Help! I have questions! I' so Depressed!!!!!!

[noah'smom]

Hello Everyone!

I was diagnosed with IC about a year ago. It came on all of a sudden. I went in for wat I thought was another bladder infection,and the doctors treated it like that too. It just didn't go away though. After a couple rounds of antibiotcs and cranberry juice pills they sent me to the specialist. Is it normal for the disease to just comeon so suddenly? My bladder infections hadn't been chronic.

At first I was so bad off and combined with the fact that I already struggled with severe migraine, neck pain and mild depression this just about did me in! I really wondered how and if I was going to want to continue to live this way. Suicide honestly crossed my mind more than once.

Thanks be to God the Elmiron started helping in about 3 months. Soon I was doing so well I began to think I was healed! I could eat and drink anything in moderation. Well, I ran out of the meds one day and sadly found out I am not healed. Still I had that Elmiron!

Here is whats scaring me though. All of a sudden for no reason again. I hurting quite often and I'm even eating carefully. What's going on?! Am I just getting worse really fast? Can Elmiron quit working? If so, I think I'm toast!

Here is my other burning question, no pun intended. This is personal but important to all of us, So please, no weirdo responses ok. My sex life has never been the same since IC, not only because of the minor pain I feel during intercourse, or because of the infection I ALWAYS get after it but I can not climax the same way. At first I couldn't climax at all, now I can but barely, never with the same amount of feeling as before. It's like at a certain point all feeling just goes numb, like a switch gets flipped. Could this be from the meds? Could it be from the disease? Is my sex life over ?!!!!!!! That Is really depressing!!!! This disease already takes so much thats is enjoyable out of life! I know God doesn't curse people but sometimes I feel cursed
! I have to admit it. I ony hope that somehow someway I'll be able to help someone else someday because of the lessons I've learned from this blasted IC!

Finally, my doctor told me that getting pregnant with IC is risky. You have a fifty fifty chance of the disease getting worse or better. What do you people out there think? Has this disease robbed me of that too?! That will be really hard to cope with!!!!

Oh, One more REALLY important question. Can anyone recommend an outstanding Urologist and even better if they were female. It doesn't matter what state they are in.

I know this is long. Thanks for any help you can give me. I'm really terrrified, afraid my future isn't looking too bright, The doctors don't seem to have the time to answer questions. I have books but I want answers from people who are dealing with this rotten situation. So, again thanks from the bottom of my heart.

God Bless! :bow:

[patricia1]

Hi Noah's mom I will try and answer some of your question from my own experiences. I have had IC going on for over 9 yrs now. Not an expert in the field of IC just somethings from my own IC world....ok!!!

Here is whats scaring me though. All of a sudden for no reason again. I hurting quite often and I'm even eating carefully. What's going on?! Am I just getting worse really fast? Can Elmiron quit working? If so, I think I'm toast!
Sometimes the elmrion can take anywhere from 6mths to a year to start working. It does not cure IC, it helps repair the bladder lining. Even eating carefully you can still flare. Sometimes flares come from other things like stress, sex, other sickness. I have been sick all week long and mine is flaring badly from this. Alot of times IC does not get any worse than where you are at now. It can seem as though it does but it is normally from flare ups. Usually by the time of diagnosed you bladder is at the point of where it will be staying at....

My sex life has never been the same since IC, not only because of the minor pain I feel during intercourse, or because of the infection I ALWAYS get after it but I can not climax the same way. At first I couldn't climax at all, now I can but barely, never with the same amount of feeling as before. It's like at a certain point all feeling just goes numb, like a switch gets flipped. Could this be from the meds? Could it be from the disease? Is my sex life over ?!!!!!!!
Yes IC can affect this. Sex can cause flare ups. But there are things you and hubby can do without actually doing it. There are many people on here that have problems with it and some that dont...

Finally, my doctor told me that getting pregnant with IC is risky. You have a fifty fifty chance of the disease getting worse or better. What do you people out there think? Has this disease robbed me of that too?! That will be really hard to cope with!!!!
I have not had a baby after getting my diagnoses. I believe the c-sect birth of my son caused mine. But there are many people on here that are preg. now and can help you. Also on this site is pregnancy journal from one of the ICers that did the journal through her preg. Yes some go into remission and other dont. But dont let IC rob of your chance to have a baby. They are gods mircales.

Oh, One more REALLY important question. Can anyone recommend an outstanding Urologist and even better if they were female. It doesn't matter what state they are in.
There is also on this site list of qualified urologist, pain specialist and so forth that deal with IC. You might want to check it out.

I hope you start feeling better soon.

[ICNDonna]

If you stopped taking Elmiron, it's not surprising that your symptoms returned. Elmiron can ease symptoms to the point where you don't think about your bladder, but it's still a temporary fix. You also may need to follow an IC diet even with elmiron.

IC patients do have babies --- and many have reported that their IC was the same afterwards as before. Some find they go into remission while pregnant, others have reported feeling horrible throughout pregnancy --- all seem to agree that the end result is well worth it in either case.

My IC was diagnosed thirty years ago and has not worsened. Only a very tiny percentage of IC patients find it to be progressive.

Donna

[tigger_gal]

I am one of those very tiny percentage of IC patients that has progressed. :(
I hope you find relief and doing well.
Brat