Not diagnosed yet, but I have questions

[cmduks]

Hi, I'm a newbie and need some answers. I am 51 years old, Female. I have 2 kids, (25/29) I have always had a weak bladder, the old, cross my legs when I pee, run into the house the second I get home to go. Hope I don't have a sneeze sneak up on me or I'll embarrase myself.

I have taken vesicare for the urges and frequency, it helps "some" but not much. I get up every night at least twice but usually 3-4 times. I get terrible sleep because I'm a VERY light sleeper and wake up everytime I turn over, naturally everytime I wake up I automatically think, "do I have to go pee?" to myself and even if I don't have to go, I can't go back to sleep until I get up to go because then my body betrays me and makes me think I have to go pee. So I go ahead and get on up and get it over with.

I have always had a problem with yeast infections (don't know if that makes a difference or not) about the middle of July I developed a yeast/jock intch type rash under my arms. I did all I could with over the counter stuff and finally wen to the doc for diflucan. He put me on a 6 week course of diflucan. About 2-3 weeks into it I developed a UTI I went back to the Dr. and it was positive pee test. So I had antibotic. I don't like taking antibotics because I almost died from c-dif a few years ago. Anyway, I got over that UTI and about 2 weeks later developed the symptoms of one again. It was driving me nuts.

The symptoms were odd. It never burned when I would pee, I just had the urge to go, like right this second! When I "wiped" it sorta itched but not really, it felt funny in the actual vaginal opening. But it was not like a normal yeast infection, I eventually got the OTC for the yeast infection that I really didn't think I had but took just in case.

I have for the last 4 months drank lots of tea. (decaf) I am on a diet so I use splenda to make my tea. (I live in the South and must drink sweet tea) I could drink about a gallon or more a day. I drink 2 huge cups of coffee each morning (decaf again) and use sweet-n-low. School started and I brought my tea and drink it sitting at my desk. I would get up and go to the RR at least once every 30-45 minutes. ( I know decafe still has some it it but it is better than regular tea/coffee)

I kept having the UTI type symptoms but kept thinking it really wasn't a UTI it just felt different. Finally, I figured out that it felt like the urethra was irritated and would spasm. so I went to Google and put in urethra spasm and got this web site. WOW, THis sounds exactly like me. plus the top no no foods are what I eat/drink tons of.

I have a Dr. appt next week, but my question after reading is.... I understand that a lot of the foods/drinks that I have over indulged these past few months have irritated the lining of my bladder causing pain and spasms. But, If I (and others I've read about) stick to the diet, why doesn't it heal up and get to where we can go back to eating/drinking in moderation the things that irritate the bladder??????

Rhonda

[ICNDonna]

Try thinking of it this way --- if you were allergic to tea or coffee and they either made you sneeze or get a rash, you would probably expect that you would have the allergies for the rest of your life. There are some foods and drinks that cause a reaction in my bladder and always will. I was diagnosed with IC in 1975 and even though I do very well most of the time, I know that if I drink a glass of iced tea, it will cause pain.

You might try some of the herbal teas --- there are lots of them available now. I do think following the diet, at least until you have a diagnosis, is a good idea for you.

Sending welcoming hugs,
Donna

[systitis]

Are you in menopause (or perimenopause)? Urinary symptoms often accompany meno. Do a search on here for "Estrace" cream. You will find much helpful info that might send you in a productive direction. Estrace cream has been a life saver for me & I found out about it here on the IC network...not from any of the four uros or my long-time (now fired) gyno.

This thread in particular is a gold mine of info for those of us in meno or perimeno. http://www.ic-network.com/forum/showthread.php?t=9305

The leaking might also be a symptom of pelvic floor dysfunction...a well-trained physical therapist can be very helpful in this case. You will also find a great deal of info on PFD here.

Good luck & please let us know how you are doing.

