Feeling really desperate :(

[babyelephant]

Hi I'm new here. I'm 20, from England and over my life have displayed cystitis symptoms, which have been 'treated' with antibiotics, gone away and then eventually returned. However this time the spell has lasted 3 weeks or so, getting worse and worse and they now believe it to be IC. Reading this posts makes me feel so sad, I sincerely hope I can get on with my life and this disease. I don't get pelvic/abdominal pain- I just get a sort of sore/burning pain down below, pain when I wee and frequency- almost no relief when I go!

I'd like to hear about those of you who have been diagnosed but live normal lives- you have jobs, kids, you travel, you have loving and sexual realationships. Please let me know you are out there as I feel pretty defeated right now! Or tell me your story of diagnosis, and how it's gone since.

Thankyou so much in advance, I'm feeling really desperate.

[kadi]

Dear babyelephant (I love your screen name!),

I have had IC for 5-1/2 years now. It took awhile to find my treatment plan, but today I can say that I live a fairly "normal" life. I still have flareups, but:

•I work fulltime as a high school teacher,
•In my "spare" time I study American Sign Language (someday I'd like to do trilingual interpreting for the deaf: English, Spanish, ASL)
•I go to the gym & use the elliptical trainer, rowing machine, free weights
•I attend church
•I go out with friends to the movies, to the beach, small day hikes
•I travel (Since I got IC, I've been to Oregon, Vancouver BC, San Diego, Texas, North Carolina, Spain)
•I wear jeans almost daily (I couldn't wear them for two years when I first got IC)

I could not do any of these things consistently or well when I first got IC. IC interfered with just about every aspect of my life - what I ate, what I wore, where I went, how long I stayed there, what I could/couldn't commit to. And just to give you an idea of how far I've come with this: when I got IC, I was voiding 60x a day, completely unable to sleep more than 20 minutes at a time, could not wear jeans, drive longer than 15 minutes, could barely work even with my very loving coworkers helping me, lost several friendships. My family was so confused as to how I could get an illness no one had ever heard of that even my family relationships were strained.

I'm telling you this to give you hope. The hardest time with IC is getting to the diagnosis. But once you have the diagnosis, learn the diet & which foods are good for you & which ones trigger symptoms, & begin trying your medical treatments, life gets better.

Hang in there. If you've not tried out the IC diet yet, do consider testing it out for a month to see if it will help. Many patients are helped a lot with just that one intervention. And do read up on IC as much as you can. There are many strategies you can use to break a flare & to manage the IC overall.

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Here are a few resources you might find helpful:
The IC diet:
http://www.ic-network.com/diet/

List of specific foods for the diet:
http://www.ic-network.com/diet/dietcheatsheet.html

Self-help strategies
http://www.ic-network.com/selfhelp/

Managing IC flares
http://www.ic-network.com/selfhelp/flares.html

There is an IC cookbook published in the UK, "Recipe Book for IC: Interstitial Cystitis" by E. Murphy, for £5.99.

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Sending a hug & wishing you better days soon,

[ICNDonna]

:welcome: to the IC Network.

I know reading the forums can make interstitial cystitis sound like it is hopeless, but for every individual posting here because they are in pain, there are literally hundreds out there with IC who are registered here, but no longer need support because they feel good and are busy getting on with their lives.

My IC was diagnosed 34 years ago and I do live a normal, active life. I am retired now, but I worked full time for many years after my diagnosis.

It may take a while to find which treatment options work best for you and which foods and drinks are a problem, but most of us do get there.

Sending encouraging hugs,
Donna

[SharonA]

In August of 2001, I went running to an urologist because of the unrelenting, severe pain I found myself in without warning. It actually came on in one day. That morning I was fine. By the afternoon, I began to run to the bathroom every 2 to 3 minutes feeling like I was going to burst, but only urinating a drop or two every time I went. By evening, I was in dire pain.

I originally went to see my PCP so I could be tested to see if I had a bladder infection. Nope...All was clear. The nurse suggested I see a urologist, which I did. I was diagnosed with IC but was not offered any medication. The uro told me that he only did DMSO instills which I really did not want to do until all other oral options were explored.

My husband found this website and I spent hours and hours reading everything on it including keeping up with what everyone was posting about. Because of the ICN, I discovered that diet was very important for controlling symptoms and I began trying to find just what foods/drinks bothered me. I also began researching all the medications that people were using and how they worked for them.

During that time, I found another PCP who knew about IC and suggested I begin my medication search with Elavil. The day after my first dose of 10mg, I felt so much better. The pain was almost gone. Over the next couple of months, the doctor and I tried different strengths until we found that 25mg was the best for me.

Now, after several years of taking the medication and learning what items in my diet are problems for me, I live a pretty normal life. Yes, I do have a flare occasionally, but they do not last long nor are as painful as what I experienced in the beginning.

I do not work for wages, but am able to do what needs to be done to run a household and keep my husband fed, happy and secure in the knowledge that I love him with all my heart.

It really is possible to find the meds/treatments that will enable you to have a full and productive life despite the bumps that having IC cause. You have every reason to believe that you are no different than any one who has discovered what helps them and are able to go about their lives pretty much the way they always have.

Please take the time to read the information available in the links Kadi listed. Jill (our fearless leader :)) has done a wonderful job compiling the best and latest methods of dealing with IC. Do spend some time reading about the IC Diet and the meds/treatments that can help you.

There is help and there is hope. Never give up on yourself. :):):)

[ericau]

Wow! Thank you ladies so much for posting your stories. It gives us newly diagnosed a light at the end of the tunnel. I was thinking I would have to quit my job and live a life full of pain and suffering. Now I have some hope!

Erica:pray:

[c2miracle]

Hello "ericau", glad you have found this wonderful and supportive site. I was diagnosed last year and I'm still in the trial and error phase, with foods and medications. I have a very supportive husband and two daughters that help out as much as they can. I do work full-time and have fun on the weekends, if I'm not "flaring". I even ice skate with my two girls! There will be good days and not so good days, you just have to think positive! Right now I am in the middle of a horrible flare, which I'm trying to figure out the cause. Was it what I ate? Is it stress? You could drive yourself crazy worrying and feeling hopeless, or you can be strong and say you will get thru this. Think Positive! :smile tee