Scared and frustrated...

[artsychic76]

After having countless pelvic exams, urine tests, x-rays, cat scans,--- all of which results show "nothing is abnormal"--my MD today (and my GYNO the other day) mentioned IC. I have an appt. w. the urologist on the 23rd.

My MD said she would be calling Wed. after my urine test comes back (most likely normal) and that there are medications for IC--and that it was "curable". What I'm reading here leads me to believe this is a life long illness that I will struggle with.

I've spent 2 full weeks in PAIN. Burning, uncomfortable PAIN. I'm only 30 and have been healthy all my life. I am so scared that this will impact my life so much that I cannot enjoy it. My husband and I are trying to conceive and haven't yet, but I'm fearful this will affect it. All of my tests show NO abnormalities or effects from that.

Then I read about medications that do not work--chronic pain--I fear having that forever. I am so desperate, scared and afraid. It's effecting my daily living, my sex life, my job.

Please help!!

[ICNDonna]

It's possible that what you have is IC, but that doesn't mean you will live your life in pain. Most of us with IC have some diet restrictions and most of us do have flares at times, but most of us feel good most of the time.

You'll want to read the information in the Patient Handbook at http://www.ic-network.com/handbook --- and I suggest you give the diet a try beginning today. Even if it turns out that you don't have IC, the diet won't cause you any harm --- and it could help substantially.

Also --- are you a smoker? If so, I suggest you stop for a few weeks at least to see if that helps. Smoking is a known bladder irritant.

Donna

[artsychic76]

No-not a smoker.

I'll try the diet, but Im pretty skeptical at this point, Ive had no acidicy foods, no coffee, no soda, no alcohol, just water and cran juice and green tea.

now I read that those items can be irritating. Ok, conflicting info again. Ugh. I really dont think drinking plain water for the rest of my life is gonna help this alone.

and I eat pretty healthy.

I have no other health issues, Id like to find relief from this, it's taking over my life.

[Claredale]

Cranberry juice is a no no for most ICers. I drink Rootbeer at times, haven't had any problems with that. There are some teas that are okay too. I drink decaf tea (not alot) but again, I haven't seen a trend with the tea. My doctor has definitely said to stay away from cranberry juice. My mom went with me one time (yes I was 40) and just thought for sure that since it was a bladder condition, I should dring cranberry juice.

Good luck!!!

[Tracey5399]

Hi,

You should definitly follow what Donna suggests.
Cranberry juice is the worst thing for someone w/IC.
Dealing with IC can be very difficult & devestating.
You are on the right road, starting with a Uro, i would suggest an IC friendly Uro...yes they do exist and the ICA has a list of every IC friendly doctor in ever state and city in this country 1-800-help-ica.
About the diet, no one said it was fun, in the beginning for me it sucked but you learn how to deal. I have to drink distilled water or evian because all other waters make me flare but thats just me, we are all individuals when it comes to what are triggers are. I suggest a journal and log this stuff down.
There are treatments and an oral medication called Elmiron, alot of us do get better with a certain mixture of meds etc...
I really hope your diagnosis is not IC but if it is you definitly do not have to spend the rest of your life in pain.
There is lots of help out there and most is at your fingertips all you have to do is ask.

I wish you to feel better soon, if you ever need to talk, vent, have questions need info about support groups or doctors or books PM anytime and don't give up, glad you found us.

Tracey :)

[SharonA]

Stop drinking the Cranberry Juice to see if that is causing some of your symptoms. I know I cannot drink the stuff. It's like pouring acid into my bladder. I can drink decaf iced tea all day long. I can also drink decaf coffee, so I like to drink iced coffee once-in-a-while. Every now and then, I can get away with drinking a small amount of the un-cola. But I only do that occasionally. Especially if my stomach is upset. I can even get away with having a glass of wine (red or white) every so often. The trick is moderation, occasionally. Most of us do not have to only drink water. Have you tried Prelief? It is an OTC that helps remove acid from food/drink in your stomach. It helps many of us to do those no-no's in small amounts.

Like Donna said, having IC does not mean that your life is over. I am one of those people Donna mentioned that, with watching what I eat/drink and taking meds, live a pretty normal life.

BTW...:welcome:

[artsychic76]

thank you all for your support. I do hope to have some relief with the medication my MD prescribes on Wed.

A few more questions...

What medications worked for you?

I've heard of Emeril (mixed reviews as to if it helps)

Ditropan

and there doesn't seem to be many others...so Im curious what is working for folks.

Also, did any of you have a scope inserted into the bladder? Did that show anything? That is the last test I haven't had yet. I think they are doing that on the 23rd.

My mom did say something that helped: that there are lots of things like thyroid, arthritis, etc that are also life long things that require maintenance drugs, and if I have to take something for this and it stops the symptoms, then that may be okay. She takes medications for her thyroid and never has any issues. I'm trying to be hopeful that this thing can be rested with medications.

I also wonder about it when a woman is pregnant, since that is something my husband and I are hoping to be soon. I dread having pain like this b/c of pressure in my pelvis, but I guess thats a worry down the road..

any suggestions would be really appreciated.

[ICNDonna]

We call cranberry juice the "acid bomb" --- it's probably the worst thing an ICer can ingest.

And I think your mother is right. I have twin step-daughters with diabetes. They both have insulin pumps now and it's made life a lot easier for them, but each has to carry a pump in a pocket attached to a tube that's inserted into the skin --- and that's much easier than the insulin they both had to inject twice daily.

Warm hugs,
Donna

[Claredale]

I am so glad that other people day that the decaf tea doesn't bother them. I really don't see a difference when I drink it, but don't let anyone come near it with lemon. I know if I bad mouthed my MIL before, but she will not fix decaf tea and everytime I come over, which really isn't much anymore, I just drink water. Even my husband prefers decaf now. And that is her special baby! Rootbeer also is caffeine free. I like it since no one in my family drinks it so I don't have to worry about running out.

I was nice and called my MIL to check on her 3 times this week to see how her cataract surgery went. She has Macular Degeneration (spelling) as well, so she was nervous. It went very well! I even bit my tougue when it came to her never being sick!!

Of course my FIL asked me how I was since he knew I had been in a bad flare, but my mother in law just wanted to make sure that I didn't miss any days from work. But I took the high road!!!! It did make me feel better!

[Freckles]

I am on the following meds:
Elavil
elmiron
hydroxyzine
nuerontin
ultram
fentynl patch.....
I feel like I'm forgetting something. It's hard to keep up, I take so much stuff. I've never really found anything to be that helpful to be honest. The patch helps dull my pain but it never takes it away. My pain specialist is hesitant to increase the dosage and to be honest I've always been afraid of pain meds so I'm trying to make it work. I'm out of work right now. I'm at my worst, I've had this disease for 9 years. I do think most people do benefit from the meds but there are us unlucky ones that have tried everything and nothing really helps all that much. I'm sure you will be able to get relief, the trick is finding a good doctor. That is the hardest part and the one that caused me and still causes me the most grief. I certainly don't want to scare you but make it clear to your physician from the get go that you want someone that will listen to you and not try to play God. You need a doctor that will work with you and help you. I haven't found a good doctor yet. I'm on 6 or 7 now. I tried the diet years ago and really the only things I know hurt me are red wine ( awful) and citrus juices. I eat hot and spicy and it doesn't seem to bother me but the red wine kills me every time. You would think I would stop drinking it, but I only have it rarely. I'm trying now to stop the coffee. I really have never given it up long enough to see if it would help. That is going to be really hard for me. I so wish you the best of luck and you have come to the right place for help and support. I would have jumped off a bridge by now if I didn't have these ladies for support. You can always private message me too if you wish. I'll say a prayer for you tonight that God will find another answer to your symptoms and it won't be IC.
God Bless
Karen

[L. Thomas]

Interesting. I was at my urogyn today and happened to question endo. and he said that IC was indicated in about 75% of patients with endo.

But..IC was not usually treated because it is underlying.
________
GLASS PIPE (http://glasspipes.net/)

[artsychic76]

updates on things:

The appt. went ok. They have done 2 urine tests since then b/c I've had a bit of a fever, thinking there is some infection there. The one from Monday did not show infection, and I did another one today. I noticed some blood on Sunday, but Im unsure if that is related to my period or not.

She did start me on 2 medications, one that (hopefully) will start to rebuild any tissue damage in my bladder, the other an anti-depressant that is also used for pain management and relaxation/reducing swelling of the bladder. I also bought a book on this "Interstitial Cystitis" and it's got a lot of information, but all the implications of having it really scare me. It's not something they can "cure" and it seems like you have to be on medications or a combination of them to deal with the symptoms.

The only thing that really gives me hope of not having it is that I've been feeling this way for 2-and a half weeks. The book says the longer it goes for, like months or years, the more likely the diagnosis. I can't imagine there can be that much damage to my bladder if I've only been feeling it for 2 weeks. I have had UTI's in the past (but I don't think I've had one in a few years) and one instance where my urine was more base than acid and I was given medicine to bring it back to balance, but other than that, I haven't had much problems with it. I always have been someone who pees alot (maybe all of these things contribute) but I don't know. I'm trying not to do what I normally do, which is worry about the worst case scenario, like having bladder cancer or something. I'm far too young for all this! There seem to be some other things it could be, and I am driving myself crazy trying to guess. It's so hard not to tho.

I am seeing a urologist on Monday. My husband is going IN with me to hopefully avoid another asshole. I'm not sure what they plan to do, but I believe that they have to do a procedure as an outpatient thing while Im under anesthesia. Maybe that will be scheduled Monday.

I don't have much else to report other than I'm scared. I have a hard time not "What if-ing" the situation.

What if I have bladder cancer? Different sources keep saying blood in the urine indicates that. Now Im really afraid.

What if I will never get better from this?

What if I can't have children b/c of the pain from this??

What if this effects and ruins my whole life?

What if I can't enjoy sex anymore?

[Freckles]

Artsy....
Please don't panic, that is the worse thing you can do. It will only make your symptoms worse and it can lead to bad decision making on your part. At the beginning I put my trust in a urologist because I was in so much pain I would have done anything to relieve it, and she knew it. I was put in the hospital for the hydrodistention at which time she decided to fulgarate (burn with a cautery) my bladder taking out what they call leukoplakia. I've found out since then that leukoplakia is normal tissue. This doctor obviously did something she should have never done and I have paid for it since. My IC became 1000% worse overnight. I even went to an attorney. I could barely walk for weeks, and I was purple down to my knees for weeks. I should have went to the ER on more than one occasion but I was so afraid of what they might do to me I didn't go and just stayed at home and suffered.

Another Urologist told me I had cancer and this was about 3 years ago. I started crying and said how on earth can you tell me I have cancer when you have done no tests? He said "well it's right here on your surgery report" . He was speaking of the surgery this female urologist did on me. I never was told I had cancer so went into complete hysterics and he told me he would order copies of the reports from the hospital to make sure it was not a mistake. It took about 3 or 4 weeks until I called and finally they had a copy and said it was a mistake, that I did not have cancer. As you can see, I've been through a lot with this disease, but a lot of it was because I was uneducated and desparate. Do not agree to do anything until you have researched it greatly. Also make sure if you go for any procedures you make it clear what they are doing and that they are to do nothing else to you without your verbal approval even if that means waking you up and having to come back to get it done. I really do stress that..... make sure they don't burn anything out of your bladder, especially normal tissue. I found out the hard way that these doctors do whatever makes them money, regardless or your health so be careful.

Most people do get better from the meds, so please don't worry. I have read on these posts that a lot of women actually get better or go into remission when they are pregnant so don't worry about that part of it. It won't ruin your life, you will cope just like the rest of us do. It may change some things and you'll think you can't handle it, but you can. The hardest thing for me is coming to terms with the fact that I may never be able to work again. I was married to a very controlling man ( we're divorcing now) and wasn't allowed to work. Now that I will have my freedom I can't work because it's so painful to sit for long periods and the pain and frequency of the disease. I was layed off at my last job after being humiliated because of my bathroom visits. It will be hard for me, because I loved to work and finally felt like I could do it without my husbands control. Maybe God has something else in mind for me. Maybe working from home? The key to this disease is to stay positive. You'll get through it, we'll help you.

As far as sex is concerned. Intercourse never or seldom hurt me but I did have at least 3 difficult days after. I always was at extra risk of infection so always took an antibiotic afterwards. Also the pain was more bothersome for about 3 days, but with rest and ice it still is worth it to have the sex. I think sex was the only time I ever truly forgot about the disease. You'll still have great sex, don't worry about that. If you have a loving partner you won't have a problem. Some women do experience pain, but I didn't until afterwards.

Please don't be afraid you'll be fine. I think anxiety and worry and stress all make this disease worse so do what you can to stay calm. Remember most women do get a lot of relief from the med's and diet etc. You'll be okay.

I'll keep you in my prayers
Karen

[Jo Jo]

Hi Artsy

I myself have the same thing going on. Please dont panic as Karen has said it does make things much worse. The worse part of having sex was the days later always felt the pain and the pressure which was so uncomfortable. Taking some Urelle or an antibiotic seem to sometimes work for me. Yes , ice and rest works very well. I have now stated PFD which I was afraid to in the beginning but now how I see that everything with the pelvic is connected it makes much more sense.
Just external nothing internal just yet.

Diagnosed 3yrs ago
Elmiron 100mg 3x days
HRT
Dsyrel 150 mg a night

Hugs to you and stay calm:angel: