Not sure of IC yet- but inside I know it

[Aimedes]

Hello, I wanted to introduce myself. I am 25 and I started having "bladder problems" about 3 1/2 years ago. It started with a horrible bladder infection that had me in tears unable to walk. But it seemed like the whole area (down there) was just out of control. Antibiotics cured it, but not for long, and it seems that ever since then, I have had infections or just the symptoms of them almost every day. Sometimes they come and go several times in a day!
I remember being at work and standing and the pressure and the burning inside would be so painful, I would nearly pass out. I have taken (I think) every antibiotic on the planet. Sometimes they help, sometimes not. I have been to two doctors now that think that I have IC. I have my cysto-hydro test in a week. I don't know what the test will say, but from nearly everything I have read here, it sounds like I am on the right track to discovering what has been wrong.
If I get stressed out or cry, in an hour, I am in agony. If I drink gingerale or diet pepsi, same thing. Wine or beer- forget it! When I get the painful urination, I also get so sensitive down there that I feel like I have a yeast infection, but the gynos say no. Also, I was reading in another post here how a woman deals with this sensation of being aroused or stimulated all the time. OH MY GOSH- that has been driving me crazy! One urologist told me it was probably psychological, but I didn't buy it. It's too uncomfortable and strong of a feeling and I try to do everything in my power to ignore it. Sometimes I want to pull my hair out. It feels like a muscle spasm or something. And sex is definately the last thing I want because I'll just feel worse. I have chronic crampy feelings in my lower abdomen and sometimes sharp pain and I deal with irritable bowel too.
I just want to say that despite these issues I have been pretty positive about all of this, but sometimes it has been soooo frustrating and embarrassing, especially since none of my family or friends really understands. I always try to just pretend it's not there and live my life like I want. But it is almost always there and sometimes I am so irritable and disheartened, not to mention exhausted. Luckily, my boyfriend and close family and friends don't think it's all in my head. They've seen me when I start sweating from the pain and pounding water and pyridium.
I am not trying to harp on all of my problems, and I know that there are people who have it much worse off than me. But I am so grateful that this network exists. Sometimes I have felt hopeless and a little out of my mind. These symptoms have affected nearly every aspect of my life and it almost makes me want to cry out of relief to know that there are answers and things that I can do, and most importantly- other people who understand.
Thank you so much to all of you who have told your stories. I hope after I get over the initial shock of "WOW-I am not crazy-there's a reason for how I feel!!!" that maybe I can help other people too.
Yours truly, Aimee
Oops- I just realized that I should have posted this in "Not Diagnosed Yet" --Sorry! :)

[vm]

Awwww, you sound like you have such a great attitude. :kissing: Welcome to the ICN :welcome: - so glad you found us. I don't know what I would have done if this place hadn't been here when I was trying to figure out what was going on. It is such a great source of support, comfort and information.

How you are feeling is so normal - I felt very similarly before I was diagnosed and for some time afterwards. The good news for you is that most people with IC do go on to find treatments that help them get their lives back. Hang on to that hope, OK? I hope your cysto w/ hydro is helpful in figuring out what is going on in that bladder!

[ICNDonna]

I also would like to say :welcome: to the IC Network. Have you found the Patient Handbook? It's at http://www.ic-network.com and contains the IC diet. I suggest you begin an IC diet right now, especially since you already know sodas are an irritant. For some of us, diet helps a great deal --- and it won't effect your being diagnosed when you have your cysto with hydrodistention.

Sending warm healing thoughts,
Donna

[JAMIEL]

Welcome to the ICN....I am also from NJ (Bergen County) so if you have an questions about doctors, support groups, etc... let me know! I am sorry you are having such a hard time but you are in the right place. I got diagnosed Jan/04 and this site has been so supportive and informative.

Please let me know if I can be of any help!

Hugs,

Jamie

[Katrina]

:welcome: to ICN!!!!!!!!
IC is affected by stress but not caused by it. You do sound like you may have it. I am one who beleives in our instincts about ourselves. I hope you find a uro that gives you the correct diagnosis and doesn't tell you it is psychological.
http://www.ic-network.com/handbook/ please look at the handbook. It has an IC diet which you should definatly try....along with Prelief. Please come back and tell us how you are doing.
:grouphug:

[Rosalie]

:welcome: You certainly have come to the right place. Its like an oasis in the desert of ignorance about this disease.
I too am waiting a diagnosis. I had my cysto last tuesday and see my Uro on the 16th. So many of your comments hit home with me as I am sure they did with every other member of these boards.
The frustration and feeling like your are going crazy is a common thread in all our stories. Rest assured, that help and support is right here. You will also find some lighthearted threads that lift your spirits on a bad day.

Do try the diet, heating pads and special cushions, they are a great relief.
I also found the other day, the suggestion to try bi carb soda in water. It reminded me of getting dumped in the surf and swallowing sea water but, who cares. it really helps. ( It also reminded me of the hunk I was with that day, bonus!)
Good luck with your cysto/hydo next week. Be gentle with yourself.
I look forward to hearing how everything is going with you
Rosalie

PS . This has nothing to do with IC but my 16 yr daughter just rang to say she got me my Greenday ticket :woohoo: (sold out in 5 minutes) . They will be here next march. I am one very excited fan. Just had to tell someone! :woohoo: :woohoo: :woohoo:

[Dixiefireball]

I wanted to add my :welcome: to you.
These great women here have gave you great advice.
Please let us know how you test come out.
sending you hugs and prayers
Rhonda

[SharonA]

:welcome: I am so glad you found us.

