New to This

[Kittylad]

Um, this'll probably take awhile to write. Heh. I've pretty much come upon the opinion that I don't get much helpful information unless I give an accurate picture of what exactly is going on so, I tend to give a lot of details.

I've had this problem for awhile. I don't really remember when it started but I can recall having what people around here describe as "flare ups" in my childhood. Especially during long car trips. I don't remember when I had my first UTI and I don't know if I'm more or less than average on that count. More now, I think, but you know how it is with that constant feeling. How can you tell? It usually manifests itself as my bladder sending a signal to my brain that I have to pee (even though I may have just come from the bathroom not 2 minutes ago). And there's all of 2 tbsp of pee to show for it. Frustrating, for sure.

I haven't yet been diagnosed and it's not for lack of trying. I'm not saying "It's definitely IC!" in fact, I hope it's not. But, you know, reading all this stuff is eerily familiar. I moved to Montreal a few months ago, and the urologist in the city I moved from has been in the process of referring me to someone here. The guy is a sweetheart (my previous uro) but he's um ... new? I'm just not going to say what I'm thinking because no one needs that negativity. Anyway! It's taking awhile.

A couple weeks ago, I had a very bad UTI. I'm usually pretty reluctant to go to a doctor. I'll get to that in a minute. I was bleeding out my urethra non-stop. Not like, oh every time I pee it comes out red, no ... even when I'm not peeing, it's leaking out. I had to sit in the bathtub in very red water until the Cipro finally kicked in and beat the nasties up. I was very scared. I had my wife run out to the drug store and buy me a package of Depends (never worn these before but I was desperate) in case I had to make a run to the hospital. I'd be lost without her. She sat beside me, refilling my glass of water and reading some, sci-fi novel to me while we sat in the bathroom. I told her to keep on reading unless I said stop, and she did, even when I was shuddering in pain. I just kept focusing on the story and eventually the pain became manageable again.

Hurray for antibiotics! Isn't technology wonderful folks? Sometimes I fantasize about a simpler time when we didn't live in big stinky cities. Then I flush my toilet, know that there's a pharmacy not 30 minutes walk away and I smile. Rustic life is not for everyone and I shudder to think of how a ride on horseback would feel with an IC flareup. Owwww!

Um, so doctors. I'm quite phobic of doctors. I will usually wait until there is an obvious (like bleeding or fever) sign of something being wrong until I go to a clinic or hospital. Doctors tend to get distracted by another condition I have. I am a trans-man. If you don't know what that means, I have to take my hormones in pill form (as I cannot make my own) and I have an unusual configuration of bits. A lot of doctors will flat out refuse to treat me even if it's for something unrelated, like a UTI. They want to muck about with my hormone dosages and I smile and tell them to check with my endocrinologist. It's taken five years to tweak the hormones to a prefect balance for my body (everyone's hormones are different as you well know!) and I'm not letting a random doctor in a clinic who has never seen me before muck about with them. I don't know why they have this bizarre urge to fix what's not broken. I think it's such an unusual condition that they get fixated on it and want to poke around.

So yes, hard for me to get proper medical care. I don't quite know what to try first in the meantime. It could be months before I even see my new uro and I'd like to do something for myself while I wait. I've never been one to sit on my hands while my health is at stake. I've had a look at the IC diet and ... hehehe, um ... everything I eat and drink on a regular basis is in the no-no category. Like the 7 evil foods you shouldn't have? Every one of them except multivitamins. Coffee gets me started in the morning. I drink tea when I'm stressed. I have diet cola with my dinner or juice if it's in the house. Milk chocolate is my favourite food. I eat citrus when I'm feeling lethargic to perk me up. What's left? Cake, steak, and veggies? Jeeze. If I went full-haul into this new diet, I would have to completely restock my kitchen at great expense.

So what I am doing, is limiting my consumption of problem foods and seeing what it does for me. I no longer take cranberry supplements because I have noticed that that gives me a definite flare-up within minutes. No cranberry juice either. So, I'm going to try and dramatically reduce my consumption of citrus and see what that does. If that's my only trigger I will be positively dancing (I doubt it but there's always hope.) I will get some citrus-scented oils for my oil diffuser and enjoy my wake-me-up citrus that way.

