Newly Diagnosed w/ IC

[Christi Chelle]

My name is Christi I am 22 years old with a wonderful Husband and a beautifull 16 month old daughter!! I was diagnosed with IC in July. I told the doctor that he was crazy, and that there was no way it was possible. I guess I just didn't want to have IC because I was diagnosed with Endometriosis when I was 17. I did not want to deal with 2 different incurable disorders. All summer I remained in denial, until I gave in and came to this website in August. I read about the IC diet and began that immediately. I started feeling a lot better with less flares and less intense!! For a couple of months I really started feeling close to normal again with only a few flares every week and about 1-2 severe flares a month. This was great compared to every day!! So I started to forget the importance of my diet and slowly fell back into the cycle again. Now I am in such intense pain!! It feels like I am urinating razor blades and I get these electrical impulses of pain in my bladder, vaginal and urethral area.

I went to the doctor last week and he did a UA and said it was negative. I will have to admit that I would love to find a more understanding doctor!! He has only prescribed me 40 pain pills since July and is reluctant to refill my prescription. He says he doesn't want me taking any pain pills and I really want to shove something right up his urethra to show him how bad the pain is!! Sorry, I can get a little carried away when I am in a lot of pain!!! He has prescribed me Elmiron but he said it will take 3-6 months before I see any results.

I have started back on my strict diet. My husband is so upset at me and I can understand why. I really want to be the best wife and mother I can be, but sometimes it is so hard to function on a normal level, and I go to nursing school full time and work full time in the emergency room and one of our local hospitals. I barrel through it most of the time; however sometimes I have to take a breather!!

I just always try to remember that God has blessed me with a wonderfull life and he will never give me more than I can handle!!

God Bless!!
Christi Chelle

I also posted on coping with flares board

[theclownster]

Hi Christi! Welcome to the ICN. I'm sorry to hear that you are having such a difficult time. It sounds like you need to get a second opinon with a different uro who has a little bit more compassion. I personally don't take any heavy pain pills, but I am on a few meds that can help with your symptoms before the Elmiron kicks in. If your doc is not willing to try any other methods, you have a right to see someone different.

When I first heard the IC words, my doc gave me a great packet of info (I think it was made by the company who makes Elmiron) - there were a couple different booklets and one or two of them were for your family members. I gave them to my husband so that he could get a better understanding as to what I was going through. It might be worth it if you connect your husband with some detailed information on what IC really is like. You could send him here to the ICN or pick up literature from your doctor. You could probably go to the Elmiron website and request that they send you info.

It sounds like you keep yourself pretty busy with work, school and family. It can be very hard to keep up that kind of pace when you have IC. I work full time, go to school part time, and it's a lot. Take some time for yourself whenever you need it - because if you don't, it will catch up with you.

I hope you begin to feel better soon!

Sending warm healing hugs~
Jennifer

[chavosier2]

hey my name is charity i've couple of months ago found out that i might have ic and i fled like a race horse i keep avoiding my appointments and im scared as all hell the reason im writing to you your 22 and im almost 22 and its great to know im not the only young married mother with ic. and that someone might be able to understand what i must cope with well i've spoken too much get back at me bye bye!!

[Katrina]

:welcome: Christi Chelle! I have endo too and know well that both together is very hard. I am glad you have started the diet it is very important.
http://www.ic-network.com/handbook/ is a vital link for everyone with IC.
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies
:welcome: Charity Hope to see you around!

[michelesgirl]

Christi,
My daughter is 21 and has endo and IC and suffers terribly everyday...I think she needs to buckle down on her diet but she is angry and I think still refuses to really deal...she is on every med for ic plus heavy duty pain meds which she now has built up a tolerence to so they really don't help anymore. I try to get her to get on this site...she still doesn't want to..so I do it for her and tell her that you all are out there and are in pain and young like her...maybe knowing that will help her...

Michele

[trytosmile]

:welcome: to the gang...

I agree, I think you need a second opinion and yes with somebody who is more compationate. Doesn't hurt. I have been to three, all gave me the same diagnose and all where great doctors but for my own piece of mind I did it. It helped and I got different advice from all three and some advice the same.

Here are the names of some books that I refer too all the time. Maybe something your husband could gander through . These are the two that I find the most helpful.

The Interstitial Cystitis Survival Guide
Managing Interstitial Cystitis and Overlapping Conditions

And some advice...slow down. I myself got caught in the workaholic stage and after two years of not looking after myself, I am now on long term disability with the possibility of never returning to the work force. I often ask myself if I had of listened to my body earlier where I be today. I know easier said than done but you only have one body, listen and take care of it.

Jen

[Dixiefireball]

:hi: and :welcome: to the ICN family I made a reply to your other thread I'm glad you found us and remember we are here for you and we do care.
sending you hugs and prayers
Rhonda

[SharonA]

Christi... :hi:

I, like Rhonda, replied to your other thread. :)

[Sarojini]

:welcome: to the ICN!

