and try and "mostly" calm it down.

[jessicab]

thanks for your responses! i am so grateful to have found this resource. I think it's amazing how much the IC community has bonded together in the hopes of helping others to heal. i had been struggling with this and so confused by this new sensation in my body but learning more about IC and what it is have really helped me to understand what could possibly be happening to me, and also that this is a real type of pain that i am in the right to seek treatment for.

yes i am 22. cindi, you lived with the symptoms of IC for more than 20 years without any treatment? i can't even imagine! how often did you have symptoms? i have been having symptoms for about 6 months now (i'd say 1 week of symptoms, 2-3 weeks off...) and i'm ready to try just about anything for some relief!

well good luck, keep in touch!
jessa

[cmclien]

yes i am 22. cindi, you lived with the symptoms of IC for more than 20 years without any treatment? i can't even imagine! how often did you have symptoms? i have been having symptoms for about 6 months now (i'd say 1 week of symptoms, 2-3 weeks off...) and i'm ready to try just about anything for some relief!

Here is my story, I'll make it brief. First of all you have to remember I'm not in agonizing pain, my pain is not severe and I have been diagnosed finally with the mild version of IC. I have pain that makes it uncomfortable to sit etc. when its acting up.
In my 20's I was sure I had chronic uti's. I went on antibiotic after antibiotic and then for a long time I did the daily antibiotic. Unforunately, my IBS developed in my 20's too and it was really bad during those years so it took priority. The IC symptoms kind of came and went during those years, I had no idea diet played a role and ONLY drank coffee, diet coke or diet pepsi, never water or anything, no wonder why my bladder hurt.

The symptoms would come and go where it didn't bother me for awhile and then it would again and I was sure I'd have a UTI again, but generally did not. They would usually give me antibiotics and tell me to drink tons of water. In my 30's the frequency never really got better but I kinda would joke about it that I had a small bladder and usually going to the bathroom makes the pressure go away until an hour later when I gotta go again. I figured out where every bathroom was at the mall, at the grocery store at the drug store...you get the picture. I started drinking a ton of water because it was the only way my bladder didn't hurt that way but it was kind of a viscious cycle. I did start associating certain things to making it hurt more like tomatoes and coffee and tea and cocoa.

I finally heard about OAB meds about 10 years ago and I even saw a urologist because I was sure I had something like that. The one guy I saw told me I was too young to have it and I don't know, the whole experience left me feeling humiliated and stupid. Fast forward to about 5 years ago my GP prescribed me some OAB meds and they helped some but didn't get rid of that pressure/pain feeling. Finally got the guts to go see someone again last spring and go through some testing. And now here I am all these years later FINALLY getting treatment Started elmiron today though my UG likes to do the soothing instillations cuz he says they are successful. If the elmiron doesn't work for me, thats what I'll be doing come fall.