My First Blog: IC Frustrated!!!

[Kiver12345]

Hi! My name is Kelly and this is my first blog EVER.

I started having frequency and burning last August and after a few months I started one of many doctor's appointments. I was referred to an Urologist. After several tests in January they figured out that I have a mild case of IC. The doctor did not officially diagnose me because I was told that if I ever switch insurance the insurance company may not take me. I am on Elmiron and have been working really hard with the IC-diet. Every week for the past three weeks I have been going for electric shock therapy. The Urologist wants me to try 7 session of electric shock therapy on my bladder. The first week I did really well but lately it has not gotten better. I am very frustrated. I don't go anywhere but to work. My mother has been doing my grocery shopping. I have no desire to shop, go out to restaurants, NOTHING!!! I am on buspar, for anxiety, because I have begun to have panic attacks. The thought of going somewhere that does not have a bathroom close by is very stressful.

I am a teacher and this is the worse job that I could have right now. I am getting to the point where I cannot function at my job well. I am truly considering looking for something where I can stay at home. My bladder is truly in control of my brain. To have a life is to be stressful. I am 26 years old and I am growing white hairs on my head.

Today has been a really bad day. I am so sick of this. I want to be normal. I want to live a normal life. I want to go where I want and not worry and stress about having to go to the bathroom.

Can you relate? I want to know that I am not the only one out there feeling like this!!!

[Claredale]

Welcome to the ICN. I am sorry that you had to join our little group, but I hope that we can give you some help and support.

I haven't heard of electric shock therapy with IC, so I don't have any advice there. It is important to get a diagnosis so that you really know what you are dealing with, so how did he determine that you have IC? By your symptoms? It's great that you are following the diet.

Hugs, Tracey

[Kiver12345]

I was getting to the point where I was going to the bathroom every 30 minutes and 6-7 times a night. The Urologist did a series of test.
1st Tests consisted of: Uroflowmetry, CMG, Urnalysis, Voiding Pressure Study.
2nd Test what a Potassium Sensistivity Testing which killed my bladder. I could barely get around the next day.
3rd Test was a cystoscopy.
After that I met with the Urologist and he said that he had hope that I would get better. I have bladder and urethreal spasms. He also said that I urinate like a 90 year old with a football sized prostate. How lovely was that!!!

The electric shock therapy consists of a probe that I insert through my vagina. I sit for 15 minutes while the eletric shock goes on. Has anyone had this treatment before???

[Claredale]

I went through what my PT called ultrasound which confused me since I thought it was an "untrasound". But it was a probe that they inserted, but it didn't shock me.

Are you on meds for freq/urg?

T83

[leelee88]

Hello and :welcome:

I know it seems hopeless, but please know that things can get better with the right combination of meds. Don't give up. Read and recearch as much as you can. And talk with your Dr about trying you on something that can help you with your symtoms..

[IC SARAH-CPP]

I did the electric shock therapy too and it is so excruciatingly pain hun! I know what you are going through. I stuck it out for so long but I just couldn't handle it after awhile b/c the pain lasted for days after I had the treatment done.

I understand what you are saying about the diagnosis. So he said you had IC but didn't "officially" write it in your paperwork so that the insurance companies don't give you a hard time in the future, right? At least we know what you are working with.

Following the diet is great, I am happy you took that first step. It takes many people, myself included, a long time to finally commit to following the diet strictly. I was so sad to be giving up almost everything I loved to eat :( but the pain I had after I ate those things just wasn't worth it after awhile.

I too am 26 and I know how hard it is to basically have your life shut down around you. I don't have the magic coping mechanism for you but one thing that has helped me is to pick up new things I am interested in that I can do at home. Yes it is hard to be at home all the time when you are not at work but it also sucks to go out and try to do things when you are in awful pain and terrified you are going to pee your pants if you get stuck somewhere and you can't find a bathroom or you are last in line to go.

