Over 9 years of pain, diagnosed with IC 8 months ago.

[Nope]

I'll try to keep this short but 9 years is a lot to cover...

A bit of info to start:
I'm a man, whose symptoms started about 9 years ago, and I just turned 30 in January. I'm from rural East Tennessee about 30 mins outside of Johnson City.

My pain started around my final year of college. One day I had an extremely sharp pain behind my belly button. This pain only really occurred if I tried to move around, stand up straight, or went pee. The pain was excruciating and it would last 3-6 hours. For the next few days, or even weeks after, my urinary tract would be on fire and extremely agitated. Frequency and urgency also became an issue. Pain and irritation were about a 2-4 throughout the day. I only had this happen two or three times my last year of college. Every time I went to the doctor, they didn't find anything.

After graduation, I got a good job at a large company. My symptoms started getting worse and my pain and irritation were nearly constant. My "flare ups" with the extreme belly pain became more frequent (every 4-8 weeks it seemed). Over time, it seemed to me that it was triggered most often by three things.

1. Being very active. Such as being outside mowing and trimming the lawn.
2. Eating poorly and having bad gas. (I've always had gastro issues, sensitive tummy)
3. Sitting for extended periods of time.

These seemed to be the most common factors though occasionally I'd have a flare up with no idea what could have caused it at the time. At this point, the pain the irritation was getting to the point where it was distracting from every day life and made it difficult to function. I ended up finally getting sent to a urologist whom I spent around 8 or so months with trying various medications to reduce my symptoms. During this time period, my prostate started to bother me as well (and still does). When my symptoms weren't being reduced, I went to a gastro whom didn't find anything at the time. I also had a few scans done, requested by my GP, and they found a small umbilical hernia. I ended up going to see a general surgeon to have the hernia repaired. While waiting for the surgery, I had another flare up but this one seemed worse than before. I went to the hospital because I had no other way to handle the severe pain. They performed a scan on me while at the hospital and found that my appendix was on the very edge of what was considered normal size wise. For my size and weight, the doctor at the hospital suspected I had early appendicitis and hospitalized me to watch me over night. My appendix didn't burst and they let me go in the morning when I wasn't in pain. I told the surgeon about my appendix size and he said he'd take a look while he was in and would take it out if he thought he needed to (in addition to exploring to see if there was anything else that may be causing my unexplained severe pain symptoms).

Day of the surgery comes and I go under. When I come to, my surgeon comes to me and says they repaired the hernia with a mesh (which now causes me some swelling and discomfort, YAY!), gut away some fatty tissue that was connected to my bladder, and removed my appendix because it looked even more enlarged than the scans. While recovering from the surgery, a few days later, they called and told me my appendix tested positive for appendicitis (which they called acute appendicitis, which is apparently pretty rare as they usually just pop all at once). After hearing all this I'm thinking that this must have been what was causing all my pain before.

Younger me, full of hope, spent about a month recovering. My urinary irritation never really went away, which already had me concerned. Eventually, I had another flare up which caused my extremely sharp belly pain. At this point, I had already been struggling to stay focused and give my all at my job. I was getting everything done that I was assigned but I wasn't doing anything more than required. Management noticed this and my employee reviews mentioned this (I still don't get this to be honest. If you want me to do more then assign me more.) Now add job security stress into the equation and my symptoms only seemed to get worse. I'm trying to narrow down whats causing this. I'm eliminating foods from my diet. I tried excluding gluten, dairy, and soy. This didn't help, the pain and flare ups were still there.

Luckily, I was able to talk to my old college boss and get a full time job working from home. This made managing my stress and symptoms a lot easier. I invested in a standing desk (which does seem to help most of the time) and continued trying to find ways to cope with my undiagnosed symptoms. I went to various other urologists and a pelvic floor therapist. The closest I got to an IC diagnoses was at the University of Kentucky where they told me I had chronic inflammation. After spending tens of thousands, and feeling no closer to finding relief, I gave up for a while. Dealt with the flares when they came as best I could.

Eventually, I had one flare too many and went to the ER to try and get some pain relief. There, I was given Ketorolac to treat the pain. Now, it's worth noting that I had been taking Aleve or Ibprofen once maybe twice a day and they didn't really seem to help. Ketorolac however would clear up the severe pain within about 20-30 minutes. It didn't get rid of my irritated urinary tract or general discomfort but it did give me quick pain relief for the worst of it and make me functional when took it. After relying on Ketorolac to knock out my severe pain for about a year, I finally had enough of the flare ups again and started seeing more doctors about 8-9 months ago. I went to see another gastro, whom found an ulcer in my colon, and with my other gastro symptoms decided to diagnose me with Ulcerate Colitis (which I'm now taking medication for along with avoiding trigger foods). Additionally, I went to another urologist whom looked at my charts and said "I think you most likely have IC". He handed me a bunch of info, told me about various possible treatment options. He told me to pick up some Prelief before eating anything acidic and take some Azo to relieve symptoms.

So now I've been trying for about 8 months to cope with IC and feeling that I pretty much have no hope of ever getting better. I've changed what I eat entirely. I eat a very bland diet in order to avoid triggers. I haven't really gone out to eat much at all in years because of how terrible I've felt. Overall, I still feel pretty miserable all the time. I still get severe flare ups. I rely on Ketorolac way more than I should, given it's not meant to be used for long term pain treatment. Honestly though, I'm just tired. Very tired of fighting this and not feeling like I'm getting anywhere. My two remotely comfortable positions are standing and laying down. Sitting is just uncomfortable for me and it stresses me because I'm afraid I'll have another flare up. Even with this, I'm still trying to do more research. I want to find some relief and that's why I joined!

To summarize:

My symptoms:

1. Occasional really sharp belly pain behind my belly button. Excruciating when I try to stand up all the way or when I pee. Feels like someone is yanking on the back of my belly button.
2. Constant urinary irritation, pain, discomfort. Especially after physical activity or sexual activity.
3. Sore abdomen, could be from standing could be from this. I don't know but I can't sit for any length of time without being even more discomfort or causing I flare up it feels like.
4. Urgency and frequency
5. Gastro issues like gas, frequent trips for #2 visits (2-3 a day which is normal for my UC diagnosis and this medication I'm on).
6. General lack of focus and depression from my other symptoms.

How I currently Manage:

1. Medications and supplements: Azo, Prelief, Lactaid, Saw Palmetto, Probiotic, and Mesalamine (for Ulcerative Colitis management)
2. Distractions: I try to distract myself as much as possible from the reality that is my pained existence. This includes sports, TV, film, and especially games with my friends and family (be it digital or board based). At this point, distractions from reality are the only things keeping my sanity in tact.
3. Walking: I try to walk as much as I feel able to do without my symptoms getting significantly worse.
4. Drinking lots of water: I refill my bottle probably 5-6 times a day.
5. IC diet: I've been on it for about 8 month but unfortunately it hasn't really helped with the general discomfort. I do think it's helped prevent more flare ups though.

What I'm trying to do about it:

1. Research what else I should get tested for to verify it's IC and make sure it's not one of these many other possible conditions I keep reading about people finding they have after an IC misdiagnosis.
2. Find something else to help with the pain besides Ketorolac. This means researching to find better doctors whom treat specifically IC and/or finding a pain management specialist. Either I don't know how to properly search for medical help or East TN is as dead a zone as I fear it is for medicine.
3. Find support from people whom suffer from similar problems I have. Which is why I'm here!

Thanks! First time I've really written all of this down for someone else to read. It was kind of therapeutic in it's own way.

[ICNDonna]

It sounds like you've really been through the mill. One thing I can think of that you didn't mention is keeping a detailed diary, noting everything that goes in your mouth, activities, urinary frequency, activities, pain levels --- that way you might come up with some irritants you aren't aware of. I think it's great that you are following an IC diet --- it's not 100%, but works well for most of us --- keeping a diary might come up with some triggers where you aren't the same as all of us.

Sending warm healing wishes,
Donna

[neohioic]

I"ve been taking nitrofurantoin for about 1 month now at 100mg per day. I take along with my 2 x's per day 1000mg hiprex. I"ve been doing really well. I will get a blood test in a few weeks after being on nitrofurantoin for 6+ weeks and hiprex for 4 months to make sure kidney's and liver are ok. I read alot of bad things about nitrofurantoin which is also known as macrobid if you take it for a long time like neuropathy, lung problems, and kidney/liver problems but this drug is WORKING. This drug is used as a prophalaxis sometimes because the nice thing is it doesn't kill gut bacteria too much because almost all of it gets secreted into the urine by the kidneys. There is also very little bacteria resistance to this drug. I guess that is because so little of it goes to the gut, gut bacteria which ultimately go into phesis aren't resistant to this antibiotic which is why it works so well. Maybe give this a try. I"m a guy too buy the way. I had bad prostatitis at one time. They gave me a month of bactrim at big dose and that handled that. I hope this good feeling continues. Some days are not great, but most of my days lately are the best they have been in a very long time. Maybe try the nitrofurantoin for long term. I have a 10 month rx. You should be able to find a doctor to write a rx for this long term.

[Nope]

Thanks for the kind words and suggestions. At the moment, I'm searching for someone nearby that specializes in treating bladder disease so I can get a number of the tests I see people suggesting on here that I haven't been giving by standard urology.

[ICNDonna]

Thanks for the kind words and suggestions. At the moment, I'm searching for someone nearby that specializes in treating bladder disease so I can get a number of the tests I see people suggesting on here that I haven't been giving by standard urology.

An IC diagnosis is partially made based on ruling out other possible problems. A voiding diary can be helpful as well. If you suspect IC, I suggest you mention your suspicion to your urologist. I hope you are diagnosed soon.

Donna