My story/antibiotic ques/would love any advice and help!

[Kate82]

Hey everyone..I am pretty new to the site. This will probably be long but I would appreciate as much advice and help as possible. I got the UTI symptoms (for the first time in my life) in sept or oct. of 2005 and my doc put me on antibiotics but the symptoms returned after a few weeks. She put me on antibiotics again...the symptoms came back after a few weeks again. Then I went to a different doctor who looked at my previous urine samples and said that doc shouldn't have put me on antiobiotics in the first place cause I never had an infection. So she put me on the medicine that makes your pee turn blue (Urised I think)...and that started to really help. But she also sugested I see a urologist because before the UTI symptoms ever started I've been peeing frequently for about 3 years. So I went to a urologist. He catheterized me to get a good urine sample. And WOW after that my symptoms got way worse for a week or two. So I tell that urologist that my symptoms got way worse after the cathiter and he tells me I have IC and switches me to the med that make you pee orange. That one didn't help at all. So I went to a different urologist who took a pee sample..still no infection. Said I have urethral syndrome because its too soon to call it IC. And he took me off the orange pill and put me on a new blue pill (urogesic blue tablets). It started helping me after a few days and then for almost 3 weeks I felt very good (pretty much back to normal). But in the past week and a half my symptoms have come back. Its not HORRIBLE (not like it was right after I got the cathiter thank God!) but it is back to the burning, extreme sensitivity, and random pains in my clit area and urethra. But not in the bladder (thank goodness..I experienced the horrible pressure in my bladder after I had that cathiter and I hope I never experience that again!)

Anyway. I went to my urologist today hoping he'd give me a new medicine to try sinse the urogesic blue has stopped working. He basically said I should see a gyno (why!? my pain is where I pee not in my vagina?) and he said I'm depressed and should see my primary care doc. What the hell. Yea I am depressed because Im in pain! Well I guess I shouldn't have told him ALL of my other symptoms. He must of thought I was complaining about all of them..But I was just wanting to be really informative by telling him my entire body's symptoms because then he'd have a better idea of whats going on with me and maybe something would click. And he'd have a better idea of what could be wrong with me. But instead he must have saw it as I'm just complaining of everything. Well after he brushed me off and said to take antidepressants I started crying and asked if I could have a perscription to antibiotics (even though I don't have an infection) cause my best friends wedding is next week and Im the maid of honor and I can't handle being in pain for that. I don't want to be in pain everytime I sit and walk while helping prepare for the wedding and rehersal dinner and the being in the wedding itself. So he went ahead and perscribed me antibiotics.

Well I am still reluctent to start the antibiotics because the last 2 times I was on them yes they got rid of my symptoms temporarily BUT I got VERY sick about a week afterwards. After the first time I took antibiotics I threw up for 2 days straight..the next time I got really sick and had a horrible cough for almost 2 weeks and bearly got any sleep cause I couldnt stop coughing. So I'm wondering is it worth it to be symptom free for a few weeks but then have to get really sick? Does anyone else get really sick after taking antibiotics??

I am so desperate for advice! This message board is sooo overwhelming. I am reading that these urine tests aren't accurate for finding all bacteria? And its hard to find docs who look for all the kinds of bacteria? This is so unfair why should we have to do all the work in figuring out what to do!

This is the list I showed my urologist (my entire body's symptoms) and thats when he said I need to see my primary care doc and my gyno and I should take antidepressants. blah. My primary care doctor always brushes me off and shrugs her shoulders when I tell her all of my symptoms.




My Symptoms:

1.) tired all the time even though I get enough sleep (I've felt like this for the past 3 yrs)


2.) the back of my legs and my butt start to hurt and have a sensation that I'm putting pressure on them when I sit or lay on them (I've felt this for the past yr)


3.) it feels like my butthole (my butthole higher up in my body) hurts and feels pressure sometimes (for the past 6 months)


4.) my clit gets pains like something is pinching it (started in the past week but I think I've felt it in the past but it would always go away in a day or two)


5.) burning, hurting, and very sensitive on and around my clit and the urethra (the past 3-4 months off and on).