I remember the first day I came here. It was amazing!!!! There were other people out there who knew and understood everything I was feeling...pain, confusion, fear...name it and I was feeling it. I thought my life was over and I would never feel "normal" or pain free ever again.

It took some time and work on my part, but I have found treatments that have given me back my life. Yes, I still have IC and yes, some days my bladder decides to remind me that it is there. The good news is that my good days far out number my bad ones.

There is hope and there is life with IC... :)

[Aimedes]

I just wanted to say thank you to all who replied to me. Sorry I didn't get back sooner. I can see that this is a really supportive community and that you all care about each other a lot. That's very beautiful.
I'll keep you all posted on how my test goes...
Thank you again for the kind words and welcome.
-Aimee

[VickiB]

I just wanted to add another (though late) welcome to ICN, Aimee. The title of your post is one I might have written last year,.."Not diagnosed, but inside I know it." I do believe the time prior to having an answer to the awful thing that's going on inside you has got to be the worst! For most of us, things do get much better though, so hang in there!

Good luck with your cysto-hydro!

Vicki

[traceann]

Yes, I would like to add a belated welcome also (hard to keep up sometimes since I only have a computer at work, and sometimes these people here actually expect me to work! Sheesh, the nerve of them, lol ;) )

I could totally relate to your post. I knew it before I even ended up in that first nasty flare that lasted about a month. I printed off some info here, waaaaaay before I saw my doc, and showed it to my boyfriend and told him I would bet my right arm that is what I have. And I even asked my doc about it when I went in for what felt like a UTI and he was reluctant to think about it!

I had been in his office for my yearly in Sept and complained about how my urethra hurt when I went to the bathroom, that if felt like peeing broken glass, and a need to "bear down" that happend spontaneously sometimes and would actually bring tears to my eyes, I was given Ditropan. And I felt stupid cause at that time it wasn't happening everyday, I would have good days and bad days (now I think that was food-related) and he looked at me like I was nuts. lol. Then back in early Sept for a UTI (found white blood cells?) so I was given an antibiotic first before we "thought about IC", well the feeling never went away after 7 days of antibiotics and now my bladder was in on the pain act, I went back in for another urinalysis, and it was "clear", so I was given the elmiron to start, cause he felt that with my history, and filling out the questionnaire he felt IC was what I had. Yikes. I felt like screaming I told you so! LOL, but I can't change the past, just keep plugging along and I have noticed between being very strict on the diet right now (I want to give my bladder every opportunity to have a chance to heal as best it can before I get a little "wild", lol), my elmiron, ditropan and vistaril I am feeling a little better everyday, more and more like my old self, only now one who has to pee 25 times a day, lol. My boyfriend got to witness the out-of-control Tracey during that first huge flare, I was eating tylenol like it was candy just to function and stay semi-sane, I was a mess, tears, panic attacks--ugh you name it I felt it!!!!! For me I would say the diet has been the biggest help, made a huge difference in my pain, HUGE. So if you haven't gone strict on it, try it, it's not as hard as it seems, pain for me was a huge motivator! LOL

Take good care of yourself!!!!

Warm fuzzies,
Tracey :)

[kate118]

Welcome!

You sound very certain that you have IC. I was also absolutely sure I did before having cysto with diagnosis.

Actual diagnosis was very weird for me, tears of joy and relief from finally knowing and having documentation of my illness--- to tears of despair and sadness when thinking of living with chronic illness.

Best Wishes to You in your pursuit of medical help for your condition.

Kate

[Sarojini]

Just wanted to add yet another belated :welcome:

I hope your cysto/hydro goes well and I hope you come back and let us know the verdict! Good luck, and I hope your docs are able to give you some meds to get you back on track ASAP.

[mysocalledlife]

Hello, i am new here, I was just diagnosed two months ago after what felt like an enternity of pain and anguish. My doctors dont seem very sympathetic or really understand my condition. Is there anyone who can tell me where to find someone who specializes in IC in the Miami area? I feel so out of it. I dont know where to turn. The pain and the frequency is awful. Thank you

[Annie2]

Mysocalledlife, welcome to the ICN. I am so sorry you, too, have been diagnosed with IC. The patient handbook on this site is full of valuable info. I suggest you check out the physician resources listed there at http://www.ic-network.com/handbook/mdlocate.html From this page you will find several links that may help you locate an urologist experienced in treating IC. You will find the ICN has a list of IC knowledgeable physicians. Also, you will find a link to the ICA who, if you submit a request, will send you a list of physicians in your area who are experienced in treating IC.

Finding the right doctor to work with you is so very important. I hope these resources will help you in your search.

Annie

[LeahT]

I too am a newly diagonsed IC patient after 9 months of going through all of those above mentioned procedures to check for this that and the other. It was a urologist who right away recongnized IC, set me up for a cystoscope and hydro-- and biopsies. And it was confirmed just last week. I'm 49 and used to be so active, I mean, I was like up and at'em right away to do my chores at 4:30 am. :woohoo: Now, for the last year, I've not slept a decent night and I'm lucky if I don't drop by 10 in the morning. I can hardly wait to go back to see my urologist next week and start on medication to help with this abomidobal persistent pelvic pain. Been on the diet for a week and already feel much more in control. A great side effect has been losing a little bit of weight! Also, once my uro recommended this site, I have discovered so many little thing that help me understand or explain to someone else just what is going! Like when my new friend above said that "it feels like your urethra is broken glass" I thought YES!! That's it!!! Funny. Thank you all. Leah.