Questions, questions and more questions ....

[jolisey]

I have just recently been officially diagnosed with IC, but have been seeing a urologist for almost 3 yrs now. I have lots of questions about IC in general (is this the right place to ask them??)

First of all, I don't know if I fit into the "typical" IC pattern: I have a LOT of pain in my bladder and urethra (do you get pain in your urethra with IC??), but I don't often have much frequency or urgency (only when I'm "flaring", and even then, I get up maybe 6 or 8 times a night ... a far cry from the "50+ times" that some women are reporting). I seem to have a "flare" every 4-6 weeks, possibly having something to do with my menstrual cycle??

I was previously diagnosed with urethritis and trigonitis (which my new dr thinks is bunk), but I DID respond to antibiotics almost every time I tried them, even though there was no sign of bacteria in my urine any of those times. Is is common/uncommon for those with IC to respond to antibiotics? I've been struggling with this for long enough that I'm even beginning to doubt THIS diagnosis of IC ....

Lastly (for now!) what sorts of medicines do you all take? I've gone over some of the info here, but must admit it's a bit overwhelming: natural remedies, over the counter, prescription, oral meds, meds that must be "instilled", surgeries of all kinds, procedures ..... yikes! I'm not sure where to begin ......

I've started Elmiron a couple of days ago, and don't seem to be having any side effects except maybe a bit of a tummy upset occasionally (thank God), but I'm wondering if I should be trying antibiotics again, too, as this last "check up" set me into a flare. In my experience, every time I "wait it out", it gets progressively worse and worse, and I'm afraid to let it get to a point where I'm in so much pain, I can't think straight (I had this experience 2 summers ago ... it was awful and lasted over 2 months, only to be "stopped" by a different type of antibiotic .... I think :confused:

Enough rambling! If anyone has some insight into these vague and jumbled thoughts, please let me know! Thanks!

Wendy-Lee

[elitynski]

Dear WEndy - first, I'm sorry you are having to join the IC club. I know it's not something you had anticipipated but - here you are and there are a lot of loving, suppportive people here who can help. (also just so you know I am a guy).

I know the info can be overwhelming and I have been given one principle that does make a lot of sense and that is this....Start with the most conservative treatment first. In this case - the IC diet would be a perfect place.

In terms of all the related symptoms, suplements, medications, exercises...I agree...it's overwhelming because you find that people respond differently to different treatments, depending on their specific symptoms.

Work with a Dr. that you trust, listens, and is willing to work with you. I have had a hard time in this area and it frustrates me. Especially since I want to try some medications and getting it from a dr. can be challenging. Sometimes, I feel like this is a full-time job just trying to manage Dr. appointments, physical therapy appointments, counseling appointments.

Also - realize that there are a lot of people who have found a way to manage their IC and have moved on - they are never here because they are treating their condition successfully.

Finally - this is hard work, but diligence, perseverance, and the hard work will pay off. And you will have some of the greatest emotional support ever.

I wish you the best and I hope some of what I said was helpful.

[crkshnks79]

I have just recently been officially diagnosed with IC, but have been seeing a urologist for almost 3 yrs now. I have lots of questions about IC in general (is this the right place to ask them??)

First of all, I don't know if I fit into the "typical" IC pattern: I have a LOT of pain in my bladder and urethra (do you get pain in your urethra with IC??), but I don't often have much frequency or urgency (only when I'm "flaring", and even then, I get up maybe 6 or 8 times a night ... a far cry from the "50+ times" that some women are reporting). I seem to have a "flare" every 4-6 weeks, possibly having something to do with my menstrual cycle??

I was previously diagnosed with urethritis and trigonitis (which my new dr thinks is bunk), but I DID respond to antibiotics almost every time I tried them, even though there was no sign of bacteria in my urine any of those times. Is is common/uncommon for those with IC to respond to antibiotics? I've been struggling with this for long enough that I'm even beginning to doubt THIS diagnosis of IC ....

Lastly (for now!) what sorts of medicines do you all take? I've gone over some of the info here, but must admit it's a bit overwhelming: natural remedies, over the counter, prescription, oral meds, meds that must be "instilled", surgeries of all kinds, procedures ..... yikes! I'm not sure where to begin ......

I've started Elmiron a couple of days ago, and don't seem to be having any side effects except maybe a bit of a tummy upset occasionally (thank God), but I'm wondering if I should be trying antibiotics again, too, as this last "check up" set me into a flare. In my experience, every time I "wait it out", it gets progressively worse and worse, and I'm afraid to let it get to a point where I'm in so much pain, I can't think straight (I had this experience 2 summers ago ... it was awful and lasted over 2 months, only to be "stopped" by a different type of antibiotic .... I think :confused:

Enough rambling! If anyone has some insight into these vague and jumbled thoughts, please let me know! Thanks!

