Wondering if this could be IC and just looking for support.

[matt009au]

Gday, I’m a 35 year old male who over the last few weeks have been having some urinary issues.

The first instance occurred approximately 3 weeks ago when my wife and I ordered Indian for dinner - that evening I was awoken every hour with a urgent need to urinate. However, by the next day the feeling had disapated and I thought nothing of it.

A few days after this my wife was taken To hospital for a week with pneumonia, leaving me to look after the kids. On returning home she was bed ridden so I was still doing the run around. During this period I must admit I was absolutely exhausted. My 2 and 4 year old were kicking my ass - not sleeping at all!!! I don’t think I’m cut out for this parenting thing.

During this time my diet was pretty poor - with large amounts of tomatoes sauce based pastas made and reheated for lunch and dinner every day.

Cut to a couple of days ago - and in the evening I got this strong urge to urinate, however on going to the bathroom nothing much came out and the feeling or urgency persists until today. I don’t think I got any sleep at all. The same occurred the following evening (yesterday) albeit I got a few hours sleep due to exhaustion. In the morning I hauled myself to the GP who told me to get to the ED for a bladder scan and tests to make sure I wasn’t going to explode.

After a day in ED I was released with some Alpha blockers and a referral to a urologist. The problem still persists, however, I have found some relief from not drinking anything ... prkbably not healthy and I feel deathly dehydrated. Also urinating sitting down allows a little more to come out it seems which brings some momentary relief.

in the ED they tested urine twice for infections both negative. They took blood work and did a prostate exam both which came back normal. The only abnormal test was the bladder scan which showed a little bit of urine retention after voiding. My urine stream was also weak.

the feeling of needing to go persists 24/7 to some degree. And when I do go nothing much comes out, or just a weak stream of I have held it for a while. I do find if I don’t drink anything the urgency lessens some. But I don’t think this is sustainable long term. After 1 day I have cracked lips , felt dizzy , and saw spots in my vision. sleeping on my side curled up in the feral position is more bearable than on the back or front.

just wondering what people’s thoughts were on this and if it could be IC.? I was wondering if the crappy tomatoe base diet for 2 weeks and the stress and exhaustion could of triggered something. Over the last 6 months I have noticed on occasion that when getting up at night to urinate my stream might stop and start occasionally. But not all the time. I never really paid it much thought as things seemed normal in the morning.

anyway, thanks for listening. Just feels good to have someone to talk with. I haven’t regally wanted to bother my wife with my worries as she is still recovering.

Matt

[sueworld]

I'm so sorry to hear what you've been going through. As a IC sufferer myself for over 20 years now, it does indeed sound like you have IC. My advice would be is to seek out a good Uro and also in the meantime try the IC diet as like myself it seems your bladder is effected by what you eat.

[matt009au]

Thanks Sue! Glad to have found a community as sometimes I find just being able to talk about something helps.

funnily enough I found out this morning that my brother actually had something similar in the past. Went through all the urologist stuff for a year and they never found anything.

have been trying the diet for lunch and dinner today. So bland - I need to find some sauces and seasonings that I can use!

[sueworld]

It will depend on how inflamed your bladder lining is I'm afraid. Many of us who are food/medication sensitive have to tread a careful path. I myself was in a right old state after my cystoscopies years back, and went on a extremely strict diet, consisting of 80% alkalising foods (mainly vegetables) and 20% histamine producing which is meat or in my case chicken or fish. You can look up online low histamine foods and you'l find some lists. I stuck with an extremely strict version of that (only eating cauliflower, peas and a little bit of salmon or chicken each day) for over a year, and I went from barely being able to walk without extreme pain to nearly normal. The only thing is unless you're careful it doesn't stay that way and so you have to balance things sadly for life.

[ICNDonna]

First of all, I'd like to say to the IC Network. I know you'll find a lot of helpful information here.

Yes, it's possible that what you have is interstitial cystitis. I was diagnosed 46 years ago and have found that stress can absolutely increase symptoms. Diet can also be very important --- it can take time to build a bladder friendly diet that also tastes good, but it's possible and well worth the effort. Drinking enough can also be important; I know my bladder gets unhappy if I don't get my six to eight cups of fluids daily. If I'm going somewhere that doesn't have ready restroom access, I can avoid liquids for part of a day, and I do that sometimes, but I know I will have to make up for it later in the day.

I suggest you keep a voiding diary to share with your urologist --- you could also note foods, drinks, etc., to see if you can identify irritants. And --- you may find that sitting to urinate will be best for you --- I suspect it makes it easier to relax.

Sending well wishes,
Donna

[matt009au]

It will depend on how inflamed your bladder lining is I'm afraid. Many of us who are food/medication sensitive have to tread a careful path. I myself was in a right old state after my cystoscopies years back, and went on a extremely strict diet, consisting of 80% alkalising foods (mainly vegetables) and 20% histamine producing which is meat or in my case chicken or fish. You can look up online low histamine foods and you'l find some lists. I stuck with an extremely strict version of that (only eating cauliflower, peas and a little bit of salmon or chicken each day) for over a year, and I went from barely being able to walk without extreme pain to nearly normal. The only thing is unless you're careful it doesn't stay that way and so you have to balance things sadly for life.

Thabks Sue!
hmm they have given me a referral to a urologist for a cystoscope ... maybe I should be postponing that from the sounds of things....

But of a bugger looking at this diet for life ! Would be great to have a recipe book for some ideas!

[matt009au]

First of all, I'd like to say to the IC Network. I know you'll find a lot of helpful information here.

Yes, it's possible that what you have is interstitial cystitis. I was diagnosed 46 years ago and have found that stress can absolutely increase symptoms. Diet can also be very important --- it can take time to build a bladder friendly diet that also tastes good, but it's possible and well worth the effort. Drinking enough can also be important; I know my bladder gets unhappy if I don't get my six to eight cups of fluids daily. If I'm going somewhere that doesn't have ready restroom access, I can avoid liquids for part of a day, and I do that sometimes, but I know I will have to make up for it later in the day.

I suggest you keep a voiding diary to share with your urologist --- you could also note foods, drinks, etc., to see if you can identify irritants. And --- you may find that sitting to urinate will be best for you --- I suspect it makes it easier to relax.

Sending well wishes,
Donna

Thanks for having me Donna! I drank more yesterday and just tried to stop after dinner. Got a few hours of sleep at least which was a blessing.

good idea on the diary. I did something similar when I was trying to work out my migraines. Trouble is that the list of available foods just got a bit smaller from the looks! I’ve been successful the last two years with a restrictive diet similar to keto to manage my migraines. Really hoping that hasn’t caused these issues. :s

any hints for some recipes? I’ve been holding off on any sort of seasoning, including salt, or anything dairy - I don’t suppose any one has any advice on those ? Also would something like plain Greek yoghurt be ok as a bit of a sauce? Thinking about trying a chicken and salad wrap with a bit of yoghurt.

thanks matt

[ICNDonna]

I know that at first an IC diet can be a real challenge and it can seem like there's not much that tastes good. I don't have a problem with dairy, except for some of the cheeses. I do okay with cottage cheese --- I have even used it as a base for a salad dressing --- I put it in my blender and added some herbs and used it on lettuce salads. When you feel better, you can begin adding some things to your diet, one at a time, until you have a diet that actually tastes pretty good.

Donna

[matt009au]

Thanks Donna will give that a try. I had to add some salt in yesterday - I ended up feeling dizzy and having headaches without it. The headache is still persisting but hopefully it gets better.

[matt009au]

The other thing I was wondering about was if my anti migraine diet has impacted the bladder. Basically I eat everything except processed carbs, sugars, and stuff with preservatives/additives. In reality it means that I don’t have pure carbs that often unless the meal has brown rice (although I’ll eat plenty of legumes and carb rich verges) wondering if I could of entered ketosis or something unintentionally while the wife was in hospital and my diet was more limited .

[ICNDonna]

The other thing I was wondering about was if my anti migraine diet has impacted the bladder. Basically I eat everything except processed carbs, sugars, and stuff with preservatives/additives. In reality it means that I don’t have pure carbs that often unless the meal has brown rice (although I’ll eat plenty of legumes and carb rich verges) wondering if I could of entered ketosis or something unintentionally while the wife was in hospital and my diet was more limited .

It's possible --- I think there's an over-the-counter test strip to test for ketosis --- you might want to check that out.

Donna

[matt009au]

Thanks Donna, hoping this damn thing calms down soon. Been nearly a week and had some mild relief a day or two ago , but things have ramped up again today
how long does a flare up normally last?

[ICNDonna]

Thanks Donna, hoping this damn thing calms down soon. Been nearly a week and had some mild relief a day or two ago , but things have ramped up again today
how long does a flare up normally last?

It can depend --- especially if the flare is brought on by something you are still doing. Have you tried a diary to see if you can identify irritants? Limiting fluids can actually extend a flare --- if that's the primary reason for a flare, it can take several days of adequate liquids for it to calm down. Did you do anything different just prior to feeling mild relief?

Donna

[matt009au]

Thanks Donna. I have been keeping a food diary - seems the days I ate more potatoes and rice were my better days. So I’ve upped my intake of those and added oatmeal in the morning instead of eggs. Having a better day today thank goodness.

I also invented a little chicken fried rice recipe using some organic Karri honey, sea same seeds and a pinch of salt to give it some flavour. Been a life saver !!!

had a follow up with the GP yesterday. Every test they did came back normal, except lymphocytes (so) which were slightly low. Which is good. But also somewhat frustrating. They are doing one more test. An MSU I think the doc said. Will wait and see if that shows anything...

[ICNDonna]

I hope you have an answer soon --- I think my most frustrating time with IC was before I was diagnosed --- not knowing was my worst time.

Warm hugs,
Donna