Interstitial Cystitis??? Oh god I hope I don't have it

[Deir]

I've been writing a few posts about what I thought was a UTI although my only symptom is constant urinary urgency. I finally relented and took cipro and now the culture came back negative. I am frustrated in so many ways and really really upset. iI made the mistake of googling "urinary urgeny no infectin" And I keep coming back to Interstitial Cystitis which sounds like a nightmare. I am so worried that I am going to feel like I have to pee 24 hrs a day forever. It doesn't sound so bad when I read it here but it actually the worst thing I've ever experienced. I'd take my 30 weeks of morning sickness over this.It's flared up 3x since Thanksgiving and the latest has been since monday So for 5 days I have felt like I need to pee all the time. I almost feel like i am going to lose it. In my reading about IC- there are people who have that for months and years at a time!!!!  Has anyone experienced this? 

[tanyalynn]

Search for JaneS's posts on interstitial cystitis, she found it was related to salicylate sensitivity... we have a wiki on the topic, should have JaneS add in the research she's done.  The wiki doesn't talk about IC but it talks about improving salicylate tolerance (and there are links on low sals diets which would help IF that's what's going on).

http://www.mothering.com/community/wiki/artificial-colors-and-salicylates-and-the-feingold-diet

[Panserbjorne]

I've seen it be sals and/or oxalates.  It's also very frequently in gluten sensitive individuals-even ones who are off gluten, interestingly.

[Deir]

 Wow. Thank you for the links. I am finally feeling slightly better. I have an appt tomorrow with my holistic midwife. I am really wondering about salicylate sensitivity. I have been on a restricted diet due to my lo's mucus in her stools. Do you think I could have brought this on from od'ing on apple cider vinegar? The amine thing really freaks me out because I am so into making stock and I really thought that was just unequivecally "good" for you. sigh.... Sometimes I wish I never turned over any rocks in my diet so to speak.

[KMK_Mama]

I have had IC for 17 years. It sucks. I hope you don't have it.

[Deir]

 kmk- mama- I am so sorry you have been suffering with IC for so long. That is just awful. I feel a little better but still not normal. I have no pain- only the feeling like I need to pee all the time. My appointment got cancelled yesterday due to snow (Ugh!) So I go tomorrow. I hope my midwife has something to add. I am starting to really suspect salicylate sensitivity which I may have unwttingly GIVEN to myself due to my weird diet changes. Anyway- I am hope youget some relief at some point and thanks so much for replying. (((((((hug)))))))

[tanyalynn]

Deir-- on inducing salicylate sensitivity... if that's what's going on, you're probably susceptible in a way that many people aren't, but if you've just started to have sals issues (or amines--I don't know if people can be sensitive to amines and not be sensitive to salicylates too, I haven't seen it but I don't have wide experience), then it should be quicker to resolve.  On a restricted diet, you _can_ run low on some nutrients, esp if you were borderline before--but this isn't the Beginner level of food intolerances and nutrition anymore, this is well into the Intermediate level, iykwim.  It's one of those things that it takes a while and some experience to figure out, and again, some people are susceptible to this in a way that most people aren't--really, who's counting milligrams of molybdenum in their diets?  But it's also pretty straightforward to supplement the nutrients for dealing with salicylates and, at least for kids, if they do supps and eat a low sals diet for a month or two, it seems like they start to build up more sals tolerance. 

[MiaFL]

I was diagnosed with IC a number of years ago.  I tried cutting out foods and tried something called Prelief.  After awhile it just kind of went away.  Looking back, I realize I was drinking quite of bit of tea at that time and I think it irritated my bladder so much that cutting out tea for a day or two didn't make a difference, it was after I hadn't had tea for months that it finally got better.  Hopefully it's just something in your bladder (and I bet vinegar would do it) that's causing you to have these symptoms. 

[deditus]

I second the sals and the tea - I had an IC diagnosis at one time and I was drinking A LOT of Snapple peach ice tea then. I had symptoms for several weeks to a few months and then my diet/lifestyle changed and it went away and never came back. I was a teen at the time and I don't really remember what I was eating at the time, but I specifically remember the tea. I am also gluten intolerant, but only figured that out in the last few years.

[Deir]

 Thank you so much!

[Deir]

 So- as I feared- the midwife thinks I have IC. I am not surprised but I ws kind of hoping she'd say,"oh- you have a ovarian cyst that is pushing on your bladder " Or something-- other than IC. Anyway- I am hoping the diet helps. One of the complicating issues is that I had been trying to do a candida diet as well as worry about my lo's sensitivities so I have ALOT of thinking to do about what the h I can eat. I just hope I can keep it together emotionally and mentally. I am under alot of stress feeling like this.

[ikesmom]

I know this sounds dumb to say , but try not to freak out that you "have it" because you might not. You are pregnant and your body is not acting normal and birth can do so many things. I had a pregnancy that made my so called IC go into remission for the most part. I don't have pain 24 hours a day anymore.  Try the candida diet and really try to follow it strict so you can see if it works..no sense in doing it half way and dragging it out longer. I followed JaneS  and the SCD diet and took Ditropan and all the bells and whistles. My advice is don't do what we all do when we think we have something which is go crazy ..I say this with love. Stress makes it worse . Try to eat as natural as possible without going overboard. Nothing acidic or starchy. 

I hope you don't have it..keep us posted!

[Deir]

 I'm not pregnant! (Unless you know something I don't!) Thanks- that made me laugh a little! I have a 10 month old- dear god I HOPE I'm not pg! Anyway- I go to a midwife for gyno care. Here's the issue with following the yeast diet. I had NO symptoms of candida. My dd had mucus in her stools and a rash and the doc surmised that I may have candida (which I passed to her )because of past abx/Pill use. My only complaint in life before this was PMs with slight acne which i had under control with herbs. Yes I know this can be from Candida but I had zero other symptoms. I am very confused as to what the heck is going on with me. Maybe I do have leaky gut etc but between the IC diet, the allergy diet, the Candida diet and the low slaicylates/amines diet- i am overwhelmed and scared to eat. I am pretty bummed right now. I kind of wish I had just taken out dairy, taken probiotics, given them to Nora and called it a day.

[KMK_Mama]

Along with the IC I've had for 17 years, I developed a chronic 24/7 headache 5 years ago. I just went to some specialist last week and she seems to think it's all related. I will let you know what she says when I speak to her.....but she eluded to systemic yeast as well.

[Deir]

Oh honey- that is so awful! I hope you find some answers!