oh wait i have to pee!!

[mrspaquet]

my story begins in 1999. i was 22 years old and living on south beach, fl, surfing and spending time in the water. over the course of 2 years i had 4 uti's, 3 bladder infections, 2 kidney infections and a kidney stone. anti-biotics did nothing for me. i had had uti's in the past but not to this extent.

in 2001 i moved to cocoa beach, fl and was having symptoms of urgency and waking up at night to urinate which i had never done before. i had always been a heavy sleeper. i also recall all through school always holding it till i got home. now suddenly i have to go every few hrs. in 2002 i had the last kidney infection hit me on christmas morning. i opened my gift on 2 percocets!! that was also the first time that i went to see a urologist instead of just my primary. He ordered an IVP and a Bladder distension. i dont recall the results on the IVP but i do know that the dr. said that durring the distension the signs were extremely obvious. he then gave me a prescription for elmiron and some pamphlets and sent me on my way.

elmirion was very good to me. even taking just 1 or 2 a day. after about a year i lost my insurance and eventually ran out of meds. and due to various reasons could not obtain insurance until recently.

current day i am 32 living in miami, fl. thanks to my husband i now have insurance and just last week went to see a new urologist. he did a pelvic and vaginal exam. i also gave a urine sample and as usual they found blood in my urine. he said my pelvic floor is weak.

my regular symptoms are: frequent urination durring the night 2-6 times over and 8 hr period, at least 3 more times before 10am. durring the day i go about every 4 hrs. sometimes if im busy with work or not near a bathroom i will get a headache that sometimes goes away after i urinate. (i do also suffer from migraine with aura headaches and tension headaches) quite often just after i urinate i feel the need to go again. if i do go its very little. i have not had any more kidney infectons or obvious uti's. my bladder is kind of numb, it just kind of throbs and where you pee from stings and burns constantly.

my new symptoms and questions that i had for my new dr. (he answered fairly well but im wondering if anyone else has any input).
sensation of leakage when bending and coughing and sneezing.
i also have issues with IBS, stomach pains and loose stool.i am very regular and sometimes go multiple time durring the day. dr. said it could all be related. its the way my body is reading the nerves from this part of my body. i also find that i can sleep quite a bit durring the day and it does not affect my sleep at night. (only peeing gets me up)
does my bodys constant struggle cause me to have a lack of energy?

i also question issues with sex. i wonder if where i pee from is on fire is that causing me to have issues with orgasming? i dont really have specific pain durring sex but for me to have an orgasm requires an external mechanical device.

i drink mostly water, some lightly sweetend tea, no juice and rarely soda. i eat fairly healthy, moslty protiens and veggies, nuts and some fruit.
i have not had health insurance for a long time so i do not have a list of meds. i take 3 advil with a coke and a nap for my migraines. and drink adequate amounts of water.
new dr. gave me scrips for elmiron and vesicare. im still working on getting those approved.

[NickiPage]

I hope things get better for you soon!

I have also been through the mill on things, but the more I read of other's situations, and look at my own, the more I feel that some of these issues are related. Just about everyone complains of digestive issues of some sort and migraines (classic issues for me as well) and I am also very tired all the time and have a great deal of joint pain, swollen lymphnodes, and wonderfully great bloodwork everytime except for low potassium! My family doctor finally told me that he thinks I have Lupus and is running different tests and x-rays to check. He said it is a very under-diagnosed disease because it is very hard to catch the "bloodwork" right where it shows up when one is having a severe flare! I told him that is exactly my issue. I have a problem, call to make an appointment with a doctor, and by the time I get to see them a month or two later (the specialists that is), the symptoms are gone and I'm fine and feeling foolish for bothering them! He said that is a common case with this autoimmune disease. I have a crazy rash on my face and chest that gets a lot worse when I'm outside for any length of time and bruising and swollen joints... I don't know if it helps you to know my symptoms (I also have IC with the frequency, loss of control during coughing, sneezing, and vomitting), etc... but I am starting to see a pattern where a great deal of people keep mentioning that the IC is secondary to some sort of autoimmune disorder. You may want to ask your doctor (since he seems to really care) if he would mind screening you for autoimmune diseases since the IC should not be making so terribly fatigued (as you seem to describe). I also have insomnia as well which I noticed you seem to have trouble with too and I cannot say whether it is true insomnia or whether it is just from having to run to the restroom every hour or two! Either way, extreme and long term fatigue is not a cool thing and worth investigating in my own opinion--but obviously you need to take what I say with a huge pinch of salt because I am not a doctor and very knew to the IC diagnosis (just a couple weeks ago) and also the Lupus... but the Elmiron or diet change (don't know which since I started simultaneously) does seem to be helping me already in a short time so I hope to have a greater relief soon from the pelvic pain I've been having at least. I wish you all the best and feel free to write anytime! I may not know much, but can certainly be a sympathetic ear as I know these things are not always easy to deal with emotionally! All the best! Nicki

[VickiB]

Hi Mrspaquet,

It sounds like the Elmiron worked for you the first time. -Hopefully, once approved, it will work for you again!

does my bodys constant struggle cause me to have a lack of energy?

