new here, bladder pressure.

[sl8twins]

Hi my name is Steph and I am 32.. I have been dealing with a bladder issue since 1998. I have seen 5 drs. and been given 4 different diagnoses. female urethral syndrome, chronic cystitis-urehral stenosis, mild detrusor instablility and had an IVP that revealed I had Medullary sponge kid. Disease. but that is still not for certain. No dr. told this to me until I read it in my files. I have never talked or met anyone that has the same symptoms as I do. I get a lot of pressure to where it will make my stomach be really bloated and it feels like I had to void. Some times I can void some times, I cannot. I went a long stretch of 4-5 months with no pressure or anything and I thought it was gone and I was healed. But just the other day, it came back full force. I have been crying and depressed because I cannot enjoy life it brings me down so much.. SO is there anyone out there that is going through this and knows what it would be.... I just saw another Urologist and he did a cystoscope again and said my bladder and urethea looked fine. so we did not talk much about the other diagnoses. Wouldn't you know it a week later I start having bladder problems.....

Anyway, any help or understanding would be appreicated..



Steph

[traceann]

Hi Steph, and welcome! I am so sorry you have had to go through all that, and that you are continuing to feel icky! I know and I think everyone around here does too, how frustrating it can be to get a diagnosis! And you have had your pick to choose from! I know for me, the "pressure" can be one of my IC symptoms, as well as the bloated feel. Before I was diagnosed, I wondered why I had to wear my PMS jeans more and more often (looser)! I hope you get some answers soon! When you had your bladder looked at, was it in the docs office or did they have you knocked out so they could fill your bladder and get a better look? I personally have not had the hydrodistention done, but from my understanding it gives the doc a better view of the bladder walls.

Here's a couple of links to help you out, give you some info on IC if you haven't found them already, while you are still trying to get an accurate diagnosis. One is for the handbook, and the other is for the IC diet. I know for me, the diet goes miles toward helping my bladder not to feel aggrivated! Seemed crazy that just by avoiding some foods my bladder would feel a bit better, but it worked for me.

Handbook:
http://www.ic-network.com/handbook/

Diet:
http://www.ic-network.com/handbook/diet.html#list


I know for me, I had the symptoms (pressure, feeling like I had a constant UTI etc) some five years ago now, and they mysteriously went away and I was good until winter of 2004. Finally broke down and saw a doctor in Sept of 2004, and the rest is history!

Just keep your chin up, and keep pushing to find out what is causing your troubles! If they decide it's IC, no worries! Yes, it's an annoying and painful affliction to deal with, but there are sooooo many treatments and combination of treatments, that I am sure you would something to work for you, as I and many others have. Now a days, I hardly think about my bladder at all. (my meds consist of Elmrion, Ditropan and Visataril) There is life with IC, many will tell you that -- myself included! The only bummer is it's a slow process, which forced me to be patient. Seems the only thing quick with IC is how quick it can make you miserable! LOL!!

So, once again, welcome and glad you found us! There is tons of support and info here, it's just amazing!

Hugs,
Tracey

[sl8twins]

I 2 cystoscopes one where they put me under and said that I had chronic cystitisis (which I do not believe I have). Then the other was almost 2 weeks ago in the office. WE are going on Vacation so I will not be able to get in to see my UR but I am not sure it is what I am eating.. Because my twin boys were sick and I got their nasty crud and I did not eat for 2 days and that was the worse and I was only drinking water. SO who knows.... I would love not to have to deal with my bladder anymore and if I have to be on meds to do it then FINE BY me. I just want to feel normal again.. I am so glad that I found these boards because know I feel more prepared to talk to the UR again and find out what is wrong so we can fix it so to speak.. Thanks so much for sharing your story with me. There are times when you feel so isolated and that no one understands..

Steph

[traceann]

Oh yes, I must agree. I do not know where I would be without this site, I shudder to think. I have learned so much, and so many coping skills here, that it really is a scary thought to have had to go through it all on my own. I would have been lost, as even my doc wasn't much help in how to deal with the day-to-day living with a bladder that was yelling at me all time.

For me the diet took a good 2-4 weeks before I felt any difference (I was soooo impatient, lol. I wanted instant relief!), at first felt like no matter what I ate or didn't eat I was in constant pain. I know one of my first posts was on the diet board asking just how the heck was I supposed to know what food was bothering my bladder when it just plain hurt all the time! I just wanted to scream! It did take awhile for my bladder to calm down from being so aggrivated for so long, but once it did, I was able to notice a change in symptoms with regard to what I ate. Good news was/is (and actually, I am still trucking along on the diet experimenting, and have been at it since Nov 2004) I am discovering that so far it's a handful of foods that bother me, plus the universal ones (tomatoes, pop, alchol, etc).

Just know that you can always come here, everyone is soooooo helpful, and supportive and you can ask any questions you want, or just vent!

Hugs,
Tracey

[sl8twins]

If you could send me your email that would be great. I have so many ?.. I Know that when I was not having any bladder problems for the 4-5 months, I ate what I usually eat and nothing. We did invtro and I was on a lot of hormones and that seemed to make it better and I am wondering if it has something to do with that as well. I basically eat low carbs and I only drink water. I do not eat a lot of the foods that are supposed to tear your bladder up so I am not sure if mine is food related.. But anyway, DO you have any pressure now.?>?? also how long did it take for the meds to work and if you eat foods that are not good for the bladder while being on the meds can your bladder still act up or will the meds stop that????????

Thanks for everything. We are leaving on Vacation today.. SO I will not be back until the end of JUly.

Steph