Also, I'm taking the time to rinse myself before sex, making sure there's absolutely nothing anywhere near that area that could rub and irritate. I'd really appreciate it if someone could advise me on products you use for labial dryness, clitoral pain/oversensitivity, numbing jels, anything of that nature that helps you because I have positively no clue. I promise not to take it as medical advice, I just need to somehow narrow down my research on potentially helpful products. I'm going to see about some anti-itch cream made by Vagisil. Possibly some lidocaine jel for bad days, if I can find it for a decent price.

I've heard of people mentioning the baking soda in water trick. What is this and how do you do it?

Thanks in advance for your advice.

Edit: Forgot to mention that I also suffer from an anxiety disorder. I was on Effexor for awhile and managed, with meditation, other coping strategies, and the supervision of my doctor to ween off of it. I have heard that some IC sufferers have had success with reducing their symptoms with a regular dose of Effexor. Much as I would not like to go back on an addictive substance (especially one that I can't have cold medication with!) I do acknowledge the possibility of having to try it again. If it works, fine. Due to my other condition, I will never be medication-free. Who is anymore? Such is life.

Also, I am on a prescription of one Enablex tablet per day to reduce the random bladder spasms. It really helps on long car trips. Anybody else on this medication? Is it called anything else?

[ICNDonna]

to the IC Network.

It sounds like you need a pep talk on the IC diet. Try thinking of it this way. You absolutely know that if you stick your hand on a hot burner on the stove it's going to hurt! And even if you just put it there for a tiny part of a second --- it's still going to blister and hurt!

There are some foods and drinks that cause pain in an IC bladder --- even a small amount can cause pain. I know it can be a challenge at first, but I suggest you give it a try for six to eight weeks --- before giving up on it. Reducing amounts of irritating foods/drinks won't keep them from causing pain any more than taking your hand off the stove quickly.

I hope you feel better quickly.


Donna

[Kittylad]

I thank you for your kind welcome and your words of wisdom. Something I would find really helpful at this stage in my exploration is information. I read the transcription of the talk about the IC diet study (gosh that was a run-on sentence.) It said the study was a survey of 125 women if I'm not mistaken. This is the only thing I can find so far on the subject that is not anecdotal information. I'm the sort of person that finds facts and knowledge comforting, especially on medical issues. It might seem like I'm displaying a negative attitude but, in reality, I have a need to know how things work in addition to what the claims are.

But the study of IC and PBS is so new. There's a dearth of those comforting facts that I'm seeking. A bit of self-research on my part is required. I know that highly concentrated citrus is not my friend (even though I love oranges, drat!). Good, there's one factor nailed down. I'd like to be a little scientific about my approach to this. I do not jump on bandwagons, especially if I have not had a diagnosis yet. Imagine replacing all the food in my house just to find out a month later that my bladder doesn't empty properly (as my previous urologist suspected) and can be corrected with surgery.

I'd like to try eliminating certain foods one at a time and seeing if that has an effect. If I find something that really changes my symptoms, I'm going to shift my attention to all foods in that category. Yes, I am going to consciously try to swap out some foods for others, some products for others, etc but ... you have to understand, completely swapping over all the food in my house is a huge thing. A lot of the brand name "organic" foods suggested I cannot afford. I must also consider my wife, because I am the one who runs the household. I stay at home and cook meals, clean, etc so what I eat, she eats. I only make one meal for both of us at mealtimes and our grocery list is very limited in ingredients. This is to save money.

Our apartment is expensive, so we've made sacrifices in other areas to maintain the nice things that we enjoy. Food? It's healthy enough, but pretty predictable. Take the "problem foods" out of the equation and we have: no chili, no curries, no stir fry, no breakfast sausages, no spaghetti and we have hmm, burgers without some of the toppings, pork chop in cream sauce, scrambled eggs and toast, steak. Those meals I can have are the more expensive ones that we only have once in awhile (except the scrambled eggs obviously). So, that's most of the meals taken out of our standard rotation for how many weeks did you say? 6 to 8? On the chance that it might help. Yes, I'm sure I can find other meals to make quickly and cheaply that fit in the bladder friendly category but not all at once! Beyond replacing all the ingredients in my house, I have to learn how to cook several new dishes quickly and efficiently. The meals also have to fulfill the high protein intake required for my wife and I to keep up with our strength training. Meats with preservatives are the most cost-effective means of getting sufficient protein to heal the microabraisions in the muscle fibre that are part of our workout regime.

