Desparately wanting some answers about IC

[rakoswing82]

Hi, I'm new to IC. I was just recently diagnosed by my OB-GYN in December. I am 24 years old and recently married (5 months ago) to the man of my dreams. :) I'm a fifth grade teacher and I live in Illinois by the St. Louis area. :welcome: I honestly think I may have been misdiagnosed with IC and I was wanting some other opinions on it. See, I was a virgin before my husband and I married, and I noticed that right after we got married, I started having symptoms of what I thought was a bladder infection...painful urination, pressure, etc. But then I started thinking maybe it was just because I wasn't used to sex...makes sense huh? I never had any of this before I got married. So the pains continued...always after sex, never after eating...had several bladder infection tests done, only 2 came out positive. Then they said they wanted to test me for IC. I had all these different liquid substances put up me and they asked me to rate how the pain was, which I really didn't feel any, just pressure and a very very mild burning when I peed it out...but even that constituted the doctor to say I had IC and I had to go on this special diet. Well, my husband and I are already doing the Curves diet and have for several months, so now it's a diet upon a diet.:loco: I didn't follow it that well in December and I noticed I was having stomach pains but no pain when I went to the bathroom...except ONE time for five minutes, right after my husband and I had sex and we used spermicidal condoms that time too which I thought may contribute to the burning. So I figured hey, I was eating whatever, and I never had pains urinating except after sex, so I must not have IC, it must just be I'm not used to sex yet...is anyone agreeing with this? Anyway, I decided I'd try the diet just to be sure about my theory. I'm starting off with a clean slate, eliminating all trigger foods and introducing them in every three days...the diet seems really harsh though. No preservatives, no chocolate, no drinks besides water and milk, no fruit besides blueberries and pears (are mangos okay), no cheese besides mozzarella, no yogurt, no eggs (can I cook with eggs?), no vinegar (can I cook with vinegar?), no soybeans (is soybean oil okay?), no citric acid, msgs, yada yada. I've found though that I don't know how I'll introduce certain foods back in their pure forms to see if that's what's bothering me (like citric acid, there's lots of stuff with citric acid, but pure citric acid? Because if I say I'll test citric acid and eat a piece of cheese, it doens't work because that cheese also has artificial color in it which may cause a flare-up and then I wouldn't know if I'm reacting to the citric acid or the artificial color.) So I'm trying to find foods that just have one trigger ingredient in it to try that. My question is also, what's a flare-up? For me, the only real pain I've had is the occasional pain peeing after sex...sometimes I get stomach aches but how am I supposed to know if the stomach aches are from the IC, or stress, or worrying, or sickness, or what? I easily worry...anyway, any comments would help!

[kadi]

Hi there,
What really worked well for me in identifying trigger foods is taking the IC diet with 3 columns (usually ok/ sometimes ok/ usually problematic) and eating only out of the usually ok column for 3 weeks, which lessened my symptoms considerably. Then adding in one food at a time from the middle column every few days & if my symptoms did not go up, I could add that food to my "safe" list. To get to that diet, click the link at the top of this page that says, "Patient Handbook"* and then click the "Diet and IC" link.

There really is no need to start out by testing things that will hurt you. It's probably best to find what you CAN eat and start your body's healing process. Along the way, you will find what bothers you and can then rule those foods out.

I do recommend becoming a label reader and avoiding foods with things like citric & ascorbic acids, colorants, etc. for awhile.

A book that has a really good method for figuring out trigger foods, making the most nutritious choices from the IC diet, creating meal plans is Julie Beyer's book, "Confident Choices", available in the ICN store. Click the link at the top of this page for the ICN store.

*The Patient Handbook also has a section on intimacy and IC with helpful suggestions for couples.

Wishing you a warm welcome, and hoping you are feeling better soon!

[kadi]

PS. I am a high school teacher now, but taught 5th & 6th grades for 11 years:) I've had IC for 3-1/2 years. I wrote an article on "Teaching & IC", which is in the Summer 2006 IC Optimist Newsletter, with tips on managing IC & the classroom/school environment. Feel free to PM me with questions anytime!

[scriv]

Hmm, I do wonder if it is sex which has irritated the urethra and bladder. It is after all a new trauma to that area. And maybe the condoms or the spermicide/lubricant could be making matters worse? Any chance of your doctor prescribing a soothing cream for the vaginal area>

[ihurttoo]

Gosh, it is hard to say! I can see why you'd be confused. I was also a virgin when I married, and had the same problems. That was really the very beginning of mine too. My symptoms were quite mild then, and mainly after sex. But, 2 yrs later, I got pregnant and that was REALLY when things got worse for me. I had a bad pregnancy (had toxemia), and a C-sect and things got bad after that and then endometriosis made it;s mark (literally grew thru my bladder!).

But, my very 1st health problems came with sex. So I find your story very interesting! I dont know the answers to alot of your questions (I can eat and drink most things except caffine, carbonation, spicy and citris foods.) But, I am not really typical there. So, I cant help alot on the diet thing. But, I do remember a post here a while back saying that there was an article that says semen contains citric acid! So, if you dont use condoms, that would bother you. Then, the actual condoms bother alot of ICers too. So, you might try experimenting with different ones to see if different brands/kinds might help.

