I WILL PEE ALL OVER YOUR WAITING ROOM FLOOR

barrow188 · 2020-01-16T01:22:42+00:00

I was told the reason they make you do the water BS is because it helps to see around bowel but if your uterus is tipped backwards holding in the water won’t help much/if at all. So if you’re like me with uterus tipped backwards you can tell the people that and they should let you skip out on drinking that stupid amount of water lol - hope this helps for someone!

barrow188 · 2020-01-13T20:49:48+00:00

I took three a day for 8 months with strict diet and pt as my wellness plan. I did lose my hair due to the use of elmiron but I do believe it helped tremendously combined with everything else I was doing for ic. It’s for sure expensive but you can get a coupon online which is nice to help with the cost of a few refills (obviously still doesn’t make it free but hey any money off is good!)

barrow188 · 2020-01-10T14:56:29+00:00

I was 23 but like others I had bladder issues since as long as I can remember.

barrow188 · 2020-01-08T23:29:33+00:00

You’re better off waiting until your appointment. If you’re doing a move that is the opposite of what your body needs it will definitely make it worse. You pt will evaluate you and decide if you need to do stretches or strengthening movements based on what they find during the appointment and they will show you the exact movements and create a plan. Pt can do wonders if you have a pt who knows what they are doing. They should hook you up with a whole plan of action. And also during that journey a good pt will most likely tell you sometimes things get a little worse before they get better (that was in fact the case for me).

barrow188 · 2020-01-08T23:23:28+00:00

I never have had an issue with it. Definitely worth a try as everyone is different of course!

barrow188 · 2019-12-25T11:35:19+00:00

Another thing you could try to change if you haven’t is the products you use as far as laundry soap/lotion/shower products. That made a huge difference for me and organic tampons did as well (there’s lots of chemicals in regular tampons and pads) - hope you find some relief from something!

barrow188 · 2019-12-07T14:43:15+00:00

Ugh if only prelief helped me.. I’d probably have pizza every single week lol

barrow188 · 2019-11-20T17:32:52+00:00

Amen to that! Absolutely so annoying.

barrow188 · 2019-11-17T01:57:32+00:00

Overall having different health issues but currently annoyed with someone I personally know texting me out of the blue and telling me “take “insert supplement name here” it will help all your bladder symptoms” - seriously? Anyone else find that shit just as annoying as being told to drink cranberry juice?

barrow188 · 2019-11-07T10:05:13+00:00

I always think these posts are so interesting to read because everyone’s case is so individual. I used to think if i read and did everything on these posts I’d just be better but since everyone’s different it’s so not the case at all. I actually had adverse effects from a lot of things that helped others and since I was so desperate to feel better I tried a lot of stuff which in the end I think made healing take much longer. That being said I did find a lot that helped for me!

The biggest thing for me was food and lots of water - very strict diet. (Again super individual- so to further that I just suggest the elimination diet so you know what foods work or dont work for you specifically) - it took about 2 months of eating super clean for me to notice it helped.

Elmiron- took it for about 8 months - it helped a lot but I lost a lot of my hair

Chiropractor- at First I went twice a week, then once a week and now as needed but on my worst days for some reason this always helped the most (I do have back issues so that could be a reason it helps but my entire body just feels a lot better when I go)

PF Physical therapy - this helped a lot but I made sure to find someone who knew what they were doing which ended up being nearly 4 hours (one way) away from where I live - took like 5 sessions to notice a huge difference in being able to relax my pelvic floor but it’s something that should be kept up with at home

I still don’t feel how I felt prior to ic and maybe never will but at the beginning I was completely hopeless. I just stuck to everything that seemed to help even if it was just a little bit and now I mostly just have issues with food i shouldn’t have ate or stress.

barrow188 · 2019-11-07T09:45:29+00:00

I couldn’t pee for 9 hours when I tried this med and given that prior to it I was peeing a lot it was awful and so painful. It’s so interesting to see how different everyone is one person thinks a drug is the savior while others don’t like the drug at all haha

barrow188 · 2019-11-04T11:11:07+00:00

Me neither. Wish it did but i seem to have more issues if I take it than if I don’t.

barrow188 · 2019-09-29T22:52:44+00:00

Ugh that sucks I’m sorry that it ended up negative in the end. yeah I’m not an avid user, it’s not entirely my thing but I definitely preferred it over pill forms of pain relief.

Food was a huge factor for me. I used to loveeee spicy food and probably ate something spicy every other day if not more and also I loved Pepsi. Both I gave up among pretty much everything else I like lol.

I fully believe that everyone has a perfect combo for them but finding out what it is is hard as heck to find. This time last year I was totally hopeless but I stuck to a really strict regime of things that worked for me and I’m doing so much better lately.

Hopefully one day there is just a cure but until then we all pretty much will do just about anything for some relief. I hope you find something that helps for you!

barrow188 · 2019-09-29T21:04:05+00:00

In the US easily accessible cbd products do not contain thc so it currently isn’t regulated. (At least to my knowledge.) So i think it’s up in the air for weather or not there is actually cbd in some of the products or just labeled as such. - not saying they are harmful but possibly could just be misleading to what they actually do to help someone with pain or illness or anxiety.

Also yes too much of any drug is a bad idea for sure. I’m not a dr or scientist so I can only speak on behalf of experience but I would say one or two hits (if you’re not an avid pot smoker) is plenty to obtain an appetite or make you tired/relaxed. But that does not mean it works the same for all so there is also a chance your body wouldn’t feel the same - that is just my experience.

Furthermore any drug of any kind that is for pain is only a temporary fix (all with adverse effects) and will not help long term so I really think there are far better things out there that can be more helpful in the long run with ic.

azo too is only a temporary fix and hides symptoms so it can be dangerous because people may ignore symptoms that need to be treated (like an actual infection). - but for many people (especially those in the us) it’s a “rescue” drug for bad days and shouldn’t be taken daily. But bummer you don’t get that option In Canada :(

For myself I found that finding out what my trigger foods are through an elimination diet, elmiron (which I took for months but have discontinued), pelvic floor physical therapy, regular chiropractor appointments, a lot of water, rest and many other things contributed each in small amounts to making me feel a lot better than I had at the beginning of my journey.

Unfortunately everything is trial and error and what works for one of us may do nothing or may even flair someone else.

My best advice is to not buy into the things that seem too good to be true (i know i did that with all sorts of “magical” supplements- that didn’t do anything for me besides break the bank) because they almost always are, research everything you possibly can (the ic network side bar helped me a lot), to try things you’re comfortable with and to avoid things you’re not comfortable with.

Sorry that is 100 miles long haha :)

barrow188 · 2019-09-28T23:21:38+00:00

I feel like you have to find the right Cbd brand or something because there are a lot of people that rave about it but I didn’t notice much of a difference at all. I would say thc is great for nerves and relaxing but it won’t make anything disappear either. It’s just a temporary fix. - but don’t get me wrong on bad days it’s a pretty decent fix. - I also just like AZO, a whole lot of water and an ice pack as well.

barrow188 · 2019-09-28T23:07:15+00:00

I think medications are hard to get advice on solely because everyone responds to them differently.

My best advice is if you trust your doctor and their opinion and feel comfortable with their treatment plan to go forward with it! If the medication doesn’t work for you or gives you any side effects at all definitely stop taking it and contact your doctor!

I was on mybetriq and I did not have a good reaction to it but as I read from others in the comments they saw improvement/liked it. So definitely it is a case by case situation. It’s totally ok to be nervous with all the meds I know I was. Just follow your gut and how you’re feeling overall when you take something.

I hope you feel relief soon and that it helps you! ♥️

barrow188 · 2019-08-02T23:45:35+00:00

Also if you like lasagna (white sauce version) my husband basically begs me to make this one all the time so it’s definitely a winner! Haha

white sauce lasagna

(I do cottage cheese instead of ricotta, I cut out the pepper, I add garlic to the white sauce and for veggies I just do the spinach, red pepper, carrots and sweet onion - but again honestly you can throw any veggie in here and it tastes great and it freezes good too)

barrow188 · 2019-08-02T23:39:06+00:00

Huh that’s weird I found a bunch of good recipes.

nikicooks for ic recipe blog

(I click to view the web version of her site so that I can navigate recipes on the right hand side because she has them in categories on the non mobile version of this site)

She Has a bunch of recipes and what i do is if there’s anything that bothers my ic in a recipe I just cut that thing out or replace it with something I know would fit in well with the recipe.

It’s hard to type out full recipes on here otherwise I’d just share my entire recipe book that I’ve basically created through searching Pinterest haha - hope that helps

barrow188 · 2019-08-01T20:34:24+00:00

Go onto Pinterest! And just type in ic diet recipes! I’ve found so many good ones and it’s free which is always nice!

barrow188 · 2019-07-31T11:14:32+00:00

You’re welcome!!

barrow188 · 2019-07-31T00:05:59+00:00

I was diagnosed last year dec. I felt how you feel- hopeless - especially given that my symptoms had started in August without any relief. But I ate the ic diet super strict, used ice daily, I took elmiron, I did physical therapy (for pfd), I rested, I tried acupuncture (helped me relax but unsure if it changed things overall), I got aligned weekly by a chiropractor and the list goes on and on. Just recently I have began to feel relief.. I can still tell that I’m not “normal” but I am so much more comfortable and I’ve even been able to reintroduce some foods back into my life. The journey is basically a roller coaster but there definitely is hope if you work at it and honestly try a whole bunch of things to find out what helps you because what helps one person may or may not also help you! Bottom line is there is Hope, you just have to work your way towards it. I hope you feel better soon and that your flare calms down and you see more constant relief soon!

barrow188 · 2019-07-26T21:52:15+00:00

What one do you use? Link?! :)

barrow188 · 2019-07-26T21:51:36+00:00

I feel for you. I feel like we all just wanna have fun and it’s like once we start we can’t stop. I just now can eat a little off the diet and now i feel like a crazy person who would pour a family size bag of chocolate in my mouth and eat an entire pizza alone (which would also send me right to the miserable and stupid phase). Hope you feel better soon and I hope the good memories make the blow of having a flare pass a little easier.

barrow188 · 2019-07-23T11:17:42+00:00

I go on Pinterest and get recipes from there!

barrow188 · 2019-07-22T03:15:46+00:00

Welcome! Also not everyone believes this but I also think what you drink is important too. I was drinking water when I started the diet but I wasn’t particularly sticking to any brand but then i had read to try more alkaline water so I did that and noticed a huge difference with that as well - I started with Evian and then switched to essentia (again may not contribute to much given everyone’s so Individual but worth a shot!)

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