Needing to vent..

[Dees1977]

I was diagnosed with possible IC after hydro/cysto.. I am on 50 mg of Elavil at night which helps me sleep.. I average in a 24 hour period 8 - 10 voids..What I am terrified of is getting worse. I have read so many stories on here of women who are on disability...urinate 60 times a day..have there bladder removed..How do I know that wont happen to me. I am a worry wart...of course..and I have let this disease consume me. I am 28 yrs old engaged with no children.. I want kids..but now I am afraid to get pregnant. I pray every night for all of us to get better..or for them to find a cure. I know that it could be so much worse for me..but I have never had a chronic illness. So far I have cut all beverages out except for water..I think that is helping.. I have yet to have sex since the hydro.. I am terrified it will cause a horrible flare. I never new before that sex could.. I just needed to vent to people who know what I am going thro.. Thanks for listening..sorry to ramble on.

Dee

[Shelka]

Hi Dee,

I'm so sorry to hear you're so distraught. I completely understand all your feelings & worries though. I've been through them all at one point or another! I was married last year and now I've been in a 3 month flare and my husband and I wanted to start trying for kids but at this point I can't even consider that. So yes, it can really suck.

HOWEVER, with that being said, I *really* think it's important that you try and avoid reading these worst-case scenarios especially when you're feeling so anxious & distraught. Of course it's important to be informed but I'm afraid that too much time spent reading these things is neither helpful (nor hopeful)! Although no one can say for sure what will happen in the future, try and keep in mind that most dr's seem to agree that IC is not ususally progressive so it's not likely to get much worse for you than it is now & with treatments you may very well do much better!

The reason I'm so emphatic about this is because last year during one of my worst flares I ended up spending so much time reading worst-case scenarios that I became very scared, anxious & even more depressed about my situation -- and I can't say it helped at all. At the time all I wanted to do was read more & more but in hindsight the best thing would have been to distract myself as much as possible and TRY (not easy!!) to focus on anything BUT the IC.

Also, I do research in a related area and it's clear to me that you have to be very careful about chat rooms & message boards. They are created with the very best intentions of helping people and they can work wonderfully, but at certain times they can also cause a lot of anxiety for people. Keep in mind too that many IC patients have mild symptoms and so they are usually working & out and about. Often what you find on these types of boards are people who have more serious & disruptive cases of IC. That doesn't mean that will be you!

I really do understand how you feel -- it's hard to just not know what the future holds in store but I think you'd feel better if you tried to limit how much time you spend reading all the stories because, as you said, it can easily just consume you.

I really hope this advice helps in some way! Message me whenever you want.
Shelley

[K9wife]

Well said, Shelka! I agree with getting too obsessed with the worst case scenarios, and above all focusing on the positives makes everything seem better. I know when you're in the midst of a flare, you just want to know that you are not alone....we all do that. Just remember that not everyone is in a flare all the time, and a lot of the posts here reveal that too...but when we're hurting we go to the "Pain " categories!!!! No doubt about it...IC is a frustrating and complicated disease, so just remember: do NOT let it win! Stay positive!!!!

[Dees1977]

Thanks you guys!!!!!!!!!!!!!

[patricia1]

Dees I am also sorry you are so upset right now. Remember IC is a disease that is different for everyone. Thats one reason its so hard to diagnose. Some may have pain only and other have urgency & freq. And some have all. While its important to understand your disease I agree about the worst case seniro. If caught early enough and treatment started soon usually your IC will not worsen from where it is now. Sometimes by the time a patient gets their diagnose they have sometimes gone years w/o treatments and their IC case is consider severe. I am one of those, on disability and so forth, but I spent 5 yrs w/o treatments and going from dr to dr. I was told this was one reason mine was so bad. But I still try to have a very postive outlook about IC. I know one day there will be a cure for all of us. And I have come to learn that I rule my life and run my life not my disease. This was hard to obtain at first but I feel better about my life now then when I first found out what I had.

Also remember there are people who go into remission and not have problems for years. This is one reason they leave the boards then come back if their IC starts to bother them again. I feel following the diet, taking your meds or treatments like you should that your IC most likely will not worsen. But remember I am not a MD only another sister with IC. Please try not to worry which is harder done than said....

[emilyrose197377]

I am sorry what you are going through . I can't say I identify what you are going through I never had the urgency and frequency aspect of Ic. I just have the pelvic pain and burning pain in my bladder and urethera. My ic is secondary to urinary retention. I do sympathaize with your fear.

Take care
Kim

[diane57]

Dees, I totally understand your fear and worry. When I was being diagnosed, my uro, who has a lot of IC patients, asked me what symptom bothered me the very most, and I told him "the fear about the future", and he said, "Boy, if I had a nickel for every time I"ve heard that..." He also told me that for most IC patients IC is not progressive (although we can go into flares that will make us think we're progressing, but when the flare is over we go back to our baseline.) When Dr. Parsons (who helped develop Elmiron) was interviewed by the ICN, he said that only about 1 in 500 patients progress from the moderate stage to the severe stage of IC.

It can be very disheartening to read the boards; some people here do have IC that has progressed, and some have much worse symptoms than others. I have a mild-ish case of IC, but still enough symptoms to be worrisome and uncomfortable and frustrating. When I first came to the ICN, there happened to be a lot of posts from people who were very ill, or having bad flares, or completely disabled, and I freaked out and worried and cried and thought I was looking at my future. Then a few weeks later I came back, and that day there were a lot of posts from people doing very well, the "I'm In Remission" and "Success Stories" boards were lit up like a Christmas tree, and I remember thinking Hey wait a minute, doesn't anyone have any discomfort, I can't relate to all these happy healthy people today!! LOL. Keep the boards in perspective, and be assured there is a very good chance that your symptoms will only get better over time.

[poetgirl]

Hi Dee,

I understand how you are feeling, but please do not fret too much! I was about your age when I first really started having problems. By the time I was finally diagnosed two years ago, I felt very much like you did but now I'm in remission (have been for quite a while) and so it is possible symptoms to improve over time with proper treatment and medication. I know there are many people on here who are suffering a lot and have not yet experienced much relief, but that isn't the case with everyone who has IC. (And those people would be thrilled to urinate only 8-10 times a day!)

I do empathize with your anxiety -- it is a lot to deal with at first, but it is possible to have a positive, fulfilling life with IC. It may take a while before you're able to have sex with your partner with minimal discomfort -- just take it slow and easy. The people on these boards have excellent advice and recommendations for dealing with some of the inconveniences of this disease. Unfortunately, there are always going to be some "worst-case scenarios", but the majority of us lead active lives once we found treatment options that keeps the symptoms in check most of the time. Also, a lot of women worry about getting pregnant, but believe it or not they are many women who experience a remission in their symptoms when they are pregnant. So, there is always hope for a good outcome!

Hang in there -- we're here for you and will try to help you every step of the way!

:grouphug:

[ICNDonna]

Actually only a very tiny percentage of IC patients get worse over time. Most are like me --- I was diagnosed back in 1975 --- thirty years ago --- and during my first years I also worried that I might get worse. I stopped worrying about that a long time ago. I'm doing even better than I was at first because I know what foods and drinks are a problem for me and which treatment options work best.

I worked full time for many years with IC until I took an early retirement when my husband was able to retire.

Donna

[Dees1977]

Thank you everyone for your words of encouragement. This board has been a blessing.

[cass2376]

Hi Dees,
I will keep you in my prayers along with the others on my prayer list. You were lucky to be diagnosed when you were and are able to start treatment, whatever that may be, right away. Since your symptoms are not as bad as others, you are on your way to feeling better already. By the way I have four kids and had IC (even though I did not know at the time yet) through all my pregnancys and did fine. My symptoms were almost gone while I was pregnant and I had four healthy babies and great pregnancys!! So don't worry about it,you will be fine and have a great future ahead of you with your soon to be husband(congrats by the way!:)) and a children someday too!! Take care of your self and focus on the bright future ahead:) If you ever have any other questions or just need a little reasurance we are all here for you!!
God Bless You & you are in my prayers, Cassandra :angel: