Interstitial Cystitis (IC) Support Group

Well.. I'm pregnant with my first.... so I don't have a baby yet...

but other then that I know exactly how your feeling...

I think we all feel that horrible at first ........ remember that you are not alone! that other people have been there and that things do get better!

Your life right now may not be how you planned it .... but just because you can't see where it's headed doesn't mean it's not heading somewhere spectacular...

It takes a long time to find therapies that can work for you....

my advice would be to learn as much as you possibly can about this disease and become your own advocate! learn therapies and print out articles and bring them to your doctor to discuss with him! that helped me immensely...

instead of letting the situation with your son make you feel less worthwhile realize just how worthwhile you are to him! He needs you.... and I know it seems impossible right now; but try to snap out of that depression...

depression makes IC pain WAY worse... any emotional stress for me is a HUGE flare up trigger... if you have to get on anti-depressants DO IT! there isn't any shame to that!

I find that journaling helps me sooo much...... I actually more specifically write letters to God... and I tell him EVERYTHING that is on my mind.... sometimes I even scribble huge words across the pages like I'm yelling at him... he knows what is in our hearts anyway! I'll spend hours doing this when things are really rough and it seems like after wards everything seems to fall into place amazingly...

if you don't feel comfortable writing to God I still encourage you to just write out how you feel... when we think we tend to have a million different things bombard our minds at one time... but when you write you have to think things through because it takes time to write it out.....it helps a lot

which is why I say write... and not type.....

sorry if this wasn't much help

my AIM is LaraMarie123

my myspace is www.myspace.com/laramarie123

my yahoo is mrslaramarie@yahoo.com (but I don't get on it very often)

feel free to contact me anytime!

it won't feel this way forever

***********HUGS***************

I really wish I could give you a real hug right now, but I guess this will have to do. First, know that we are all here for you, to support you, however we can. Second, remember you are "AJ024", not IC. I know that sounds kind of silly, but sometimes I have to remind myself that I'm still a person; I'm NOT IC. Third, like LaraMarie, I find that journaling works. I personally use a gratitude journal where I write 5 things I am thankful for everyday. Next, learn about diet, but don't drive yourself nuts. Try to figure out what your big triggers are (for me it's tomato products, chocolate, pop, and alcohol) and avoid them or at least use Prelief when you eat them. Finally, try exercising regularly. I find that exercise decreases my pain level quicker than anything else. I don't know, that might just be me, but it makes such a HUGE difference for me, I would recommend at least giving it a try. You ARE a great Mommy. Right now is time to take care of yourself first. You are going to get through this!

3 years ago, I was in the exact same boat. I realized something was terribly wrong when I got pregnant for the 1st time. To make a long story short, I had a c-section, a hysterectomy, gall bladder removal, endo surgeries, and hyper distentions of the bladder within the past 3 years. You have to find strength from the ones you love and keep going for that baby! Elmiron did nothing but suck out my money. I also had no insurance but I found a great URO that sees me only when I'm in pain. I took LoEstrin FE (completely stops the menstrual bleeding) and now I take my hydroxyzine, amitryptaline, and Celexa (depression med used to help with pain)... It's taken the past 3 years of my life (and all of my daughter's) to find the right Medicine combination that works best.

Realize that the people who leave you during this horrific time in your life aren't the ones you need to be surrounding yourselves with anyways... You need people who listen (even if they don't completely understand what you're feeling)... this site helped me through all the tears and anger for a good deal of my time... once you realize that you can't control the hand you're given, you will be able to get a plan and push towards getting in the right direction for you and your baby. Take care of yourself, b/c if you don't, you won't be able to take care of anyone else either.

Keep searching for the right doctor, the one who is willing to give you option after option until you find the right one for you. Everyone is different, so don't ever let anyone tell you "well this never works" or "this always works" b/c they'd be lying.

All in all, stay true to you and that baby... relax and don't let stress eat at you b/c it'll only make the pain worse. Get informed, know what the doctor is talking about, be one step ahead, when he says something didn't work, be ready to ask about another option... YOU be in charge --- IC will keep eating at you until you make it stop. You're not alone... even though you feel like it. You're doing the right thing here... it may seem silly to say you're a part of a "support group" - I thought so too... but this is the only thing that helped me cope in the early stages of my diagnosis.

Be strong and if you need to talk more, let me know!!!

I do understand. I have a 10 month old daughter and was diagnosed with IC when she was about 6 months old. I have had a mild case of IC for a few years now (I am 33) but none of the doctors I discussed the matter with made the connection. My OB is the one that figured it out. I had a natural childbirth that we all thought went quite well, however, something happened that freaked out my pelvic floor muscles and sent everything into a tailspin. Anyhow, I understand your frustration - having a child is stressful enough without the constant pain and irritation of IC. My husband and I have been married for over 8 years and, even though we have always had a very solid relationship this has been a tremendous strain on us. I have not been able to be sexually active at all since the birth as the pelvic pain is my biggest problem. I found the advice for alternatives to intercourse to be helpful: http://www.ichelp.org/PatientInfor...
I must admit that I did need help in this area as I am simply not in a very "giving" mood...I am angry, in pain and and little resentful that his life is perfectly normal while mine is in complete upheaval. With that said, I decided that a little "giving" is more than worthwhile - he has been incredibly sweet and supportive in this process and it is not his fault either.
For me, I have found the diet to be most helpful thus far. I adhere to it very strictly and have also eliminated wheat and gluten which (to my dismay) has helped considerably. You are at an unfair advantage given your insurance situation. Hopefully you will be able to get it back soon. It also sounds like you may not be getting the best medications either - you may have to experiment with different antidepressants before you find one that works. For me, it seems that being proactive is the best remedy. Don't be afraid to voice your concerns to your doctors. Every day is a struggle, I force myself to shower, get dressed and try to go about life as best I can. With me, I found myself growing more and more depressed. I was sure that my husband was going to leave me, that I was a bad mother and that I was failing at my job. I realized that I was most likely simply creating a self-fulfilling prophesy and none of that was really true. It is so hard to pretend that everything is okay when you feel so terrible. However, I remind myself that nothing good comes from self pity and stress definitely causes my symptoms to worsen. I look at my beautiful little girl and my husband and remind myself that there is a LOT to be grateful for and that gets me through the day. You are not alone!

Oh, I was in exactly the same place you are for about the first 2 years of having this disease. It never seemed that I would pull out of it...I wanted to die. I figured my son would be better off without a mother who was in my condition. But believe me, IT GETS BETTER!! I've gone through a lot of different medications ...Right now I take a bioidentical hormone and Elavil everyday and if the pain gets bad I take Ultram and a xanax... I only take them when really necessary...But knowing that I have something to help the pain makes my life so much easier. I also think that once you have had it for awhile your body and brain start to learn how to cope...It just gets easier!!

AJ024, all of these comments and advice are great. Each one of us has gone through so much and very much understand what you are going through. I am 52 years old now, and have experienced many many years of IC and bladder infections since I was a teenager. There were times I wish I could die. When I was young, doctors told me it had nothing to do with diet, but I knew it had at least a little something to do with it because of at least one thing for certain that set it off for me, and that was any type of carbonated drinks. Then years later a doctor told me that doctors now know more than they did when I was young, and that too many women have complained about these kinds of pains after eating certain foods/drinks. I was on a lot of different drugs over the years, and as I got older, than pain increased horribly till it became unbearable. All of the drugs either stopped working or helped very little and I suffered some very unpleasant side effects. I am very fortunate now to be associated with a doctor that believes in nutritional therapy. Dr. Hastings says it is not only what we eat, but what we are also lacking in our diet. I have found that to be absolutely true in my case, and I now am able to keep the IC and bladder infections under control with Dr. Hasting's counsel. Please do some research on Dr. Carl Hastings and find out for yourself. You've gotten a lot of good advice from all the ladies here, and I pray you will find what best works for you. My love to you. Mary

I have a two year old who is EXTREMELY ACTIVE!!! It is hard for me to put him in the carts at the store! Yes there are days where i am going off of no sleep and I have to run around after him. I have turned my downstairs into his play room everything is child proof so that I can lay on the couch and let him run around, it is so much easier that way. I do limit my trips with him to the store because the lifting of him gets harder and i always feel like i have to pee or im going pee on myself!

Any questions let me know. I am here and dealing with the same thing you are!
Melissa

I would REALLY recommend also exploring some alternative therapies out there. They are cheaper than most Western drugs but the only problem is they won't be covered by medicaid. There is a great book called "Along the Healing Path" by Catherine Simone about a woman who overcame IC using only natural therapies. It is self-published, which means it's going to be more expensive then a company could print, but it will be the best $25 you could spend right now. She has lots of advice in it about how to buy things cheaply in bulk and how to use them. There is also a wonderful website called evenbetternow.com that has lots of safe alternatives without the side effects of Elmiron. I have tried both and have found the natural remedies work faster (2 weeks compared to 3 months) and are MUCH safer and easier on my system, with no side effects like headaches and nausea. There is a wonderful homeopathic doctor on that site that you can email or call for free advice. He might know some cheaper options as far as products they sell go. He has WAY more knowledge than even my urologist! I spent about $150 on their products (which will last about 3 months). I have only been on this stuff for 2 weeks and my flareup is gone and I feel great! I really feel like I have taken control of my own health and I fully plan on being symptom-free before and after the birth! :) Please do all you can to relax and control your stress, because stress is IC poison. It is wonderful you have an understanding boyfriend so just relax and enjoy his support without worrying. Your biggest job right now is to take care of yourself and get healthy, for yourself and your family. Even though most Western doctors have only one or two options to treat IC, there are MANY options out there that they are simply not trained in. Do lots of research and you can overcome IC!! Good luck and good health