How do you accept this?

[graceunderfire]

Hi All,
I have been lurking on this forum for several months now, and have finally decided to come out of lurk mode.

Since 2000, I have been having what I thought was recurrent bladder infections. The frequency of it was maddening. No matter what protocol I followed (wiping from front to back, urinating after intercourse, showers before and after intercourse, TONS of cranberry juice, etc.), I couldn't stop them from happening.

I began to have "stock" in Macrobid, even though it never seemed to completely relieve my symptoms, it did somewhat help (why is that?). I thought I was just becoming immune to the antibiotic.

When I brought up my concern about frequent "bladder infections" to my family doctor, I was told that bladder infections are common in females, and it's "just the way it is" sometimes.

Well, I have a wonderful Ob/Gyn who I have been seeing, and told her about my frequent bladder problems. She said that the next time I have an "inflammation", we needed to do a complete culture on the urine (not just a dipstick). Much to my surprise (although not hers--she had already began suspecting IC) the culture came back negative. She referred me to a urologist, and the urologist also suspected IC after I told him my symptoms. For the past several months, we have been tracking my urine cultures when I get a flare (about 1-2 times a month) and every culture has come back negative.

Since my Ob/Gyn's initial diagnosis, I have undergone a lot of tests to rule out other possible problems (voiding cystourethrogram and IVP). All tests have been negative for any abnormalities.

In the meanwhile, I have been learning A LOT about IC. I realized now that cranberry juice was only aggravating it, not making it better! (Which explains a lot on this side of knowledge!) I have also realized that a big trigger for me is not just the foods I love (like Asian foods, Indian foods, etc) but jogging (which I do regularly), hormones, and sexual intercourse.

The past week, I had a really bad flare (not necessarily unusual, but for some reason I thought it was not just a "flare"). I thought for sure, this time, I had a bladder infection. My urine was cloudy, it smelled different, severe pain on urination, etc. I gave a urine sample on Monday. The nurse called back today and said the lab results were once again negative.

I don't know why I was surprised. I think a big part of it is that somehow I am still in denial. I think to myself, "How in the world did I get this weird syndrome? I'm a healthy, young girl. This can't be happening!"

Well, just today, the nurse told me that the doctor wants to do a cystoscopy to rule out cancer or something else before giving me a full IC diagnosis (which is probably wise). So I will be scheduled for that as well as the overdistention treatment in the next couple of weeks (they are just going to do it all at once while I'm "under").

I don't know what to think about it all. Although I've come to accept that this is likely what I have, I know my heart hasn't fully come to terms with it yet. My head says, "Okay, Grace, this is what you got. Live with it" yet my heart says, "This can't be... There must be some sort of mistake!"

And then of course, I do get paranoid and begin thinking, "What if it IS cancer?!"

Sigh.

Are these feelings normal?

Grace

[Claredale]

Yes, your feelings are very normal. You seem to have a great attitude about it. Yes, it is hard to accept how a healthy girl can have this. I was 23 when I started having my symptoms which were freq/urg. I never had a bladder infection or a single bladder issue in my life, so the urg/freq came from out of the blue. It actually hit me while I was traveling on a cross country vacation. I was fortunate to be diagnosed within a few weeks of my symptoms, which was unusual especially for 20 years ago. I know when I had my surgery, my doctor dropped the cancer word just prior to my surgery. That didn't even occur to me. Back then, there wasn't much info to go by, so I didn't have many resources to read up on. I remember him saying it was so unlikely, so even when I came too, I wasn't worried about that, which of course was negative. Just mild to moderate IC and for the most part, my symptoms stayed minor for a long time. My IC did in up progressing, but that is not very common.

I am glad to hear that you are following the diet. I was fortunate as well that I already pretty much was on a very similar diet since I have Eczema which flares with acidic food, so I didn't have to make that many changes in my diet for the most part.

I know we all have our share of bad days, but as my former doctor told me even recently, don't ever let this disease (if that is what you find out you are dealing with) ever make you feel like a victim. I know it's easy to say that. I have just come out of a few bad months that I had days that there were days I truly lost that thought. I started a journal years ago that I try to write in as often as possible. Mainly to remember that I have great days, good days, not just IC days. My manager at work even asked me one time when I truly thought I wasn't going to return to "normal" again when it was that I felt my worst. I remembered that it was well over a decade ago. That showed me that I came out of that time period in my life and I would again. It also reminded me I wasn't even close to where I had been at one time.

I am glad that you have taken your time and read about things. There are so many stories and people on here that have pulled me back up more times that I can count.

I am praying that your surgery will be all good news and that you will heal quickly!