I would DEFINATELY avoid any kinds of spermicide. Almost everyone here is sensitive to chemicals "down there".

Another thought is that you might have something called Vulvdynia. It causes pain and burning down there after sex too. Some ladies with it hurt down there all the time, and for some, (like me), it mainly happens after sex. Plus, sex itself can hurt sometimes with it. You kind of feel like you have a bad razor burn down there and are REALLY sensitive. There is a board on this website about it, you might snoop around there and read some posts and see if anything there sounds familar.

Hope that your trouble goes away soon, and it really is just an adjustment thing! I just dont know, but I hope it goes away for you!

Hugs,
Amy

[Fluffy2]

Some people don't have as many food triggers as others so I would definitely listen to your body with regard to that. I personally have only noticed certain foods like coffee, tea, hot chocolate, lots of tomatoes etc. really bother me. But I can eat most other things in moderation and maybe you can too. If sex is your main discomfort you really will have to get creative sometimes and also make sure you talk to your urologist about prophylactic antibiotics after sex as a possible measure.

I just will not have intercourse if I am irritated. Period. For you as a newlywed I would imagine this is something you would be unlikely to consider. But sex is much more than just intercourse and for me after 13 years of marriage it is comfortable to do other things other than intercourse when I am not feeling 100% down there. My husband benefits from lots of variety really. Lubricant becomes your best friend so find one that really agrees with you for sure.

Good Luck!!

[kerra]

It is very interesting what you guys are saying, i too was a virgin before i got married. I really do feel like my symptoms started after i started having sex. Then about 6 months after i got married, we got pregnant and i had a misscarriage and that is when everything just got drastically worse. the night before my misscarriage, thats when i started having pain with sex and it hasn't stopped since. so, i find it very interesting you both are in the same situation kinda. i just thought i would add my thoughts :smile tee
kerra

[rakoswing82]

YEah I'm not sure...it just seems like it may just be me getting used to sex.

[rakoswing82]

It's not really the sex that's uncomfortable...and I never know if I'm irritated until AFTER sex, when it burns when I pee...and even that is only every few months. And yeah, it would be hard as newlyweds! :) Thanks for the post!

[rakoswing82]

Thanks for the advice, I didn't know semen had citric acid in it!

[rakoswing82]

I also wonder this...I've had constant vaginal itching for about 2 years now, doctors ran tons of test, have no clue what it is except I have a lot of yeast, yet I never know when I have a yeast infection because apparently I don't have the symptoms most people have with a yeast infection (no weird discharge or smell or anything.) Anyway, the day of my IC test, I know I was still itching a lot and irritated, so I wonder if the burning I felt wasn't from the IC test, but just from peeing and that getting onto the irritated area? I seriously wonder sometimes if my OB/GYN listens to me, because I told her that that day...and I told her constant times that it's never after eating a particular food, but only occasionally right after sex that it burns sometimes to pee.

And what is a flare-up? Is it a stomach ache (cause that could also be stress, worrying, etc), or burning when peeing? How do you tell a difference?

[rakoswing82]

Tried a million, none really help...I've dealt with the vaginal itching for years now.

[rakoswing82]

THanks, I find the correlation between the two fascinating!

[rakoswing82]

THanks for the post! I don't know what foods, if any, hurt me, so I'm just going to start slowly introducing them back into my diet one by one based on the Elmiron handout my OB GYN gave me. I really doubt it's the foods that's doing it, and I even doubt that I have IC.

Does anyone think I should go to another OB/GYN for a second opinion, or is a urologist better?

[bcarroll]

i have been newly dx with ic. i have severe pain when i have sex, i do not have pain when i pee. i do use the restroom several times a day. it hurts in my pelvic all the time as if my pelvic bone is breaking. did they do the potassium test, where they instill potassium into your bladder? if so did it hurt, that is the only official findings of me having ic. i do not have the hunner ulcers they talk about. i have had in the past bleeding ulcers in my stomach and the dr. said he is not sure if that is the reason for ic. he does research and he said he has found that most all of his pt. have had ulcers in there stomach that get ic. i would go to a urologist and have them test you before dx. good luck to you and let me know how it goes.

[Fluffy2]

I wouldn't be too quick to assume that you don't have IC. Much of my frustration with this disease is that there still remains much mystery surrounding it. There are conflicting opinions on what actually causes our symptoms and this may explain why different physicians have different opinions too. It's not as clear cut as other conditions for sure and it seems to manifest itself differently in all of us. I have read many posts that are really similar to my condition but none exact to mine.

Take heart that you may have a very manageable & mild version of IC that you can control. If indeed you do find that IC is the final diagnosis (usually by ruling out other pathology) you might find that you over time you will become much more savvy with keeping symptom free as you learn what your triggers are.

take care!!:)

[rakoswing82]

I don't know if I had the potassium test or not. I've heard of Hunner's Ulcers, but don't know what they are and my OB never mentioned testing me for those. I wouldn't be surprised if I did have an ulcer, I worry so much!