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I responded with 7+, but I've actually lost count. That was before I found out I am allergic to sulfites. Since then I haven't had any, and that's been 20 years now. Thank goodness!

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When I was a little girl, I had chronic UTI's. I would be on the hopsital for weeks at a time. They had to put me on prophalatic antibiotics and they found the I had a double collection system & something didn't develop correctly on my stomach.

I grew out of them when I was around 6 and have only had sporadic ones.

It always seemed to be a freak thing bit when I saw a geneticist a month ago he took that into consideration for diagnosing EDS.

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Yes, actually finding the sulfite allergy was just the beginning of what has turned out to be multiple food allergies. I used to drink wine and had horrible UTIs afterwards so that's how I finally figured it out, after a google marathon of course. Sulfites and I don't get along AT ALL!

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I wonder why so many of us struggle with UTI's? I get them all the time. I usually don't even know it, because my only symptom is lower abdominal pain, which I usually attribute to GI issues, but almost every time I give a urine sample at the dr's or ER they tell me I have a bladder infection.

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I have probably had hundreds of UTIs... First one I recall- I was 5 years old and got really sick and had to be hospitalized. Almost every time I am tested for one, I have one.

According to my urologist, it's a combo of my connective tissue disease and autonomic issues. I guess my bladder is 50% larger- i.e. stretched out from chronic urinary retention. Often I have no urge to go, or I have an urge but TRY to go and can't (so annoying- that's autonomic I guess) and since Dec. I've struggled off and with bouts of urine leaking or full incontinence. When I have had full loss of bladder control I have no urge to go at all- but look down when the signs are evident and realize that I've wet myself. This has been one of the hardest things for me- emotionally- throughout the last few months.

Now it's gotten so bad that I'm going to have to start catherizing myself at least 4x a day. The theory is that my bladder is so stretched out that it never gets fully emptied, therefore old, old urine remains in my bladder and causes these chronic infections. So I need the constant catheter to make sure my bladder is fully emptied.

One issue I have with this- haven't started doing it yet- supposed to be next week- I also have an autoimmune disease, which has attacked and destroyed my ability to have a fever- so infections are dangerous. I've had catheters countless times in the hospital over the years- obviously given my professionals- and have gotten a UTI or bladder infection from every catheter ever inserted. So I am kind of afraid that especially doing it myself, at home, I will be having constant infections, which in turn is going to kick my autoimmune issues into its psycho overdrive... And because I don't get fevers to kill it....??????? Even the urologist said there were no good options for me and he doesn't even know WHAT he would do in my shoes.... Sigh.. I don't know. It seems like no matter what, I have no option that will clearly take care of the problem. Ugh. Advice??????

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On jen I feel for you. I really don't have an answer. I know- and I really only know what my mom told me about when I was little- is that my bladder didn't empty all the way either. I had to take a med to help it along, it was something like Detrol? Has your dr given you a med for it?

Also have you tried depends on the depends pads for when you do have a problem? It'd keep your clothes clean.

I also took antibiotics consistently for a while in hopes of stopping them before the start

I do hope you can find an easier solution than a catheter.

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Bananas-

Just the THOUGHT of doing the catheters gives me anxiety. Ugh. I do use Depends and while I don't like it, it certainly makes life easier. I keep thinking there HAS to be a better way- but the combination of autonomic, autoimmune and connective tissue issues seem to be a disastrous combo for the bladder. I'm just not sure what the right answer or solution is. It almost seems as if the retention (although not comfy and can even get painful) and occasional incontinence with "frequent" infections would be better than using a catheter 4x a day and ensuring infections. Urologist even said I would most likely always have an infection using daily catheters because I'm so prone.. Especially with my extremely aggressive autoimmune issues and no fevers.,,

Sorry you've struggled your whole life too. Sounds like we were about the same age. It's just NO fun.

Jen

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Jen whatever you do, please be careful. I was a cna while I was going to school for nursing. There was a man there with a catheter who got an infection that no one knew about. I was the one who found him in septic shock...not pretty. And I'm not trying to gross anyone out here but when we took out his catheter, it was followed by a stream of blood that we couldn't get to stop. Really opened my eyes up to the negative aspects of catheters.

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Jen,

HUGS ... I'd be anxious about using caths too. FWIW. I was using depends for a little while before I discovered AZO. I used several boxes of azo with probiotics in a row to eliminate my constant uti symptoms of leaking, inability to urinate, painful urination, etc ... I have no idea if it would work for you but thought it may be worth a try.

I've found AZO with probiotics help me everytime but I need these about once a week or more often if I'm eating food that are high oxalate. I have a history of oxalate problems including kidney stones.

I don't know if this would help but some of us with oxalate problems are using B6 + magnesium daily and it seems to help. I'm currently using 1 Solgar B6 250 mg and 1 twice a day - Doctor's best 100 chelated magnesium.

tc .. d

ALSO, I found out the hard way that I was sensitive to depends, etc and could only use organic pads.

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Jen,

My friend's mother just had a procedure done where they placed a temporary pump to empty the bladder. She had already been catheterizing herself. He told her if it worked within a week, he would place the device permanently. Unfortunately in her case, it did not work. But I just wondered if maybe it was anything your doctor has mentioned?

I really feel for you. Bladder problems are just awful. Been there.

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Loads of people on here have AI disease. People with innately inadequate immune sytems tend to develop AI diseases (in combination with environmental factors of course). I have def noticed many women on dys forums having urinary tract issues.

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Jen...catheterizing can actually introduce bacteria into your urethra and bladder. There are smooth muscle relaxants that can help with this, and bladder spasms, as well. I would talk with you doctor about other options. Sorry this is such a problem for you. I use cranberry capsules on occasion and vitamin C. I have had frank blood in my urine before years ago, some incontinence and many infections before knowing I had dysautonomia; now I know why!! I always had pressure down there, and just made sure to drink acidic drinks like lemonade, but then I ended up with gastritis, so you have to find a balance. Ugh...prayers for you!!

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Thank you all for your advice. I have decided that with all the problems that catheters could cause I'm not going in that direction. Especially with my aggressive autoimmune issues. I almost always have some kind of bladder or UTI infection whenever I'm tested- I'm pretty certain daily catherizatiom and taking the chance of introducing more bacteria would only cause more issues. Like I said, even the doctor sad he wasn't sure what he would do... And admitted that there was a high risk of infection to go that route.

So, I guess I will just do more research and many of you brought up good options to explore. I think my issues with my bladder are really hard for me to handle psycholgically. And I always hear, "don't feel that way, it's not your fault, you can't control it" and of course I KNOW that... It still seems like one more thing "taken away" from me because of these poorly understood conditions. Mostly, I do have to wear Depends but I don't WANT to. I just want to get fixed, like the rest if us. I'm in a mood, sorry :( I really do appreciate the feedback!!!

Jem

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