Hugs, T83

[ICNDonna]

:welcome: I'm glad you finally decided to post.

It sounds very much like you are very concerned about what's going on with your bladder. I suggest you check in with a urologist and discuss your concerns. You may find that you do have interstitial cystitis, but not necessarily so. I think my worst time was before diagnosis when I was very worried about what I "might" have --- once I learned it is IC, I was able to begin taking some steps to feel better and better accept that I needed to make a few changes.

Your feelings are entirely normal.

Warm hugs,
Donna

[leelee88]

Hello and :welcome:

Denial in the beginning is normal! Then you come to realize you do have this condition and the slowly it starts sinking in..What made it easier for to accept was thinking of it this way.. This is not any different than people getting diagnosed with Diabetes, Arthritis, High Blood Pressure, Endo, Fibro...ect.. So we just have to learn to deal with what we have the best way possible..
And once you find what works for you it does make things easier. The thing about IC is that there is just not a whole lot of research that has been done on it. There are meds out there that can help you though! It is just finding the right ones for you!!

SO hang in there, be your own advocate, do as much research as you can about this disease and you will be ok..

And if you need anything please do not hesitate to ask!!!

[Sally939]

What you are feeling is 100% normal!!!! The above posts seem to hit it all. I just want to add that when you get on the right meds it will get better. The thing that was so hard for me at first was the idea that the rest of my life will be filled with this pain. I just did not think I could live with all that pain. The wonderful thing is I do not have to. With my meds and diet I do pretty ok if not great. I have bad days but I have more good days. With out my meds and diet I would not have the great days. If it is IC you will be ok. Hang in there it is a bumpy ride.

[graceunderfire]

Awww...thank you guys! This website and forum has been a huge source of information for me in the past several months, and now it's become a source of support as well. Thank you!

Claredale, your early experience really seems to mirror my own. Prior to Spring of 2000, I never had any bladder problems either! Never had an infection, the experience of urgency, the burning, nothing. And it also came out of the blue for me, too, while I was traveling. I was 24 at the time.

My urologist did tell me that bladder cancer was unlikely considering my age and health history (no family history, I don't smoke, I'm healthy otherwise etc). That made me feel "somewhat" better (although I can't seem to drop the fear of the possibility). Also, once I started learning about IC, and how diet affects it, I noticed changing my diet really helped minimize the frequency as well as the intensity. Keeping a "flare" journal also helped me discover that I am most likely to have an episode around my ovulation times. So it does seem that an IC diagnosis is likely. As you said, Donna, the not knowing is probably the hardest part. Once I know for sure, then it will be easier for me, I think.

At this point, from the stories I've read as well as the symptoms described, if I do have IC, it is pretty mild-moderate I think. The pain is uncomfortable, but definitely tolerable. Sort of a "grin and bear it" type of pain right now... If anything, it's really more of a nuisance.

I have a few questions that hopefully someone out there will be able to answer:
1. Does the bladder sometimes heal itself and spontaneously "cure" itself of the disease? In other words, is this a chronic lifetime thing, or does it sometimes run it's course and then it's all better again?
2. If it isn't likely to improve through "running a course", does it often get worse with age?
3. Is there a correlation to stress or emotional trauma?
4. Is it considered an autoimmune disease?
5. Does it increase your susceptibility to bladder cancer?
6. Are there theories out there as to why it seems to start in one's 30s? (I heard that study somewhere, but it didn't speculate as to why).--I'm more just curious about this one.

Thanks guys. Blessings to you all.
Grace

[ICNDonna]

I'll try to answer your questions:

1. Does the bladder sometimes heal itself and spontaneously "cure" itself of the disease? In other words, is this a chronic lifetime thing, or does it sometimes run it's course and then it's all better again?

If you have interstitial cystitis it will not cure itself. It's pretty well a lifetime thing. I'm hoping there will be a cure found in 2009!

2. If it isn't likely to improve through "running a course", does it often get worse with age?

Most people with IC do find effective treatments and with diet adjustments, do feel better as time goes on. I have had diagnosed IC for 34 years now and am not worse.

3. Is there a correlation to stress or emotional trauma?

Stress and trauma can both cause an increase in symptoms.

4. Is it considered an autoimmune disease?

Most feel that it is.

5. Does it increase your susceptibility to bladder cancer?

No. At least I've never seen any studies that say it does.

6. Are there theories out there as to why it seems to start in one's 30s? (I heard that study somewhere, but it didn't speculate as to why).--I'm more just curious about this one.

That's just statistical information. It can start any time. There are small children with IC --- and I met a lady who developed IC after her 70th birthday.

I hope this helps.

Donna

[BT2008]

Hello Grace,

I am sorry to meet you under these circumstances, but :welcome: to the IC Forum!

We all gather here -- day and night -- to share our experiences of living with the disease that we all share in common. And Jill, the owner of the board and forum, keeps us posted on all the new and cutting edge news regarding IC. There is no place like it on earth--or in cyberspace!

You wrote:I don't know what to think about it all. Although I've come to accept that this is likely what I have, I know my heart hasn't fully come to terms with it yet. My head says, "Okay, Grace, this is what you got. Live with it" yet my heart says, "This can't be... There must be some sort of mistake!"Depending on the day or hour of the day, either one of these options is usually foremost in my mind! I know what I have, and I know I will have it for the rest of my life, in some form or another, but--I still cannot help myself from thinking: "This can't be... There must be some sort of mistake!"

I have probably had IC for quite a few years now because of my frequency and urgency issues, but I never consulted the docs about it at all. I just assumed that it was the way my bladder was going to be in my old age! But, on June 14, 2008, I was hit with the severe pain that can come along with it. Then, it took 3 more months to get a diagnosis of IC and start treatment.

Even though you sound like a very solid, steady, young woman -- I was too (okay...not the young part, tho' ... lol), and this has, without a doubt, been the single most challenging experience in all of my 49 years. So, be prepared for a roller coaster ride until you can find the treatment that works best for you. Unfortunately, my coaster is still rolling fast and furious!...:rolleyes:

I have to keep reminding myself on a regular basis that I was never "superwoman" although I have accomplished quite a lot in this life! And I am proud of all my accomplishments. So, even though I know I have IC and want to somehow come to terms with having it, for some reason, I think I should still be "superwoman" with my IC and somehow find a way around it, over it, under it, or just make it disappear altogether! But--IC is a very persistent adversary! And I struggle with my new reality every day! So, yes--your feelings are quite normal!

As far as the potential for cancer is concerned, I have read time and again that there is no evidence that one leads to the other. So, try not to worry about that one!

Now, I don't want to alarm you, okay? But, I do want to be honest with you. As far as the disease progressing over time, and I truly hope this isn't the case for you, I did suffer from mild symptoms of IC for many years (as I noted above) and then suddenly one evening my whole life was changed in an instant. My IC reached critical mass! So, in my case, yes--IC is a progressive disease.

But I must say--and you will read this over and over again--that the #1 Rule of Thumb for IC is this: What happens to or works for one IC sufferer does not necessarily mean the same thing will happen to or work for every other sufferer.

The good news for you? I didn't follow the IC diet all those years, because I had no idea that diet had anything to do with my frequency/urgency issues. And you do!! You are now empowered to hopefully prevent the disease from getting worse as you get older.

I know that the symptoms you are already experiencing are no picnic! But the more severe symptoms can be devastating! Be kind to your body and take all the precautions you can to prevent -- if possible -- your IC from getting worse! You need not give up all of the things you enjoy--you will just have to learn to be careful and creative! And there are a lot of helpful hints to be found in these threads!

Please take care, and keep us posted! Know that one or more of us is always here for you. And let us know the results of your cysto/hydro. That seems to be a turning point for many of us, in many ways.

Peace and love to you!
~Beth

[statesboro]

I decided I would chime in. I did notice you have gotten some good responses by now. Donna did answer your questions as well as I would have been able to. I feel sure you will let us know what you find out after the procedure is done. By the way, you have found a good place by coming on here. Yep! We do understand. Many people will not. Most of us do look healthy, but you have been told we are living with a chronic illness.(and many of us more than a single medical condition) Anyhow, I was diagnosed over 11 years ago. Sometimes, it is still hard to accept. Oh! Mine seemed to come out of the blue all of a sudden. (although I had never heard of IC before) You did learn to drop the cranberry juice. Ok, then. It will be good to be properly diagnosed. (although we don't like this disease at all) Oh! I did not see your age, but I happen to be a 42 y/o male. Ok. It is past 3:00am now, and I am definitely tired. (work 6:00pm-2:00am) Take care and be good.

[graceunderfire]

Thank you guys, for your responses and answers. And for also sharing your personal experiences. I'm not sure when the hydrodistention and cystoscopy is yet (the nurse still has to confirm a date for me). I've been reading a lot about the procedures on this forum, and I'm trying to remain calm! I admit, I'm a little more nervous now about the whole thing than I was just a couple of days ago. Maybe that's part of the acceptance...

Thanks again. I'll keep you all posted.

Grace

[syrabeth]

I'm there with you and could use some advice too!.. but I'm only 19.