Not 100% Diagnosed?

[Ward14]

Hi,

I'm fairly new to this board, mostly reading other posts. Well, I finally had my first Cystoscopy yesterday. The doctor told me that it wasn't a 100% that I had IC (whatever that means). He said that he did see the glucerations and that my bladder only held 600cc (which he said is kinda on the small side). I don't have many symptoms and have had pelvic pain for one year now with no for sure diagnoses. My only symptoms are Pain with Intercourse and buring right after when I go pee, I get up to pee at least like once a night, and I feel like a have an urgency (like I need to go right now b/c I can't hold it any longer). The doctor prescribed me Elavil and Elmiron to start treating the IC if its there and hopefully it gives me some relief. Also, I do feel good for the most part since I just had my surgery yesterday and it went much better than I had expected. If anyone has any suggestions or advice, I would greatly appreciate it.

Thanks,
Tiff

[icjen]

:hi: & :welcome: I'm so glad that at least your Doctor put you on some meds to help you. I just want to let you know you are not alone, and I hope you get some relief very soon!
Jen

[tigger_gal]

hi there tiff,
you can look in the icn hand book and read also the ic diet may hellp you.
I am glad you foun us. Welcome to the boards.

[ICNDonna]

The best suggestion I can think of for you is the read the Patient Handbook at http://www.ic-network.com/handbook --- there's information there about the IC diet and I encourage you to give that a try. Many people with IC find that single step offers a great deal of relief.

Sending warm healing thoughts,
Donna

[Sarojini]

I was just going to suggest checking out the Handbook -- it's an excellent source of information about all things IC-related. :)

I hope your meds help you feel better soon! You may also find that your cysto/hydro relieves your symptoms as well -- that procedure helps about 50% of patients feel better as well :)

Good luck and welcome :welcome: to the ICN

[Ward14]

Thanks to all of you that replied to my post. I will be doing more research on this as time goes by and hopefully I get some good things from the IC Handbook. I also really hope that this has been whats causing my pain since I'm pretty much at a dead end road with all the tests and surgeries. I will keep you all posted on how things come along.

Thanks Again,
Tiff

[traceann]

Hi Tiff and :welcome: to the gang!! Yep, the Handbook is a HUGE help - explaining treatments, some self-helps, diet info etc. Here's a link right to the IC Diet foods list, it was a great help to me, so I saved the link as I could never for some reason find it twice, :biglaugh:

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

The Elmiron can take 3-6 months to feel some improvement and 6-12 to feel the full benefits, so don't get discouraged with it...it just takes some time. But there are lots of things you can do in while waiting for it, and glad to hear you are on the Elavil as well, many have great luck with it!!

Here's a few things I learned here, when I first came here:

Heating pad/Thermacare Heat Patches: I now have a heating pad with an auto shut-off so if I do fall asleep with it one, I am safe. The heat patches are wonderful for when your heating pad isn't feasible - like for travel or sleeping. Heat was my number one friend for my bladder!!!!

Cold pack/frozen water bottle: For the vulvar pain and for my urethral spasms cold worked the best. Depending on what was going on all urethral or all clitoral/vulvar etc, I would use either one. The frozen water bottle is fantastic for putting between your legs, it fits perfectly. (I discovered this trick on a horrible car trip, that the water my hubby bought me, when I held it between my legs my urethra calmed right down!) I would even half sit on it -- straddling it. It helped sooo much!!

Prelief tablets: These are tablets you can buy in your drugstore or online that help to reduce the acid in foods. You take them right before you eat. They have helped me to expand my diet and tolerate some things I wouldn't normally be able to tolerate. I get them at my local Rite Aid, I spend anywhere between 8-10 dollars on them, and that's for a bottle of 120. It's just basically a calcium supplement, but it's wonderful.

Baking Soda/Tums: If I had eaten something that did not like me, I would drink 1/2 -1 tsp of baking soda in a big glass of water. Tastes yucky but helps neutralize things, even used to help with my urethral spasms. But be careful with it if you have salt-sensitive health issues... Also eating a couple of Tums can help as well. I usually use that trick for travel than the baking soda in water.

Uristat/AZO Standard: These two are over-the-counter Pyridium. Basically an analgesic for your bladder/urethra. It numbs things up quite nicely, and they had helped me immensely with urgency and frequency problems! But, they are for short-term use only, it's not a regular every day thing. I think the directions say not to use more than 2 days in a row. I talked to my doctor and got the go ahead to dose more than it stated, but you do have to talk to your doc if you want to use it more often. Apparently from what I have read and understand, is, it can build up in your kidneys and cause problems. And it also makes your urine orange, so make sure you have plenty of panty liners, because any little drip and you have stains!! LOL

Voiding/Pain Diary: This was a HUGE tool for me. I recorded everything in a little spiral-bound notebook. Every time I peed - approximately how much I went and rated any discomfort/pain on the pain scale I found on the site. I logged in what day I was in my cycle as hormones can affect your bladder -- I found I always have some troubles around ovulation and right before my period. So, it was nice to be able to flip through when I couldn't figure out why my bladder might be acting up and see that it was most likely the normal hormonal kind of thing going on. I noted when my husband and I had sex, etc. Everything -- I logged everything. It was a great tool to have to turn to, and a great gauge of my progress. I would have never realized I was voiding 30+ times a day, and 3 times at least at night. With my diary I could see the numbers start to fall.... And those I would have not recognized either, since it was usually a decrease of one or two times a day, so it was a great inspiration that something was finally working! Now, I am at maybe up to 10 times a day, and mostly because I constantly am drinking something, usually water water and more water, lol.

These are a few things I have learned, just from this great site. I remember I decreased my own discomfort in the first month or so of hanging around here! And the more I learned what worked and that I could control it, the more confidence I had in myself and my coping skills when it came to IC!!

Hugs!!

[m123]

Hey ward! I haven't been diagnosed with IC either but I am fairly positive it is. It's very mild for me. Try the IC diets others have mentioned here. If that doesn't seem to affect it, try bladder training. Your bladder seems to be able to hold alot more then a typical IC sufferer. Just try to put as much time as you can between using the bathroom, and drink more liquids even if your response is to avoid them (water if diet affects you) so that your bladder stretches out. That has done WONDERS for my frequency and urgency. In a few days I went from going every 30 min to going every 5 hours which is normal.

[SusieQ045]

well first of all welcome to the boards i am also new and it has been a great help to me. you learn alot of valuable information that you wouldnt get from doctors etc..because its from other peoples first hand experience. its been very helpful to me. i know how frustrating it can be to have he pain and not know where it is coming from. but im glad your doctor put you on meds. for some people they do a great deal of good. good luck and welcome

[DanaF]

M123 - Do you still feel a mild need to pee within those 5 hrs. That's unbelievable if you don't? I always feel the mild urge but can wait SOMETIMES up to 5 hrs - rare though. At night before I go to bed I feel like I get up every 15 minutes and nothing comes out...ugh.

[DanaF]

Ward14- I agree that the bladder training helps for frequency (not as much urgency though) I think those medicines should help you. I heard they're both the best you can take. I'm on so many medicines for depression though that I am scared to take more - so I'm basically not on any for IC. I am going to do DMSO in late Jan. I recommend it since you just got diagnosed. It helped me A LOT when I got diagnosed 15 years ago and was at my worst. I was pretty good for 15 years (only had frequency (went every hour or two - but not the annoying urgency all the time) Now it came back but I am determined to beat it with DMSO. Diet doesn't seem to help me that much, but then again, I'm not great at following it. You should prob try. The diet on this site seems to be pretty good in that they give you a lot of foods you could eat (not just those to eliminate). If you like spicy food and alcohol it is tough - although they say vodka, gin and rum may be OK. I just don't know what you drink it with?

[m123]

M123 - Do you still feel a mild need to pee within those 5 hrs. That's unbelievable if you don't? I always feel the mild urge but can wait SOMETIMES up to 5 hrs - rare though. At night before I go to bed I feel like I get up every 15 minutes and nothing comes out...ugh.

Oh definetly. Sometimes after 2 hours, sometimes after 3-4 hours I get the feeling that I have to go, but if I can hold it in I do. For me though laying down seems to make the urge go away for the most part, so to extend it an extra hour I just lay down for a bit.

[Ward14]

You all seem so helpful and comforting with this stuff. I guess I'm just starting to feel a little relieved at this point, since I have had pain for one year and I think I finally have found my reason why. This may be TMI-but me and my husband had intercourse for the first time tonight since my Cystoscopy and there was hardly any pain and no burning right afterwards :woohoo: . So I will continue to take the medicine and try to follow the diet the best I can b/c it seems like it rules out a lot of things that I really do love. I have tried to cut back on sodas and if I do drink them, then I drink diet. Since my surgery on Tues., I've just been drinking water and some sprite and hoping I don't get a UTI. Also, what is DMSO? I noticed that someone here recommended that I try that too.

Thanks Again,
Tiff

[Cheries]

Watch out for sodas. I think they made me a lot worse. Especially the diet ones!! Also, be careful not to take over the counter cold meds or decongestants.

[Ward14]

What is the reason for not taking over the counter cold meds or decongestants? Or do you mean not taking them with other kinds of medicines?

[rosesitty]

Over the counter cold meds - sudafed, day or nyquil, even pain meds like aleve and tylenol, or anything with a decongestant can cause a super duper flare. After taking these meds for a sinus infection, I'm just finally coming to the end (keep your fingers crossed) flare that has lingered for 5 weeks. I keep wondering what in the heck I'm going to do if I get a winter cold or flu. I see suffering in my future... :-)
Rose

[DanaF]

DMSO is a few different drugs they instill in your bladder for about 20 minutes. It is hard on your bladder at first, but in the end (after the 6 week treatment - 1 treatment a week) I think it's worth it. It sort of heals the inflammation and settles down any spasms you may have in there (by the way you wouldn't feel the spasms if you had them normally - but they could be there). Anyway, this sucks, but it sounds like your frequency problem is not bad at all - you're saying you don't have to go at all even mildly within those 5 hours?

[ICNDonna]

If you're still drinking sodas, please stop!!!! I can't emphasize that strongly enough. And diet sodas are worse than the regular ones because many ICers are sensitive to the nutrasweet that's used in nearly all of the diet drinks.

The best suggestion I can think of is for you to read the information in the Patient Handbook, especially the diet section, and put yourself on an IC diet. Nearly everyone with IC has at least some food triggers. The most common are sodas, coffee, many fruits, citrus, tomatoes. If all you do is to avoid those, please begin today.

Sending healing thoughts,
Donna

[Ward14]

What are the types of symptoms for a flare up? I'm not sure that I have had one of those yet. I think I noticed with certain drinks, I tend to need to go to the bathroom more often.

Tiff