6.) constipation, diareah, bloating, stomache feels acidy/burns. Had these symptoms for a yr or 2 but seems to have gotten much worse in the past 3 or more months.


~Kate

[ICNDonna]

I think a good starting point for you would be to see your primary care physician (if you don't like and trust the one you have, then you may need to find another) and ask for a complete physical. There may be some problems there that can be remedied. Be sure to let your doctor know your symptoms.

The only symptoms you describe that does sound like it could possibly be IC is the feeling like bladder infection and the urethral pain with no infection present. Hopefully you'll get some answers soon so you can begin to feel better.

Sending healing thoughts,
Donna

[sweetangel2080]

Maybe another doctor may be in order- and urge them to get a referral to a urologist - gyno's can be knowledgable about IC - mine diagnosed me and I still don't have a uro.

[Kate82]

I know going to the gyno would be a good idea its just that I felt like the uro brushed me off the last time I went and stopped wanting to help once I brought up everything else thats wrong. I've been to my primary care about all of my symptoms already and she isn't any help (obviously I need to find a new one). She did blood work and my results were normal and that was the extent of what she did. And she guessed that the symptoms with my legs could be inflamation and perscribed me celebrex. But I'm not going to take that stuff when she is just guessing what the problem is.

Donna I thought my symptoms (burning down there) were typical IC symptoms? What makes you think it might not be IC?

Is there a way to prevent getting sick after taking antibiotics? Is that normal to ge sick after taking them?

Kate

[Katrina]

Ya, that uro brushed you off....so try a different one. I suspect you have IC but I also suspect that isn't all that is going on. I also suspect IBS (which is extremely common with IC).

Sor the Wedding...try the diet and calcium suppliments....maybe the adhesive heat pads (they can help more than just pain sysmptoms since they help to relax the pelvic musscles)Also you may want to try Prilosec OTC. (Have fun :) :grouphug: )

I hope that you get a doctor that gives you the help that you need.

Antibiotics can offen help to relieve symptoms even when there is no infection pressent...always ask for a culture.
:grouphug:
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[PlainJane]

Hi,

Sorry you're feeling so miserable. I can really relate to the fatigue and the being brushed off by doctors. I've had urinary symptoms for 2 years now (prior to that I never had a UTI or urinary problems). I went to docs for 2 years before one finally decided to test me for ureaplasma urealyticum. Now I'm in the process of treating that infection and going to get tested to see if something else could be causing my symptoms.

My only suggestion would be go see a chronic fatigue doctor (if that's a really big part of your problem. It is for me) and get tested for mycoplasma infections. No, most docs don't routinely screen for these infections and they don't show up on routine culture tests.

I would rule out everything before you accept a diagnosis of IC. It could very well be IC (I don't know much about IC) but you want to make sure you're not missing something here.

Good luck & hope you feel better soon.

Erica

[icnmgrjill]

You seem to be having some classic pelvic floor dysfunction symptoms... particularly the sensations you've described as well as the muscle tightness in the upper legs, butt, etc. etc. So, it would also be interesting to ask your OB GYN or Urologist to do a pelvic floor assessment. I also struggle with tremendous muscle tightness in my upper legs and toosh which makes it, on occasion, very uncomfortable to sit down!

Remember, pelvic floor spasms can mimic the symptoms of IC and/or yeast and/or vulvodynia. But, a good physical workup as others have suggested, is a good idea to rule out other things as well!

Most IC patients have IBS and, for women, periods of vulvodynia and/or discomfort in the perineum, vulva and surrounding area.

Jill :)

[kjones1]

What is ureaplasma urealyticum? And how do you get tested for mycoplasma?--Thanks--Kelly


Hi,

Sorry you're feeling so miserable. I can really relate to the fatigue and the being brushed off by doctors. I've had urinary symptoms for 2 years now (prior to that I never had a UTI or urinary problems). I went to docs for 2 years before one finally decided to test me for ureaplasma urealyticum. Now I'm in the process of treating that infection and going to get tested to see if something else could be causing my symptoms.

My only suggestion would be go see a chronic fatigue doctor (if that's a really big part of your problem. It is for me) and get tested for mycoplasma infections. No, most docs don't routinely screen for these infections and they don't show up on routine culture tests.