Everyone is different but some things that have helped me stay distracted at home are; scrapbooking, reading and studying WWII books, politics, yoga, this website and other chronic pain websites, photography, movies and TV, and writing in my journal. I write so much in my journal and that helps me deal with things a lot of the time. Basically anything to keep your mind occupied is a good idea. We tend to feel depressed when we get bored and cooped up.

Also just one more thing. The first year after you receive your diagnosis is often the most difficult for IC patients. Not saying it gets easy after that but I know that for many of us that first year is particularly tough b/c you are just adjusting to a huge life changing illness and you are basically grieving. Grieving for the death of your old life. And that is okay, it is part of healing and in my opinion it is a healthy part of the healing process.

Hang in there hun! I am so happy you found us. This website is actually my NUMBER ONE source of comfort and strength for my IC.

sarah

[Kiver12345]

Thank you for all of your support.
Sarah you are right...I am grieving for the deah of my old life. When I read that I just started to cry. I think that is why I have been getting so upset lately. I am so glad that other people feel the way that I do. For awhile there I was feeling very alone.

[alycat]

Hello fellow first year!

I have had IC for just over a year. And I agree, the first year does kinda suck. At least your doctor recognizes that you have IC and is willing to work with you. I've never heard of the electroshock therapy, but it sounds painful to me! The diet can do wonders, I know it helped me before my PFD started up full swing and really got me.

I also can sympethize with the grieving of the old days. I still do that sometimes; remember something I used to do without a care and start crying. It's hard when it starts suddenly: one day you're fine and the next you're in pain. I'm actually at the point where I'm reconsidering my future career (I'm currently a college Freshman) because it would be too physical with IC.

I definetly suggest finding something that you love that you can do at home. I found that if I can get into a 'zone' with something I love (right now Art and Video Games), I forget about the pain and can actually go for a pretty long time between voids (My current record is 3 hours. Whoopee!).

I wish happiness and good luck to you.

[Claredale]

There is a grieving process with IC that is for sure. Alycat gave some great advice. I found myself very down especially when I was diagnosed with severe IC. I had a wonderful doctor that encouraged counseling and for me to keep a journal. I also have friends that have alot more problems, cancer themselves or lost one of their children to terminal cancer, then I too lost my brother to cancer a couple of years ago. I learned that when I don't focus on what I am losing out on, but what I can do, I have done so much better, even healthwise. It helps to be your own advocate and be determined to get the treatment that you need. I found a doctor that knew I wanted to keep working, even though I couldn't keep working at my job that I worked years to make it my career, I found another job that allowed me to again focus on something besides IC. I know we are all different in how we manage dealing with this desease. I did take some time off to allow my body to heal, which was absolultely necessary, but within a few months, I knew that if I didn't go back to work, I would fall deeper into depression. I am a very active person that just has to get up and have a purpose. My kids were grown, so they didn't need me as a "mom" anymore. I knew I couldn't work at a stressful job, but after lots of prayer and support, I was able to find a job that met all my needs which in my case was another huge help for me. It wasn't really even about the money, it was about me not allowing IC to take what I loved away from me.

IC is not the end of the world, even though it is such a debilitating disease. Through support and prayer, I have managed to see the good things in most everything now. Remember, if one treatment fails, there are other treatments to try. I have even gone back to treatments that didn't work before, but they did the 2nd time around. Getting on the right combo of meds and getting your bladder back as healthy as possible is a great step forward.

Hugs, T83

[sandberg4]

I'm sorry you have this disease. It is depressing. I find when my bladder is irritated by something I eat or a medicine I take, I urinate small amounts and frequently. Sometimes its the little things, cereal, ibuprofen, aspirin, decongestant, vitamins that really flare you. Sometimes its something you would never have suspected. It's trial and error.
If I behave, I can go for hours without urinating. I still get up once a night though. Depends on how much water I drink.
There are many more treatment options that IC'ers take. Elavil and an antihistamine help some with pain and urgency. Read the many posts on here to get some ideas to take to your doctor.
I can control my symptoms just by diet. And if I'm really good, I can add a nono in occasionally.
Good luck. I hope you find something that works.