I think that if you're uncomfortable in ANY WAY with your doctor then a second (or third or fourth) opinion is always in order. If you are in severe pain right now, going back to the diet is the first place to start, you are correct. However, it would help tremendously to have some pain pills to help you get through the days until the diet kicks in again. You (and all of us on this site) deserve to have our pain treated with compassion -- and if your doctor cannot do this for you perhaps a change is in order. Have you tried going to your family doctor or your gynecologist for pain control rather than your uro? Some ladies have had good luck with this approach when their urolgist has been wary of prescribing pain meds.

Please keep posting and let us know how you are doing. I really hope you feel better soon :grouphug:

[mom_in_ma]

Christi,
You're not alone!!! Two years ago, when I was first diagnosed, I was miserable. But, over the years I've gotten myself to the point of remission. Sort of. Most of the time I feel normal and eat normal foods (although, I avoid chocolate, tomatoes and citrus!), BUT when I'm feeling really good sometimes I'll find myself ingesting a diet coke or some spicy food because old habits are hard to break! And then I'll find myself in a flare and kick myself for eating something that I KNOW doesn't work for my body. In fact, just a couple of weeks ago I fell back into the "I can have just one diet coke" idea....STUPID ME!!

That said, now you know. Watch what you eat, talk to your doctor about pain meds, and remember you'll get through this just as you did the last time.

[mom_in_ma]

By the way, the two things that really help me are antihistamines and xanax (for the occational spasm). I discovered the xanax by accident and it truly has been a godsend for me. Of course, I can only take 1/2 a tablet if I want to function, but it works beautifully. A full tablet works great if I want to be totally zonked out for the day!

[Christi Chelle]

Thank you all for your support and advise. I am so glad and relieved to be in a world (IC Website) that understands what I am going through!! I really try to explain it to my friends and family but seems that they will never get it!! Oh well, I have all of you now to devulge to. I am planning on seeing a new doctor soon. On the topic of my busy life, I feel as though I have to do what I do for my daughter so that I can provide for her and I love to stay busy because sometimes it takes my mind off the pain.

I do not drink tap water;however, I do drink processed water that may include chemicals and extra minerals. I will check into that.

Thank you all so very much for your caring support, I really just try to remind myself everyday that God has blessed me with a wonderfull life and I could have worse!!

Thank you so much!!
Christi

[dixieck23]

Something my doctor suggested was inserting a cath into my bladder and instilling a heparin/lidocaine mixture. The heparin is supposed to start rebuilding the lining of the bladder while the lidocaine helps ease the pain. He suggested this on a weekly basis for 3 months until the Elmiron begins to show its effects. I have however been unable to attend most of the appointments due to financial issues however I believe that many physicians use this method.

[jeanniebug]

Hi Christi and :welcome: !!! I know how hard it is to have IC and endometriosis, because I have both as well. The diet can be very challenging at first. In my case, I do follow the IC diet to the letter, and I still have chronic pain. Everyone is different in how they will respond to the diet and treatments, and I truly hope you find your niche soon and your pain will subside. Many people do find alot of relief when following the diet. I just wanted to suggest a book which you can find in the ICN shop..it's a cookbook for people with IC. It's called "A Taste of the Good Life". It has really helped me to have some fun in the kitchen again, and I'm able to get more creative with meals. :) It's a great book to purchase, but it's best to try new recipes once you've figured out what your "trigger foods" are. There are some ingredients in some of the recipes that may bother some and not others. We are all so different in the way our bladders react to foods. If I find a recipe has a trigger ingredient, I simply leave it out if possible or substitute it with something else. I also wanted to mention-you do have a right to have your pain treated. I saw 4 different urologists before I found the one I have now. While I was searching it was horrible but once I hit pay dirt with a great uro...it really paid off. It makes all the difference in the world to have a uro who is compassionate and understanding. They are out there, sometimes it just takes some detective work. Take care and best of luck to you, good to have you aboard! :grouphug:

[mayray518]

I took visits to 10 doctors before I found the right one.
And that makes all the difference. He does not know why I have IC but is sympathetic and willing to try any treatment I want to and he never once called me "crazy."

[TexasHoney]

I know how you feel it took me a little over 2 years to get diagnosed. I went back and forth between my ob/gyn and a male urologist ( who just didn't seem to get it). I swithched to a female uro and got diagnosed with IC almost imedieately (April 2004). I hope you find a treatment that works for you.

Take care, TexasHoney

[IC SARAH-CPP]

Hi Christi,
I am 23 year old woman who has just recently been diagnosed with IC and I know what you struggle with. I have been passed around from doctor to doctor and have only finally been able to find a doc who will give me pain pills and she still only limits me to not very many a month. It is frustrating. Then you have to deal with the social stigma of being "sick" and someone who takes narcotics.
However, that said, I still think you should switch doctors until you find someone who will help you and who will be sympathetic. I think I finally will have that because my doctor has referred me to pain mgmt. I am supposed to go in Feb.
I admire your resolve to have a family, go to school , and work. I worked full time while I was in college full time too and it nearly killed me!! I can't imagine having a family too. You are a very determined woman and should be proud of yorself.
I look forward to getting to know you better.
By the way, my name is Sarah.
Look forward to hearing from you
Love Sarah