Newly diagnosed. Terrified.

[MaraPM]

I was diagnosed in June with IC. After doing the in-office cystoscopy, my uro told me I have IC. He told me I have an incurable disease and that most medications for it don't work and have awful side effects. He gave me literature on IC and directed me to the ICA Web site. He told me the best thing to do was find my "triggers" and try to avoid them. I am 45 years old, married with a 14-year-old son. I am self employed at a small business where I have a very high stress, high-work load job. I live in a small rural town, an hour's drive (one way) away from the uro's office. I am feeling incredibly anxious and lost. I am currently experiencing intermittent frequency, pressure, bladder pain and mid to low back pain that only occurs when the bladder pain is present. I am a long distance runner -- running is the only thing that keeps me sane. I loved chocolate, red wine, coffee and Italian and Mexican foods (all of which I have given up). I haven't had anything but water to drink in 7 weeks. I also have endometriosis (controlled by oral birth control pills) and IBS. I just want to crawl in a hole and cry. Even though I'm not in crippling pain right now, all the posts on this and other Web sites from people whose lives have been utterly dominated by this disease are horrifying me. I just talked to a lady here in my town who was diagnosed 7 years ago and now has a suprapublic catheter that drains into a bag on her belly. I can't face that! I'm terrified. Does this disease always progress? Should I be doing something more than just following the IC diet rigidly? My uro didn't prescribe any treatments at all -- just "find your triggers." What should I do? Can I do anything?

[ICNDonna]

to the IC Network family.

My IC was diagnosed 36 years ago and I live a normal life. Only a very tiny percentage of IC patients will worsen beyond the initial stage when they are developing IC. Mine did it's progressing during the six months before I was diagnosed.

You'll find a link to the IC diet food list in my signature below. It's a printable list and should help you to develop an IC diet that won't irritate your bladder.

I worked full time with IC for over twenty years before I took an early retirement when my husband was able to retire. I'm still active.

It's important to remember that, for every individual posting that they are in pain, there are literally hundreds out there with IC who are not posting because they feel good and are busy getting on with their lives.

Sending warm welcoming hugs,
Donna

[Pammylynn8]

I was diagnosed in June with IC. After doing the in-office cystoscopy, my uro told me I have IC. He told me I have an incurable disease and that most medications for it don't work and have awful side effects. He gave me literature on IC and directed me to the ICA Web site. He told me the best thing to do was find my "triggers" and try to avoid them. I am 45 years old, married with a 14-year-old son. I am self employed at a small business where I have a very high stress, high-work load job. I live in a small rural town, an hour's drive (one way) away from the uro's office. I am feeling incredibly anxious and lost. I am currently experiencing intermittent frequency, pressure, bladder pain and mid to low back pain that only occurs when the bladder pain is present. I am a long distance runner -- running is the only thing that keeps me sane. I loved chocolate, red wine, coffee and Italian and Mexican foods (all of which I have given up). I haven't had anything but water to drink in 7 weeks. I also have endometriosis (controlled by oral birth control pills) and IBS. I just want to crawl in a hole and cry. Even though I'm not in crippling pain right now, all the posts on this and other Web sites from people whose lives have been utterly dominated by this disease are horrifying me. I just talked to a lady here in my town who was diagnosed 7 years ago and now has a suprapublic catheter that drains into a bag on her belly. I can't face that! I'm terrified. Does this disease always progress? Should I be doing something more than just following the IC diet rigidly? My uro didn't prescribe any treatments at all -- just "find your triggers." What should I do? Can I do anything?

I am new too.. I know exactly how you are feeling!! It is scary to not know what the future holds! I LOVE food too, but about a month ago I finally got tested for food allergies and it turns out I am very sensitive to alot of food like wheat, gluten, dairy, egg, beef, lamb and many more. I had to make changes a month ago and they REALLY REALLY helped my headaches, fatigue anxiety, etc.
For the past five months I have also had the bladder issues pretty bad. I am now adapting my "new" diet to this diet and so far so good. I just read something about how all of the acid in foods can be causing a TON of problems. I do believe this to be true. I think for some people they need a more alkali diet to feel good.
I hope the diet will work for you and find a dr. who is willing to work with you rather than scare you.. that is just not good.
Good luck and hope to get to know you!
Pam

[KathiB]

Welcome. We've all been in your scared and overwhelmed shoes... Sometimes just knowing that you have others who understand and care can make a big difference!

Like Donna said, IC doesn't always progress. The key is just finding ways to manage. Your dr. sounds like he has horrible bedside manners - I'd be looking for someone else. some people go into 'remission' and do not have IC symptoms for many years. There are medications that help most of us. And environmental factors - stress, anxiety, etc. can trigger symptoms, so learning to manage these will help. I know I'm oversimplifying, as this will all take some time to find the best balance for you, but trust me that you will get there!

Everyone's IC is different, but for me, Elmiron has helped reduce my frequency and urgency. I also take an antidepressant - that seems to help me cope better with the pain. I take meds for sleep - getting a good nights sleep where I'm not getting up all night to pee has made a world of difference, for me. I also went to pelvic floor therapy, which requires a special physical therapist. You can get instillations of meds in your bladder, and you might need some pain medication. If your uro isn't offering suggestions, print off some general info about IC, bring it to your primary dr and ask for their help. They should be able to help you work towards general pain control and refer to you to another uro who might be more help.

Hang in there, and let us help you with any questions or fears you might have.

[Rope_Wrench]

not alone

I am just about in the same boat you are Mara. I had my cysto w/ hydro mid June and got the offical news first part of July. Also like you I have an active life and a love for the foods on the "do not eat" list. I am a firefighter so I have had a bunch of issues to work through. I have been sticking to the diet and every now and then trying different things to see what makes it worse. Once you get all the food stuff cut out try one thing to see what it dose. I have found some things have a stronger reaction then others like sodas cause a lot of symptoms and I have to avoid where chocolate seems to only have a small reaction from. The other thing is finding the meds that will help you the most. I have found VESIcare and Atarax seem to be helping me. Only down side I found is I can not take the Atarax when I work. It makes me tired and I can't be loopy while on shift. Good side is at home it really has helped with getting more sleep.
Stick with it and learn what food dose what to you and what drugs can help. It really dose help to know you are not alone. Oh, and something else, STOP SURFING THE NET!!!!! Surfing is what had me the most freaked out. Focus on your symptoms and what your body is telling you. Good luck and keep us all posted.
Rope

[nanawaggs]

HI, Mara ~ So sorry your feeling such anxiety and fear. I remember feeling the same way....IC consumed my life, that of my family as well because that's all I could think about. With time, treatment, and my commitment to the IC Diet, I now live a much more NORMAL life.....one that allows me to manage my symptoms. This is a wonderful site for knowledge, compassion, understanding, sharing advice, etc. It's great that your doctor knows about IC and directed you to the ICA and you're not here also. Sounds like you're on the right track to find what may work for you and it won't be long before you feel better and aren't so frightened.

Like mentioned, hang in there, keep us posted and prayers that it won't be long before we hear happy thoughts from you.

[MaraPM]

Thank you for your supportive comments.

Donna and everyone else,

Thank you for your supportive comments. One of the things I am so frustrated about is that my doctor did not prescribe any treatment. You are all talking about Elmiron and Atarax and VESIcare and lots of other things, and my doc just told me to "find your triggers" and avoid them. He told me triggers were: exercise, sex, food and stress. That's a pretty broad section of my life to try to eliminate and/or modify. It's just really overwhelming. I read that when IC is treated early it is less likely to progress to severe, but I don't think I'm getting any "treatment." I am following the IC diet: I eliminated every food on the "known irritants" list and most of the foods on the "possible irritant" list. All I'm eating right now is a few vegetables, some starches and meat (organic beef, mostly), and all I'm drinking is water. And, I'm still having intermittent bladder pain, back pain, and frequency/urgency. All the same symptoms I was having when I saw the uro. At this point, I've made an appointment with my gynecologist. I want a second opinion to rule out that endometriosis, possibly on the exterior of my bladder, could be causing these symptoms. Then, after that, I want my uro. to prescribe a course of treatment, not just send me home with a food list and a Web site address.

[earthlady]

The second uro I saw said pretty much the same thing and scared the heck out of me. He said he never did instills and never prescribed Atarax and only talked about botox injections or interstim. I left feeling defeated and hopeless. What a terrible bed side manner to scare a patient like that and leave them feeling hopeless. I left him quickly and the third one I saw was so much better, and gave me a lot more hope. She reminded me of how many people end up in remission and/or go on to find what works for them and are leading normal lives.. Needless to say I stayed with the third one. It took a few months of watching my diet for me to see an improvement, so don't get discouraged.

[Jinny Jean]

Hang on, it takes a long time sometimes for the bladder to calm down! It does though and it will.Stick to the diet. For me chamomile tea helps. I also drink just hot water with honey in it, and it's really soothing. Soemtimes hormones make a big difference. Not sure whether going off the pill would help you? I know you said its helping with your endo. I went off the pill and I have been doig MUCH better, now that my own hormones have been able to regulate agian. Everyone is different though! DO TONS of research, (but skip the crazy sad stories, they DON'T help).. and before you know it you will be able to tell the URO what YOU need, lol this is what I have been doing. Trust yourself, you will find something that helps.

Jenn xoxoxo

[wagamama]

Diet is important, but most of us can't manage our symptoms with diet alone. Elmiron and Elavil are two medications that have really helped me. I went from being stuck on the couch in pain last year to living a pretty much "normal" life this year. Yes, I watch my diet, but I also take my medications daily.

It's a myth that this condition always progresses; a recent survey of IC patients revealed that 85% of people actually improve after getting a diagnosis. For most of us, it gets better.

[umannla]

I haven't really known what has been going on with me for 2 years. It all started with my one and only UTI...two drs scoped me, both saying no damage to my bladder. My PT told me that I had a very short pelvic floor and all the ligaments on the left side are torn due to three vaginal deliveries. She did lots of skin rolling across my stomach, legs, glutes, etc. as well as internal manipulation. I couldn't 'open' as she call it. I was in a constant kegel. Skin rolling has helped me as well as lengthening my pelvic floor.

I can tell you as a runner myself, having tight leg & glute muscles can be a bad thing as they can also help tighted your pelvic floor. So, I would recommend you get Isa Herrara's (sp?) book off the IC website and start doing her stretches and roller excercises every single time you run. Just don't make it your goal to be as limber as you can possibly be as I am told that can have a rebound affect. Just try to stay loose. You can also sit on a tennis ball on your trigger points, which seems to help me. I do that at night while I am watching TV or in the car while I am driving home from work. With three kids, if I couldn't run, I think I would lock them in the closet or myself :-)!

I also discovered vision therapy is helping me. Apparently I do not use my right eye correctly and my PT could never get my pelvic floor to stay in the neutral position. Now that I am 'seeing' things on the right axis, I keep my pelvic floor in the right place (it used to tilt up toward the front tightening around my urethra...burning sensation with that). This vision therapy has to be VERY slow over the course of at least a year as the glasses basically have to rewire your brain as it adjusts your entire body to the new view:-). There are also some side effects that go away over time...tiredness, maybe some nausea, but I slept great without meds.

I have also had all my allergy testing done and am allergic to everything. A previous post mentioned she did adjust her diet because of her allergies, and maybe I am going to have to give that a try. I still 'seem' to be able to drink wine &/or a mixed drink and it actually seems to help, but maybe I better log that to see if there is pain 12 hours from that drink. I never ever drink soda any more nor do I let my kids. Soda just cannot be a good thing for anyone when you look at the ingredients!

Finally, you do need to know your triggers. Mine are stress and constipation. I have recently stopped taking all the meds I have been on as they were trying antidepressants on me for stress. They seemed to make me more depressed...bouts of crying...my husband, poor guy, thought I had lost it! I am going to see a new pain doctor here in my town, I am also going to see a psychiatrist for the first time to see what she can possibly recommend as a drug based on my specific symptoms...more anxiety than depression, and I also see a pscyhologist to help teach me meditation, visualization & she recorded one of our hypnosis sessions. These sessions, along with massage, are what made me realize stress is a huge factor for me. After a session and/or a massage I am 99% of the time completely pain free.

I would like to tell you I am completely pain free all the time. ...I am not. My PT thinks I will be that way some day since there doesn't appear to be anything wrong with the inside of my bladder. I have more good days than bad. As everyone has said, find a better doctor....there are some wonderful ones listed on the International Pelvic Pain Society website. This journey may not be a 2 week quick fix like a cold or flu...there will be some trial (you will need to stick with things longer than a month to see if they will work)and error. You may even go back to something a year later realizing that maybe A would work better for me now that I know about B. I would say pay the money to talk to Jill too. I have, and she really put me in a better place with what type of questions to ask myself...what type of doctor to find...etc.

You are NOT ALONE! On the days that you DO & WILL feel better, just remember to post that too :-)!!!!! Take care of yourself.

[MaraPM]

Thank you again for the suggestions. I check on the ICA Web site to see if there were any IC specialists in Montana and there was only 1 urologist listed in the whole HUGE state. Fortunately, he is in the same practice as the one I saw originally. I am going to ask for a consultation with the other uro. and see what happens.

I have ordered glucosamine-chondroitin and Desert Harvest aloe vera caplets and am taking them as directed since my uro. didn't give me any medication. I'm also taking 1 benedryl and 1 Alleve at night, following the IC diet and trying to drink at least 60 oz. of water a day. My symptoms are pretty much the same, no real change: urgency/frequency and intermittent bladder pain. I think the urgency is like torture mentally. I just keep thinking that eventually I'll get "used" to the feeling and it won't bother me so badly. *sigh*

Umannia: Who is "Jill" that you referred to in your post? Also, I am a mid-distance (half marathon) runner, and I use Gu on runs over 7 miles in length. Do you know of a caffeine-free, Vitamin-C free runner's gel?

[KarenAnne]

Mara: I have had IC since 8/08. The first 6-7 months were difficult for me because my diagnosing urologist had scant knowledge & no desire to treat IC. I had to see several urologists before finding one who is the most knowledgeable. And it was not easy going on the IC diet, as described here, either. I had only been married 2 months when the IC hit out of the blue. I could not leave the house for six months, only venturing out with great difficulty to dr. appts.

But I am writing this so you know it WILL get better. I lead a normal life now. I work, travel, go out to dinner, have added alot back into my diet, etc. You may have to see a few uros, try several treatments, fiddle with your diet. For the majority of us, our IC does not progress. I also have several other syndromes associated with my IC, so sometimes it is a juggling act, but manageable.

Some suggestions: Get talk therapy if you are overwhelmed, get a close friend or family member to go to dr. appts. with you, stay strict on the diet while your bladder calms down, find a dr. who will respect you & work with you. Most important, try to find joy where you can every day. Whether it is experimenting with an IC recipe, renting a funny movie with your son, chatting with a friend. Hang in there & please have hope.

[MaraPM]

Mara: I have had IC since 8/08. The first 6-7 months were difficult for me because my diagnosing urologist had scant knowledge & no desire to treat IC. I had to see several urologists before finding one who is the most knowledgeable. And it was not easy going on the IC diet, as described here, either. I had only been married 2 months when the IC hit out of the blue. I could not leave the house for six months, only venturing out with great difficulty to dr. appts.

But I am writing this so you know it WILL get better. I lead a normal life now. I work, travel, go out to dinner, have added alot back into my diet, etc. You may have to see a few uros, try several treatments, fiddle with your diet. For the majority of us, our IC does not progress. I also have several other syndromes associated with my IC, so sometimes it is a juggling act, but manageable.

Some suggestions: Get talk therapy if you are overwhelmed, get a close friend or family member to go to dr. appts. with you, stay strict on the diet while your bladder calms down, find a dr. who will respect you & work with you. Most important, try to find joy where you can every day. Whether it is experimenting with an IC recipe, renting a funny movie with your son, chatting with a friend. Hang in there & please have hope.

Karen Anne, thanks for the hug! I'm feeling a little less hysterical this week. I don't feel "comfortable" or "well" but I'm not in constant pain either, which is a blessing. I want to request a referral to a different uro. but I'm not sure how to go about that. Any suggestions?

[Jadia]

Hi Mara!

I have definitely been in that hopeless/panic place. Like everyone here says though, don't give up! It takes time and determination with IC to get relief and diagnosed but it is possible. I, for one, have never been out of a flare. I have never experienced remission from my symptoms (without treatments) and for me my IC is a 24/7 flare for basically two years. But, that is without treatment. My IC is to advanced for just diet alone, the same for just medication. I am to the level of requiring caudal nerve blocks every few months as well as daily medication to help control the bladder spasms, frequency, and urgency. I was also on narcotics for when I had break through pain even with all that (I say was because I am pregnant and have been avoiding the narcotics completely through the 1st trimester and will continue to avoid them to the best of my ability until I deliver).

What I am hoping to express here is that even with me having to go beyond the diet and medication and all the way into the nerve block and possible interstim implant phase: There is still hope for relief and a "normal" life. When I get my nerve blocks on time and stay on my medications, for me it is as close to remission as I may ever get. My symptoms are basically gone. I can even eat foods on the "no no" list as long as I keep aware of how many of the no no's I am consuming. Like I know I can have spicy Salsa once a week and I am fine. I can drink Ice tea all I want and be fine. I can even do Thai food once a week as well as the Mexican! But if I tried to do Salsa three times + the tea all week...I will need pain killers to get me through the night. So it's all about finding the treatment level you need and then combining that with the knowledge of your triggers. But there is hope for you!

Something else I wanted to mention that you may want to consider...and it's likely going to sound half but...water...is a trigger for me. Just straight up, filtered tap water sends me sprinting for the bathroom every 45 minutes and causes me to have sharp stabbing pains if I drink over 24 ounces in a 24 hour period. I suspect it has to do with something my city adds to it's water supply, perhaps the fluoride content or some other chemical they add. I end up drinking what I can in water, and then drinking alot of anything else I can. Tea seems to work for me, perhaps due to the boiling of the water getting rid of whatever irritates me in it? (not sure, I just know it works better than water lol) I do end up drinking a ton of milk (lactose free milk) as it does not bother me. I also know some bottled water brands bother me, while others do not. So with you drinking 60 ounces of water a day (I can't even imagine that for myself!) and feeling no relief through diet...I am wondering if you might be in the same situation I am as far as the water goes. Just something to consider and try that may or may not help.