[HeatherP]

I agree with Donna. Switch to herbal tea with no sweeteners. I like peppermint. It's very refreshing. I'm drinking it right now! I drink 2 -3 cups of herbal tea a day.
--Heather

[eyeliner128]

It's very common to have vaginal symptoms with I.C. That's why I see a urogynecologist, instead of a gynecologist and a urologist separately.

I, unlike most people, do not believe that food upsets I.C. (with the exception of hot peppers and other extreme foods). I will say that beverages do, so I would drink nothing but water if I were you, especially in flares. But as far as food goes, I don't see a connection at all. That might be why you aren't geting relief from dieting.

I recommend the herb "Quercetin" to everyone I meet with any kind of urinary symptoms. So definitely try it, there aren't any side effects.

[jvr]

Hi,

Let me share my experience with the IC diet. Years ago, I thought diet had nothing to do with my IC. I noticed beverages irritated me, but I didn't really think anything else did. I've been feeling fairly good for the last number of years. I started treatment with a new doctor recently and he insisted on giving me a cystoscopy to help him decide which meds to start. I didn't think it would affect me as much as it did.:tsk: The pain from the procedure was building daily. I was starting to get really nervous and was afraid of continuing to go downhill. I changed my diet and everyday things are getting better. I think when my pain was more moderate to severe, it was hard for me to tell how much of a difference it made. This recent experience has proven to me that diet is more of a factor for me than I realized! Just my 2 cents.

Jill

[VickiB]

Hi Rhonda,

But, If I (and others I've read about) stick to the diet, why doesn't it heal up and get to where we can go back to eating/drinking in moderation the things that irritate the bladder??????
I'll throw my experience with this into the mix as well. To some extent, I have been able to go back to eating some items that irritate my bladder. (Which is probably not a smart thing to do in the over-all game plan!)

At first I was almost obsessive about sticking to the diet and I found my symptoms improved by a good 70%. I began to experiment more & more with what I can & can't eat and learned which items definitely cause me to flare. I've also learned that as long as I'm in a good place IC wise at the time, and don't combine it with other flare causing food or drink, I can now get away with eating small amounts of many of these trigger items. It's like playing with fire though and I don't dare do this too often. (I also don't recommend anyone else should do this) But I could never have done that before so I do think that through diet some degree of healing has occurred which now allows me to push the envelope somewhat.

Vicki

[HeatherP]

I have had this for 5 months (not officially diagnosed) and have still not figured out any specific food triggers. But I did notice when I was on a really strict diet (no sugar, wheat or animal products, and few fruits) I did start to feel better after a couple of weeks. Then I could eat anything and be OK, but maybe I overdid it because the last couple of weeks I have been in constant pain. So, I started today back on the very strict diet. We'll see how it goes...
Eyeliner128: how do you find a urogynocologist? I think that's a good idea, because in my experience urologists tend to be men who typically treat men, and don't know much about women's issues.
Also, do you think it's OK to drink herbal tea?
Thanks.

[ICNDonna]

Unfortunately, there aren't many urogynecologists around. I have been seeing a female urologist for the past two years (I had the same uro for over 30 years, but he retired). My current uro is moving out of this area at the end of next month so I'll need to make another change. I've pretty well decided which I will call --- and I hope he's okay too.

Donna

[Glenda2]

For anyone that suspects they might have IC , please get it checked out asap.

I was left to suffer 8 months before my doctor took me seriously enough to send me for test's.

I literally had to beg and plead and cry for test's.
KUB Ct Scan.
And finally the Cystoscopy.

My case is quite advanced.
If the doctor would have done this 8 months ago , I might not be so sick like I am right now.

Please get this taken care of immediatly.

And if it is confirmed as IC , begin treatment quickly.

I've been on the Elmiron 1 week as of today the 19th.
And the Darpaz , 4 and 1/2 days as of today.

You are in my thoughts and Prayers. I hope you will be on the road to recovery real soon. :pray: