Interstitial Cystitis/painful Bladder Syndrome

[BelleVie]

Does anyone have experience with this? Over the past six months or so, I've started noticing the feeling of what I thought was a UTI coming on. The first time it happened, I felt so panicked with the pain that I went straight to the doctor, who did a urine sample and found that I had a very slight bladder infection. I took a round of antibiotics, but still had the pain. Another round of antibiotics. Still pain. There's no way my body still had an infection after those pills! 

 

Now I'm having the pain every few days. It feels like a burning sensation, not when I go to the bathroom, but just when I'm sitting there or laying down. I read on a forum somewhere that someone traced their symptoms to consumption of artificial sugar, so I'm trying to pay attention to that to see if this is the problem. 

 

Any advice on how to treat? I went back to the gynecologist before, and he said that everything is perfectly fine. He even did an ultrasound and found nothing out of the ordinary. 

[LauraTX]

I was diagnosed with IC when I was 18 and still deal with it.  The best website is Open Original Shared Link (that is their page on diet)  They used to recommend cutting out acidic foods, spicy foods and such, but now they don't give as many specific guidelines.  I would definitely recommend keeping a food journal to see if you are able to link symptoms to something you are eating, though.  

 

Also, if you do not have an official diagnosis of I.C., I would definitely go see a urologist.  Before I saw a urologist, I went to a gynecologist over and over repeating the same tests until she brought up I.C.  Not a lot of doctors know much about it, kind of like celiac.  But it is definitely something you cannot self-diagnose.  You need a cystoscopy of the bladder to rule out other things that can cause these symptoms.  I was also sent for an MRI of the pelvis to rule out any abnormal structures in the bladder/urethra.  A cystoscopy of the bladder sounds scary, but if you have ever been through a routine pelvic exam/pap smear, it is less invasive than that, and they do it in their office.  Basically they numb your "area" with a paste (no shots or needles), then put a small scope up there, and they fill your bladder with water so they can get a good look at the walls of it.  Took about a minute.

 

There are a few medicines and even physical therapy for it, but I found nothing helped me.  I did not try the physical therapy, though.  The one thing that will trigger symptoms for me is holding it too long.  Other than that, I have just learned to live with it.  However, I worked with a lady who saw great improvement on the diet.

[BelleVie]

Wow, thank you for that information. I haven't had a diagnosis, I just did a lot of research and came to the conclusion that IC is the most likely issue. You're right that I should get it checked out by a doctor. I may eventually, if it doesn't calm down, but for right now, I am just so, so, so tired of doctors and hospitals. I need a break for a while! 

[1desperateladysaved]

I have had extreme bladder irritation at time.  I got checked for bladder infections, but it was negative.  The doctor thought to stick a tube up to see if the bladder was irritated.  I said, it is irritated, so what do we do then.  They had a drug for it  I would not consider that until I looked up how to get to the root of the problem.  I saw information as above about controlling it with diet.  At the time I already shunned 7/10 foods they recommended to cut, so I eliminated the other three.  I still had episodes; however, going gluten free on top of that seemed to give my bladder peace at last!

[KCG91]

I had recurrent cystitis for 8 months a few years ago (around the time I think my celiac disease was triggered). They never really got to the bottom of what was causing it but in the eighth month three things happened and it went away. One, they did a cystoscopy of the bladder. Didn't find anything but it didn't hurt any more after that. Two, an auntie (cringe) suggested that my boyfriend and I go back to using condoms instead of just the Pill in case all the 'ick' was causing problems (it worked for her) and three, as you've already read, I cut down on sugar. So I have no idea which of those it was but something clicked and I haven't had a problem for about 18 months. I really feel for you though, UTIs and the like are horrible! 

[BelleVie]

Yeah, it really isn't fun to feel constant burning and irritation down there, and with no medical reason! I've started a round of oregano oil to kill off anything IF there is even the smallest infection. I'm cutting all white sugar for the next few weeks (sniff…baking is my culinary sanctuary…), and I may consider the condom issue. I do have a paragard IUD and have wondered if that could be part of the irritation.  In the words of my mother, "It just ain't natural!" to have something in your body like that, but it's the best option I have at this point in life. 

 

Katie, just a question, did you notice if white rice caused your bladder to act up? I'm in the middle of a three day flare up, and I've been eating white jasmine rice for the past few days, which I know is full of sugar. I just wasn't sure if the sugars in potatoes and rice would have the same effects as table sugar. 

 

Thanks! 

[KCG91]

Haha mothers and hormonal contraceptives... Mine is oh-so-suspicious! Just for the record I didn't notice a link between the cystitis and my going on/coming off the Pill. I wasn't paying enough attention to my diet at the time to notice anything to do with rice, sorry! How's it going now?

Just seen this thread with an interesting story about constipation and UTIs. Might not be relevant to you but it rang a few bells with me as C was pretty much my only digestive symptom https://www.celiac.com/forums/topic/105908-can-constipation-make-you-toxic/

[mommyto2kids]

Cut out all tea, soda, alcohol and see if that helps. I was given a hormonal cream to put up in the vaginal area and my IC symptoms are most of the time gone. Watch acidic foods and drinks too. 

[answerseeker]

I was in the ER a week ago with extreme pain and blood and protein in the urine. Doc said either a kidney stone, UTI that spread to kidneys, or possibly IC.

 

I finished my round of Bactrim but if it comes back I'm going to ask again about the IC. Interesting how I just went through this same thing!

[BelleVie]

So update to this: I went to the doctor again with the burning pain. He did a urine test. Found nothing. Again. I could not bear the thought of another hospital visit, and having a cystoctopy (spelling?) sounded terrible, SO my friend recommended taking an essential oil called "thieves oil." It's a blend of cinnamon, oregano, cloves, and maybe something else. It's made by Young Living, which from what I understand is one of the few companies that make oil that is pure enough to actually consume. I love holistic treatments, but I also approach them with a healthy amount of skepticism. I took one drop of the oil mixed with a glass of water every few hours for two days. By the end of the first day, I was feeling better. By the end of the second day, the burning was completely gone and I felt completely normal. I haven't had the pain since. I am so glad that it seems this is not IC, AND that the oil seems to have helped. 

[BelleVie]

And KCG91, rice seems to cause it to flare sometimes, but then seems to make no difference at other times. I think it could also be that my body is still in crazy post-gluten, celiac recovering reaction mode. Who knows? But I'm going to try some rice this weekend to see how I feel. I'm beginning to come around to the idea of being grain free, though. It sounds wonderful, but baking bread and sweet things is seriously the only awesome thing I can still do in my diet! That and coffee. And so help me if I ever have to give up coffee. I'm so grateful that the oils worked, because cutting out caffeine would have been the next step to try and resolve the issue!!

[KCG91]

So glad you've got it sorted I know what you mean about grains and coffee... If you wanted to cut grains out/down look up Elana's Pantry for grain-free baking It can be done!