I'd love to try the diet suggested for 6-8 weeks but I'm looking at a problem of logistics here. I need to find a way to do my experimentation that will not take a huge bite out of our finances and throw my household into disarray while I learn how to cook all these new dishes and find all these new brand named products.

I'm not throwing away that diet. No, no. I've bookmarked the thing. And as soon as my printer is up and running again, I'm going to print a copy to store in my kitchen. If I am diagnosed with IC, that's a different story. That's a professional telling me of a definite condition and that would be a legitimate reason to completely change my diet immediately. I'm not going to panic and self-diagnose but I can, and have, learned very valuable things from this site and forum so far. Even if my condition is something different, it's enough for me to be among people who also feel the same symptoms I do. It makes me feel much less crazy. It also makes me happy that some folks who are dealing with more severe pain than me are trucking along, surviving, and enjoying life.

[Jadia]

Hi kittylad

One alternate solution I can offer as a suggestion to you given the understandable hesitation to completely flip your diet (I was the same way!) is a food journal!

With a food journal all you need to do is:
- Each time you eat or drink, write down what you had and when. It doesn't have to be hugely detailed with measurements or anything just enough to help you remember. Something like:
~ Lunch: Ham sandwich with mayo, mustard, tomatos, vinegar and salt chips, and a Coke Zero
is completely reasonable. It takes all of a few seconds to write down each meal.

- Next, if you notice any irritation at all, write that down in your food journal.
~ 2:30pm cramping and urgency

If you use 1 page for one day you will end up with a simple to follow, running list of your days with IC and over time you will be able to start actually seeing a pattern in when you experienced symptoms.

For example; Perhaps after a week you look in your journal and notice that every time you ate those Vinegar and Salt chips with lunch you then had the cramping and urgency. But on the days you had Doritos, you were fine! For the next bit, try eating chips that are not vinegar and salt and see if your symptoms improve by tracking the journal.

Eventually you can use the journal to pinpoint your problem foods and instead of changing your whole diet suddenly, you can slowly tweak it until you find a nice balance. Like for me I can actually drink all the tea I want with no problems...but if you hand me a coke my bladder is going to revolt within 30 minutes of drinking it. I can eat fresh or cooked tomatoes with no issues...but a single sun dried tomato is TnT for my urethra!

This can take a few weeks of tracking as you do trial and error, but it really is a simple way to help you customize your diet a bit slower than just the one fail swoop change! I hope this is helpful to you!

[ICNDonna]

At the time I was diagnosed (1975) not much, if any, thought had been given to a diet connection so I did find my triggers by keeping track of what I ate and drank and compared it to pain levels --- it took months to find my triggers. When the food lists first came out, I thought it was outstanding --- and all of my irritatating foods and drinks are on the Caution list. Having the list would have saved me a lot of pain!

Donna

[Kittylad]

Thank you, Jaida. That sounds like a sensible thing to do. I'll go down to the dollar store today and pick up a book specifically for that. I like being organized.

[Jadia]

You are welcome. Your post sounded alot like my husband and I. We are very scientific minded about our approach to dealing with any medical issue and we don't jump into anything without a ton of research behind it both on our own and with multiple doctors. At this point my doctor even photocopy's articles for me about IC if he spots them in medical journals. Alot of terminology is over my head and I spend a good bit of time cross referencing terms to be able to understand them. In the end though, it makes us both feel more confident about my condition when we can walk into the office and feel like we have a well informed opinion on the topic and can discuss it well rather than flopping around like a fish out of water just hoping to land back in the tank.

What is that saying? Knowledge is power!

[Kittylad]

Yes! Knowledge is power It chases away the fear and I cherish it very much for that.

I just got home and I bought a little leather-bound journal to start my food diary. I'm going to try an experiment with coffee and the baking soda trick (not together! BLECH!). But to see if there's a difference between coffee mitigated by something and unmitigated.

I tried going without coffee today and um ... I fell back asleep until noon. Whatever happens, I need a way to ingest caffeine or citrus or SOMETHING or I do not function, period. I got so little work done today. Only a load of laundry. Everything I was supposed to do today gets pushed to tomorrow because of my little experiment. I won't be doing that again.