I would rule out everything before you accept a diagnosis of IC. It could very well be IC (I don't know much about IC) but you want to make sure you're not missing something here.

Good luck & hope you feel better soon.

Erica

[PlainJane]

What is ureaplasma urealyticum? And how do you get tested for mycoplasma?--Thanks--Kelly

Ureaplasma urealyticum is a type of mycoplasma infection. It can cause frequency, urgency, nocturia, and incontinence among other symptoms. The bacteria lives in the cell and feeds off it without killing the cell. It can travel anywhere in your body as far as I understand, in your heart and even go to the brain. Some people think it is responsible for infertility, nerve damage, arthritis, among other problems. Apparently there is a great debate about whether ureaplasma actually causes symptoms. Apparently it is so commonly cultured that doctors dismiss it because it doesn't cause symptoms in the majority of people.

What I do know is that I have urinary symptoms for 2 years and I was cultured for ureaplasma urealyticum. I am going in a week to be tested for pretty much every bacteria to see what could be causing my symptoms. I also am going to get tested for the ureaplasma to see if it has cleared up yet after the antibiotic treatment.

Most labs aren't good at culturing mycoplasma though and most docs are very ignorant on the subject esp. urologists (in my experience).

Erica

[kjones1]

PlainJane,

Thanks for all the great info. I am going to check the website out. I was diagnosed with IC on symptoms and mild damage on the cysto but I was thinking about looking into these tests because my IC symptoms started after a skin infection from a wax when I was away in the caribean. Parasites and bugs were something that worried me in the beginning.

Good luck with everything. Keep me posted on how you make out. --KJ

[Kate82]

Jill~ The pressure sensation I have in my legs and butt doesn't feel like its my muscles. It feels like the inner layers of my skin/flesh is what is hurting/feeling pressure. Its hard to explain but I do know what it feels like to have muscle tightness or soreness and what I feel doesn't feel like that.

PlainJane~thank you for that info! When you get a mycoplasma infection test it checks for ureaplasma urealyticum too? My guess is the doc will dismiss it but it can't hurt to atleast ask for the test.
Also...didn't know there were chronic fatigue doctors!?

Kjones~I have always thought about getting a wax..well now I definatley wont! Man that really sucks that that happened to you


Kate

[PlainJane]

PlainJane~thank you for that info! When you get a mycoplasma infection test it checks for ureaplasma urealyticum too? My guess is the doc will dismiss it but it can't hurt to atleast ask for the test.
Also...didn't know there were chronic fatigue doctors!?


I think you have to ask specifically to be tested for ureaplasma urealyticum. Maybe look up some info on google about mycoplasma infections.

Yeah, there are definitely such things as doctors trained specifically in chronic fatigue syndrome. Interesting thing I read yesterday said that people with chronic fatigue syndrome have elevated levels of cortisol but I have low levels of cortisol which makes me think that the bladder infection is causing my fatigue and I don't have chronic fatigue syndrome. That's just my theory though!

Take care,

Erica

[Kate82]

I went to the gyno today and he told me I don't need to get tested for that. I'm going to try to see a new uro listed on this board so hopefully he will be more willing to test for it.

That is interesting you don't have raised cortisol levels. That is really good though..thats a stress hormone right? Definately good to have low levels of that! I have anxiety so I bet my levels are high.

Kate

[PlainJane]

Hi,

Yeah low levels are definitely not good as it causes fatigue (which confuses me because that's the main symptom of chronic fatigue syndrome). Did your urologist give you a reason for not wanting to test for mycoplasma infections? I am assuming that he or she doesn't believe it causes symptoms.

I'm seeing a urogynecologist in the morning. My expectations are VERY low (non existant really) as my last 4 appointments with urologists have been useless.

I hope you can find a doctor who can help you soon.

Erica

[PlainJane]

Ureaplasma urealyticum is a type of mycoplasma infection. It can cause frequency, urgency, nocturia, and incontinence among other symptoms. The bacteria lives in the cell and feeds off it without killing the cell. It can travel anywhere in your body as far as I understand, in your heart and even go to the brain. Some people think it is responsible for infertility, nerve damage, arthritis, among other problems. Apparently there is a great debate about whether ureaplasma actually causes symptoms. Apparently it is so commonly cultured that doctors dismiss it because it doesn't cause symptoms in the majority of people.