Wendy-Lee

Hi Wendy ! :welcome: Yes there is a "typical "pattern to IC , but you can throw it out the window , because almost no 2 people w this disease are alike . I do get pain in my uretha , mostly when Im flaring tho but I have regular pelvic / bladder pain everyday and 6 to 8 times a night is considered alot , 50 + is extremely severe !! Im in the bathroom about as much as you per night , even tho my frequency during the day is mild , unless of course Im in a flare . Hormones def can affect IC , at least half of the women I have talked to have said the same as you w their cycles . My period has been stopped through birth control not just because of the IC but other issues w my period as well . Although I just got over my period , so the BC doesnt always stop it . But I noticed that all my symptoms got worse before and for the first 2 days of my period , then everything calmed down ... even my pain :smile tee
Honestly dont know why the antibiotics help , but your not the first person Ive read that from either . I know when this all started and I didnt have the chronic pelvic pain yet , just the frequency and burning , antibiotics helped me too . But since I got my diagnosis , I havent benn on antibiotics to see if they still help now ???
As for meds I was prescribed elmiron and elavil , altho I havent started the elmiron yet because its way expensive . The elavil helps w my chronic pain , its an antidepressant that is used for the pain , how it works Im not sure ? But you can ask your doc if your interested . Those are the 2 standard drugs that IC'ers are started on . I also get the bladder instills you referenced to . Ive only had 2 , and havent seen much of a difference yet . They consist of ( some have different ingredients , but these are mine ) lidocaine , to numb the bladder , heparin , to help with the bleeding ( I think ? I always have blood in my urine my docs suspect its from the pin point bleeding from the IC ) and a steroid to help w the inflammation . Considering Im new to the instills , Im sure if you wanted , more people could explain this more thoroughly .
Ive heard that if you take the elmiron out of the capsule and mix it w water in order to take it that it helps w the stomach upset , also taking it w food . Diet also can help , alot of things that you eat or drink ( even meds you take ie: vitamins , motrin etc ) can irritate your bladder and cause flares . There is a IC friendly diet listed on this site that can help figure out whats safe . Most people do process of elimination w this . You can cut out everything that isnt on the safe list then gradually add things back and see what makes you flare . Its a pain , but it helps immensely !!!
Im sorry that your going through all this and it is very confusing at first !! But this place is amazing when it comes to info and very caring people who are willing to help w advice and comfort :grouphug: I hoped some of what I wrote helped you ! If you have any more questions , feel free to private message me any time you want . Take care :)

PS Elmiron takes awhile for it to work to its full potential , some people can see a difference in a few weeks some maybe not for months . Its one of those meds that works better the more it builds in your system .

[ICNDonna]

I do understand how confusing IC can be. If you are making six bathroom trips at night, that is a lot!

I'll try to answer some of your questions. Antibiotics can help with discomfort because they have anti-inflammatory qualities --- that's why you feel better while recovering from an infection. They can still make you feel better even if you don't have any infection, but most medical professionals will agree that long term antibiotic use can cause some significant problems.

Elmiron can take six months or longer to become effective, but there are some who are helped so much that they no longer feel any discomfort and some are even able to go back to eating some of our problem foods. Some people find that if they empty the elmiron capsule into a small amount of water and take it that way (discard the empty capsule) it causes less indigestion.

There are some remedies that some feel are helping them and I think that's okay --- just be sure your doctor knows exactly what you're taking so you'll be sure you aren't taking something that conflicts with a prescription medication.

Antidepressants can help with pain because they interfere with the pain receptors in the nerve system.

It's not unusual to have pain/discomfort in the bladder and urethra with IC, especially if we eat or drink something on the problem list.

Sending healing thoughts your way,
Donna

[Wolfe]

Wendy-Lee, you're getting some good advice here. I know when I first found these boards, I would read for hours then spend a few days trying things, then come back and visit again. It's easy to get overwhelmed, but you'll make slow steady progress.

The Elmiron only took a few weeks to start working for me, and it has been a godsend for me. I hope it works that well for you. I hope you start getting some rest at night!

My uro suggested I take the Elmiron with a snack when it was bothering my stomach, and that worked for me. Even a few soda crackers work with it. I guess I have toughened up over the years because I can take it on an empty stomach again now.

Wishing you Wellness!

[jolisey]

What a wealth of good information and advice! Thank-you all so much!

So I guess I DO fit into the "typical IC profile" (I guess that's a good thing!?); having been misdiagnosed a couple of times, I've become skeptical! The doctor I'm seeing now (who diagnosed the IC) seems really good, and he specializes in this area - has even done some research here in Canada, but I was thinking, "Gee ... I hope that because he specializes in this area, he doesn't "see" IC in every bladder that he looks at"!! OK ... I feel confident now that he got it right!:lmao:

I did NOT realize that 6-8 times to the bathroom was "a lot" ... no wonder I'm always tired! :wink: I WILL try emptying the Elmiron capsule into water ... thanks for the tip. But my bottle says to "take on an empty stomach" ... wouldn't taking it with food interfere with it's absorption?

So, if antibiotics just help with the inflammation, which makes sense, what are my alternatives? What are some things that help with the inflammation that are NOT antibiotics???

Thanks again for all the help with my silly questions: I'll be setting aside some time again today to do some more "reading" here!

Blessings,

Wendy-Lee

[Claredale]

Welcome to the boards. It is great that you are doing alot of reading. We all have our little tips that we use. Sometimes they work for me, sometimes they don't. I have kept a journal on everything I have tried through the years and what my personal experience was.

What my doctor gave me at night because I was one of those 50 plus times a day people. Nights were every 15 to 20 minutes especially when I first layed down for the night. That is when my bladder seemed to be the most active because I was finally relaxing, so I was more aware of my bladder so any little urge, had me up hoping that getting that little bit out would allow me to sleep longer. My doctor prescribed Valium and Elavil to start me out. I also kept myself hydrated so that my urine was diluted so hopefully it wouldn't irritate my bladder as much. That didn't always work especially during flares.

The diet plays a big role in my managing my symptoms. Definitely no citrus products. I also learned that my hormones and stress played a big part of my flares as well. So going on continuous birth control and minimizing my stress has been a big help. It's also sooo important to have a doctor that you can trust and that listens to you.

Hugs, T83