Sure seems to me that it could. And I would guess getting up several times at night to pee would probably keep one from getting a decent night's sleep, too, resulting in fatigue during the day. But this is probably one of those things to run by your doctor since it might stem from any number of things.

i wonder if where i pee from is on fire is that causing me to have issues with orgasming?

It does for me.

Have you found the IC diet page yet? http://www.ic-network.com/diet/ That page has a link on it, "IC Diet at a Glance (Cheat Sheet)", which was very helpful to me in the beginning. It lists food, drinks, etc, into categories as to how well they tend to be tolerated by those with IC. I'd say changing my diet was the one thing that had the greatest effect on lessening my symptoms. It isn't really a matter of eating healthy. Actually it was when I seriously began to make an effort to eat more healthy that my IC symptoms went through the roof. (I thought I was doing all the good when I increased my consumption of fruits and such! )

I hope you find relief soon!
Vicki

[sailawaygrl]

Hello and welcome to the ICN. So glad you found us and I hope that you will find a lot of support and helpful information here.

I just wanted to comment on a few things in your post. One is that you mentioned you take ibuprofen for headaches and I just wanted to share with you that some ICer's find that to bother their IC. You might want to try something else like tylenol and see if you notice any improvement in your symptoms. Also, you might want to take a look at the IC Diet, many people find that it does help them quite a bit. I know you said you eat healthy and that is great but you might want to check it out, there are some foods that tend to bother those of us with IC. You can find it under my link below to the Patient section of the site.

I am glad that you have insurance again and are able to see a specialist. Hopefully the meds will help you quickly and you can get back to full nights of sleep. I completely understand on the sleep during the day and night issue. I think that there is a lot of stress going on in our minds and bodies and that sometimes we just need that sleep to get better. Sometimes if we really stop and listen to our bodies, they will let us know exactly what we need!

Once again welcome to the group,
Sandra

[NickiPage]

How interesting!

Vickie, it is funny you mentioned that it was when you finally got so health conscious and thought you were eating all the healthy foods that your IC got the worst (all the fruit and such)! I have always wondered why I stayed so sick when all I pretty much eat is fruits and veggies (but they were all the wrong ones) and then add my pot of coffee a day into the equation and I had a real IC'ers nightmare concoction! :-) I already am getting some relief from the diet and Elmiron and I've only been doing this two weeks!!! I was told it could take several months but I am already noticing a pretty big difference already in the severity of the pain since I started. Take care! Nicki

[NickiPage]

Thank you for those helpful tips Sailawaygrl! I did not know about the Ibuprofen and have taken it a lot for the pain I've had. I am going to try tylenol instead as you mentioned too! I have a lot of joint pain which was why I took the motrin.... I am so grateful to you and others in this forum who really help us so much and encourage me too! Thanks!!!

[mrspaquet]

i do not notice that i have "flare ups" with my iC my discomfort is constant. over the past 10 years that ive had this issue my diet and habits have varied quite a bit and i have not noticed that my IC was better or worse. i drink more water now than ever before and i dont drink any coffee and rarely drink fruit juice or soda. more like a sip of my husbands cup never my own. i do feel like im just gonna be like this forever. im sure as soon as i get on elmiron my symptoms will reduce but then i have to be on elmiron forever.

[NickiPage]

It is not easy--I know....

but at least there is a drug--the Elmiron to help... I too wish I did not need to take anything, but I am grateful that at least there is something out there that can give us a great deal of relief! Hang in there honey. It will get better. I know it can seem really discouraging at times! Nicki

[ICNDonna]

I'd also like to welcome you to the IC Network. I also thing giving the diet a try is a good idea. I noted that you drink cokes --- which are a very bad irritant to an IC bladder, along with other sodas. Some of us can have root beer, but please approach that with caution when you feel better.

Sending warm healing thoughts,
Donna