What I do know is that I have urinary symptoms for 2 years and I was cultured for ureaplasma urealyticum. I am going in a week to be tested for pretty much every bacteria to see what could be causing my symptoms. I also am going to get tested for the ureaplasma to see if it has cleared up yet after the antibiotic treatment.

Most labs aren't good at culturing mycoplasma though and most docs are very ignorant on the subject esp. urologists (in my experience).

Erica

Is there a reason my post got edited? What is the reason? Just wondering.

Erica

[Kate82]

That is odd it got edited.

Well he basically just said I don't think thats the problem and brought up other stuff (not a shocker). I couldn't really argue sinse I don't know much about any of that but by the next time I go to the uro I will have read up on it.

Oh I would have thought low levels of cortisol would be good..but if you think about it..it does make sense you'd be tired from the lack of it.

I know how you feel about having low expectations with these doctors..we just have to keep trying and keep learning and one of these days we will find our solution.

Good luck,
Kate

[PlainJane]

See the thing I don't understand is what does the doctor have to lose by testing you for it? It makes no sense to me, but then again doctors never did make sense to me.

Erica

[Kate82]

Yea they don't make sense for MANY reasons

[Romans8:28]

:hmm: I'ved been doing some research on mycoplasmas. I recently bought "Diagnostic Bacteriology, a study guide". THIS IS A MICROBIOLOGY TEXT BOOK FOR DOCTORS AND LAB TECHS ETC. COPYRIGHT 2000, PGS. 286-287
Mycoplasma and Ureaplasmas:

M hommis colonizes in the urogenital tracts of many sexually active adults. This organism is an opportunistic pathogen and HAD BEEN ASSOCIATED WITH BV, PID ...,

M. gentialium may cause genital tract infections (nongonococcal urethrits and PID)

Ureaplasma urealyticum colonies in the urogenital track of many men and women. The organism may cause nonchlyamydial, nongonoccal urethrities in men. In women U. urealyticum IS associated with BV and upper genital tract infections.

Some interesting websites:
http://members.aol.com/rgm1/private/nicolson.htm
http://www.immuno-sci-lab.com/html/mycoplasma.html
http://www.immed.org/
http://www.healthatoz/Atoz/ency/mycoplasma_infections.jsp
http://www.gulfwarvets.com/mycoplas.htm

http://www.rain-tree.com/myco.htm
www.cambrex.com

www.immed.org

Since antibiotics help me and are necessary, but make my bladder hurt, understand that I'm not giving any opinion, just what I've found!! :hmm:
Shelly

[Romans8:28]

PS most doctors do not know this stuff or where to test. Untill a few years ago mycoplasmas were nothing but a theory, now we have found ways to test and culture for them!

[glenda]

I'd like to just add that you might be experiencing flu like symptoms with the antibiotics due to a hex. (not sure of the spelling, so I will just abbriviate it and explain) reaction. This reaction will occur in some people who have systemic infections. When you take an antibiotic, the "bugs" start to die off, as they die off they release toxins into the body that produce flu like symptoms in patients. If you don't take the antibiotic for long enough, the infection won't completely clear up, so every time you "begin" an antibiotic again, you will experience these symptoms again.
If the treatment is taken for long enough, these symptoms should disipate somewhere between a few days to a few weeks. This doesn't necessarily mean that the infection is cleared up yet, though. Sometimes an antibiotic needs to be taken for much longer to clear up an infection completely. (THIS IS ONLY IN SOME CASES). It is possible that you could be experiencing something else, for example, an allergic reaction ect..
I am not a medical professional, this is only some of what I have read about.

[emilyrose197377]

I am on antibotics and it did not cause me to get sick because I am the uti queen and also have ic and burning is a symptom I have a bladder spasms and pelvic pain and swelling in my lower abdomen. It does sound like you have IC. I would find another dr. that will listen and run some tests to find what is going. Good luck to you. I would ask for a cysto and hydro or a the pst.