SunsetParadise49 Posted December 19, 2006 Report Share Posted December 19, 2006 For a little over a year now, I've been getting urinary tract infections. I get 1-2 a month, and once in a while I won't have one for a while....but that doesn't happen too often. I finally saw a urologist last Thursday. He is starting to think that they really were not uti's after all, but something else. Sometimes I will have blood in my urine, but no infection.....no kidney stones showed up in the stone study test (ct scan). Does this sound like anything any of you have gone through? I doubt that this problem I've been having is related to Dysautonomia but I thought I'd post anyway.(One possibility that the urologist mentioned are pelvic spasms.)Thanks,Gwendolyn Quote Link to comment Share on other sites More sharing options...
masumeh Posted December 19, 2006 Report Share Posted December 19, 2006 I don't have the problem you described. I do get UTIs during pregnancy, and that has caused some premature labor, etc. But, after the first one, I never could detect it, it's like asymptomatic (well, you know, when you're pregnant you pee so many times a day anyways). I hope you find an answer. If you are on florinef (I just read their warnings etc. on their site, so forgive me if I keep bringing this up), it can promote and prolong infections of all sorts.You could try an herbal remedy that boosts the immune system. The one I know of and trust is called "Black Seed" and it's availible via amazingherbs.com. The actually seeds, fresh, taste really strong and nasty, but if you chew and swallow 7 a day, it really fends off infections and boosts overall energy. Also, a UTI infection natural remedy that doctors endorse is lots and lots of cranberry juice. In nursing school, they even told us that they clean some machine parts (some part of the kidney dialasis machine, I don't recall exactly) with cranbery juice and that it does the same cleaning effect inside the body when taken orally just like a regular drink. Quote Link to comment Share on other sites More sharing options...
nikigrl8883 Posted December 19, 2006 Report Share Posted December 19, 2006 yes i had the same exact problem for 3 years too! i had to go to a urolist as well and had a cystoscophy that turned out normal but i was having blood in urine too and some type of infection but when the uroligst look at my culture reports he found that i had normal bacteria even though i had blood in urine.... i dont know to this day why this happened...i had pain so bad i couldnt even work at the time i was always on antibiotics Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 19, 2006 Report Share Posted December 19, 2006 Years ago, I had something similiar. It was so painful. I really feel for you. I always felt like I had to go, but then nothing happened when I tried to urinate. In retrospect, I think I had a condition called interstitial cystitis. Google it and check it out. I had recurrent horrible UTI's. Sometimes, I tested positive and others I didn't. A cystoscopy showed that my bladder was very red and inflamed. It lasted several painful years. Yes, I think it is related to the autonomic nervous system. I've met many with autonomic problems that also deal with this. Perhaps, we are not properly emptying our bladders due to a bit of neuropathy and subsequent chronic inflammation occurs? Any other theories?I hope you find relief.Hugs-julie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 19, 2006 Report Share Posted December 19, 2006 My sister with POTS had this going on for months. Then, mysteriously as it started, it went away. I don't know what the diagnosis/cause was.Katherine Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted December 19, 2006 Report Share Posted December 19, 2006 I had recurrent infections (~ 20 in one year). Sometimes I tested positive, sometimes not. It almost always happened 2-3 days after having sex. I took a preventitive antiobiotic (Macrobid) right before or after sex. This helped. Turned out my hymen was still somewhat attached and was catching bacteria up there. After having my first child, I was cured!! She ripped it the rest of the way I suppose. LOL.Mine was not POTS related. Could yours be sex related? Quote Link to comment Share on other sites More sharing options...
masumeh Posted December 19, 2006 Report Share Posted December 19, 2006 I just remembered that my friend once told me a similar story. She doesn't have POTS, but she has IBS and when it started for her, she had recurrent UTIs and blood in her urine, the scopy thing revealed inflamation in her bladdar and nothing else. She had some bad reaction to the antibiotic, but it eventually went away (I think as her IBS calmed down). Quote Link to comment Share on other sites More sharing options...
kmpower Posted December 19, 2006 Report Share Posted December 19, 2006 In my college days, I had lots and lots of bladder infections. In fact, that is when I figured out that the best that antibiotics could do was to kill bugs, but they didn't heal the tissue. I started to research natural healing and finally started taking better care of my urinary tract -- more water, less coffee, lots of herbs and vitamins and healthy food.There are great books on natural therapies for cystitis. Read some and figure out for yourself what you might be doing wrong. Sometimes hygiene after a BM is poor. Sometimes sexual relations on a full bladder irritates the urethra or lets bacteria in. There are tricks to minimize infections.As to the blood, I can think of two reasons which applied to me, decades before my orthostatic problems. One is that after so many infections, the bladder lining is a little more scarred and splits with little tears easily when infected. Yes, it hurt more when it happened but it would heal quickly. The more important one for me in the last few episodes I had before I really learned all my personal tricks (vit A, chlorophyll. water and more), was this. I reasoned that the bleeding which would persist when there was no infection was like a wound that was slow to heal. I would take vit C, zinc, protein, and products to heal the lining like any wound. I would also lie down a lot (even if I felt great) just to reduce pressure downward on the bladder. And I would keep myself from getting constipated, also to keep pressure down. I would slantboard sometimes. It always worked.I hope this wasn't too long an answer. Every bladder problem is different. I cannot say how much POTS is associated with yours, but since it is all one person it has to be connected.I hope you can figure them out. All of us who have had UTIs know the misery of them.OLL Quote Link to comment Share on other sites More sharing options...