[Pammylynn8]

Hi there Kittylad! I hear you about the diet.. it stinks! A year ago I was eating whatever I wanted.. coffee, soda, spaghetti, etc. A few months ago I was diagnosed with severe food sensitivites to wheat, dairy, eggs, beef, lamb, mustard and a few more. Sooo I had to cut all of those out completely.
Now, I have to combine that with the IC diet which restricts my food even more. It is hard and a pain.. but it can be done. I only drink water now. After looking at the crap in soda, I don't ever want to drink it again. I really really stick to the IC diet and I feel a lot better. I wish it wasn't this way. I also have panic disorder and take Lexapro and Klonopin and it doesn't bother my bladder.
Do you think the hormones you take might be making things more sensitive. Are there any studies about that? I hope you find a GREAT dr. who is sensitive to your needs and I will treat you right

[Jadia]

I hope it works for you kittylad! If you have any questions about the journaling just ask

[earthlady]

You had asked about the baking soda shooters, as they are called here. People use anywhere from a half to a whole teaspoon of baking soda in 8oz's of water to drink. Some follow this with tums. Many of us have used this during a flare, but it's not advised if you have high blood pressure.

[Kittylad]

Wow Pammy, seems like you'd be able to eat hardly anything at all. I'm glad you're able to stick with it though. It's folks like yourself who are my heroes, and I don't mean that in a cheesy way. It's great to see people face big challenges and soldier through them. Makes life look a little less scary.

Do you think the hormones you take might be making things more sensitive.

Nope. I'm totally not going to ask anyone to study hormone replacement therapy (HRT) just for me, but if you're interested, just plug it into Google. There's more info there than you'd ever want to read. In short, though, no. No more than any other man's hormones do.

If HRT did make someone more sensitive to IC, what would they do about it? If I stop taking testosterone, I have no hormones. None. No gonads, no hormones. No estrogen, no progesterone, no testosterone. Nothing. I would live for about ten or twenty more years and then I would probably die, either by illness or suicide. No drama. Just giving you the straight-up facts about what happens.

Menopause is something that happens to a person gradually. Your hormones peter out and your body grows accustomed to living without them in the later stages of your life. If a doctor shut down all of your hormone production all at once, you would become seriously ill, no matter how normal your body. It's not something to do to a 26 year old man, or anyone else for that matter and any doctor who thinks that's alright should be stripped of their license. So, if a new study comes out someday that shows hormone supplements cause bladder sensitivity, I will just have to shrug and say "Well that sucks for me. What else is on TV?" Since my hormones are absorbed directly into the bloodstream from the stomach (as opposed to other supplements that have to go through the liver) I highly doubt they're doing anything unusual to me.

Thanks Jaida. I'll be sure to poke you for help if I need it. I've kept food journals before for weightloss. This looks more and less complex. I don't have to keep track of how much I ate but I do have to keep track of how I feel throughout the day.

Thank you Earthlady for getting back to me about that! I was wondering what everyone was talking about with the baking soda. I tried it today even though I was not really having a flare (I usually have a low level of annoyance throughout the day that I just have to ignore) just to see how it would feel. I managed to not bring it back up (tastes nasty!) and it could have been soothing. I'm not really sure. I will have to wait until I'm feeling really crappy in order to see if it makes a huge difference. It's a great thing to have in my back pocket though. I feel like I'm not totally unprepared. How long after (or before) I eat should I take this baking soda shooter?

[Pammylynn8]

Yes, I agree, no hormones would not be good! You would probably become severly depressed as well..
I think you should go all in with diet hehe!! Try for a few days and see how you feel!

[Kittylad]

Within the first two nice big posts by me are the reasons why I cannot do that, Pammy. The first post also contained the answer to the hormone question you asked. I'm being patient, honest.

I'm going to wait for the advice of a qualified dietician before making huge, disruptive changes to my life. Then, I am going to make the changes I can afford to make. This is a sane and rational thing to do.

If I had a dollar for every time I've read about a new fad diet that's supposed to make miraculous improvements in my life, I could hire my own private urologist and never bother waiting in a clinic again. The fact that a lot of people swear by it does not distinguish it from any other fad diet I've ever heard of. I'm skeptical. I will approach it sensibly.

[earthlady]

I don't think it makes any difference on whether it's taken on an empty stomach or a full one. I really never thought of it though. I just drank it whenever I needed to.