futurehope Posted December 19, 2006 Report Share Posted December 19, 2006 Sounds like what I have. It is called interstitial cystitis. There is a website you might want to investigate:Interstitial Cystitis HandbookOnly certain urologists are well-versed in this. You might be able to find a urologist on the website. PM me if you have any questions.Also, some people have spasms down there and it can be caused by "pelvic floor dysfunction". I'm not super familiar with that, but there are urologists who can diagnose and help you with that. The website might refer to it as PFD. Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted December 20, 2006 Author Report Share Posted December 20, 2006 Thank you SO much everyone! Someone from another site I belong to also mentioned the CI possibilty....when I researched it, I did have many of the symptoms.Also, to whoever mentioned IBS, my family doctor thinks that I have IBS but I need my GI doctor to confirm the diagnosis...that will be sometime in January.I have tried taking high doses of Cranberry pills but they have not helped what so ever. Quote Link to comment Share on other sites More sharing options...
futurehope Posted December 20, 2006 Report Share Posted December 20, 2006 If you indeed have IC, then cranberry juice may very well make you feel worse. Most of us on the IC forum avoid it, though that is the usual way for "normal" people to avoid bladder infections. My urologist did recommend cranberry pills. Quote Link to comment Share on other sites More sharing options...
Ling Posted December 21, 2006 Report Share Posted December 21, 2006 I have battled with my Bladder since a small child. In my 20 the infection started getting worst and more frequent. I have had my bladder pipe stretched twice. I have been on chronic antibiotics and hosptilized. My body stopped after I was hosptilized last year. I have not had an infection since. I have a few rules that I live by to avoid infections.Showers try to avoid baths.No tight fitting pants.White soap and toilet paper.Only cotton underwear.Wipe front to back if you a lady of course.Empty your bladder at least once every hour or maximum every 2 hours. Don?t hold it in.Drink plenty water. Empty your bladder directly after intercourse.Using condoms helps allot for chronic bladder infections. The number one problem. NO BUBBLE BATHS. I hope I have mentioned them all for you. Good luck I know how horrible this can be.I have gone for all the test and I know that my bladder has a growth and does not empty normally. My body says I am finished but I have seen with my own eyes my bladder hardly empties. Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted January 20, 2007 Author Report Share Posted January 20, 2007 Hi Everyone,I saw my urologist again yesterday. I got my ultrasound results back of my kidneys and they are fine. He asked me if I take Cranberry pills and told him I do, but not right now because they were worthless. I added that I heard that every Cranberry pill is different and what does he reccomend. He gave me information on a site called Theralogix. (http://www.theralogix.com/index.shtml) I just ordered some (you can only order through the company as their products are not sold in stores) and they are supposed to be very helpful. I hope it works!If I do have a "flare up" I have to urinate in the cups they gave me, get it to them asap or the hospital for when the office is closed. They will culture it and we will go from there. I haven't had a flare up for about a month witch does happen sometimes but hopefully when I do get the cranberry pills I won't ever have another one.~Gwendolyn Quote Link to comment Share on other sites More sharing options...
runningshoe Posted January 23, 2007 Report Share Posted January 23, 2007 HI,Ouch this post is bring back baaaadd memories. I had blood in my urine when I was in my early twenties. A couple of years later I was hit with IC. I had the bladder biopsy and all. It was a daily problem for several years. When I started having kids things got a lot better. My dr thought hormones played a role. I still have occasional flare ups but have learned that they will pass. You will never see my wearing tight pants though because that is sure to bring it on.! So my question is could IC and POTS be related. I was surprised to see how many people have responded. How do we get to the bottom of this? Quote Link to comment Share on other sites More sharing options...
JAQUIROUIN Posted January 23, 2007 Report Share Posted January 23, 2007 Yes, I had been the same problem. An my dr. never said me Why?. I think the same. That its for the POTS. have a nice day? Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 25, 2007 Report Share Posted January 25, 2007 I've had microscopic blood in my urine for 27 years. it is positive for blood on the dipsticks 100% of the time. I have had problems off and on with interstitial cystitis. But i think they just assume it's idiopathic.I have lots of dysuria and frequency and void very tiny amounts, unless I'm having surges. I do have a very stenosed urethra, which doesn't help. I get it dilated periodically, but it's so painful, I put it off as long as possible. There's also a real condition called "honeymoon cystitis" mentioned earlier. because female urethras are so short, it's much easier for bacteria to enter the bladder. It's a good idea to pee just before and especially after sex, whether you have symptoms or not. This is good for every woman.Anyway, i just go in periodically to make sure nothing more is going on and just deal with it otherwise. I just always tell anyone doing a dip, there's going to be blood.It is good to see a urologist and get things ruled out, however. I have only had one actual infection in my whole life. No mistaking that, I was peeing straight blood....good luck sweetie... Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted January 26, 2007 Author Report Share Posted January 26, 2007 I just got the TheraCran pills in the mail today, so I will start taking them tonight. Hopefully they will make a huge difference! Thanks for all of your input everyone! Quote Link to comment Share on other sites More sharing options...
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