UTI symptoms for 6 years, but no UTI.

Posted , 6 users are following.

i don't usually like posting on forums, since i'm the type of person to always firstly say, 'see a doctor'; but i realize that isn't always the top option. 

since i was 12 years old, i've had symptoms of a severe UTI but with no UTI. the last 'UTI' i had occurred when i was 13. i'm 18 now, have had countless test run, been on many medications, but nothing works to relieve the pain.

day in and day out, i am suffering. i can't go out of the house without being in fear of the pain, i can't have sex without being in near-excruciating pain, nor can i simply use the bathroom without suffering for minutes or sometimes hours afterwards. i bleed between periods (albeit lightly), have thick green, yellow and white discharge, and have frequent abdominal and lower back pain, which feels like cramps (though sometimes i just attribute this to my horrid back, which has a history of pain of its own). several gynocologists have also told me my cervix bleeds easily, and i sometimes bleed after sex. i have only ever been with one partner since i was 13 and am still with him. i've been tested for many STD's but nothing comes positive. i drink only water, can't eat a variety of food due to a severely sensitive stomach, so most 'irritants' are already off the menu. i only drink coffee in the morning, of which i have ruled out a factor in any of this, since i had stopped drinking coffee for an entire year and a half just to see if it would help; which it didn't. i'm also far beyond the point of 'not using soap when showering' and 'wearing light clothing'. 

i have no idea what this could be, nor, it seems, do doctors. i have a maternal family history of ovarian cysts and cancer but have neither; or, at least i don't think i have cancer, because doctors keep telling me i'm 'too young to have tests for it run'. i've been to many specialists and many gynocologists but none have noticed anything 'abnormal'. it's just about making me lose my mind and i don't have anywhere else to turn. my mom doesn't seem to believe me anymore either. this pain basically consumes my life. i wouldn't be surprised if it was the main factor in my depression and anxiety. i just want to live normally.

 

i go to the gynocologist in two weeks for a regular checkup but i'll be bringing up two things i think this could be; which are interstitial cystitis and endometrial hyperplasia. both of which i don't remember if i've been tested for. the uncertainty of the results themselves is more worrying than any test they could try. at this point i don't care, i just don't want to be in pain. i want them to find SOMETHING, because it has to be something.

has anyone else had a similar experience so young? in the back of my mind is always the possibility of cancer, but nobody seems to take me seriously, which only adds to the frustration. thanks in advance. 

1 like, 10 replies

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10 Replies

  • Posted

    also: i forgot to mention that i've been on birth control since 13 to control acne and severe menstrual cramps. up until 9 or so months ago i was on a generic-brand low-estrogen pill, unfortunately i forget the name of it. the one i'm on now is called reclipsen. when i am not on the pill, my cramps put me in the hospital. apparently that is a symptom of something called endometriosis which i discovered only today, i'll be bringing that up to the doctor as well.

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  • Posted

    Wow, it sounds like you are dealing with a lot at such a  young age!  Are u located in the United States?  I would suggest seeing a urogynecologist if you can.  They are even more specialized than a gynecologist and at this point it sounds like you could benefit from seeing one.  Your issues kind of sound two fold to me as you have both bladder pain and gynecological problems going on.  They could be related but that's why I think it may be helpful to see a urogyn who can look at the big picture for you.  As for cancer, I would think that's pretty rare but they should not discount that given all your symptoms simply because of your age.  People of all ages get cancer (although most likely there is probably another explanation for your symptoms).  I know nothing about endo but I do know a lot about IC and UTI symptoms in the absence of an infection is exactly what IC feels like.  Until you can get in to see a urogyn I would suggest strict self care including taking all irritants out of your diet, including coffee (sorry).  Even a little bit of coffee isn't doing you an favors as the caffeine and the acidity is going to affect your already troubled system.  

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    • Posted

      i'll mention that if the doctor doesn't, thank you. and yes i do live in the united states.

      i really hate the fact there's no 'edit' option once you make a post. i also had a second question that's been bothering me for about a month but completely forgot to add.

      tucked away beneath the outer labia and just near / slightly above the clitoris, i've noticed two small, roughly peanut-sized, squishy, and painless lumps. i can only find them if i feel around, as they seem to almost slip away, moving back and forth freely. at first i thought they were some sort of glands, but can find absolutely NOTHING on glands in that area of the vulva. the closest i could come up with is that they're a part of the clitoris. they also don't feel like cysts, and they're exactly the same size on both sides in exactly the same location, so my fear of them being tumors is kind of low. any ideas on what those might be? i've gone through countless pictures and forums and even those depicting deep anatomy dissections but can't find anything similar.

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  • Posted

    Aww you poor thing you, surley the thick green, yellow and white discharge on its own needs investigation.

    When i was on the pill i was always having symptoms of UTI ,  As soon as i came off the pill and became pregnant it all disappeared so clearly then a hormonal thing. Im not suggesting you get pregnant but could it be the pilll thats causing your problems since you have been on this for quite a while now.

    Hope the gynocologist can sort you out, you shouldnt be suffering like this.  

    Sue x

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    • Posted

      the discharge has been tested by several different doctors, but nothing wrong was found about it, which i find very hard to believe. i've always had thick discharge admittedly, but the shift in colors is not normal. 

      & i thought it may be the pill as well, but this had been going on longer than i've been on it. i don't know if it's worth trying to go off birth control due to the legitimate hospital-inducing cramps my periods give me. the only pain medication that somewhat alleviates cramps once they're at that stage are intravenous-induced. the birth control also helps significantly reduce the widespread and painful acne i'm prone to.

      thank you, and i hope she does as well. or at least leads me to some sort of doctor who can.

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  • Posted

    HI Xalatoh  I have Simpthey for you but try getting the Dr's to check your Renal , Hormones ,FSH ,LH, Testosterone,E2 and all THyroid It pays to know other areas . Just a though as I have Klinefelters syndrome  47XXY  And women can get it too so For whats it's worth you got nothing to loose  

    good luck david49122

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    • Posted

      i'll be sure to, thank you. nearly the entirety of my mother's side of the family, including her brothers, do have thyroid issues. i've been checked for these sorts of things in the past and have been found normal, but perhaps there's greater measures in testing that can be taken. 

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  • Posted

    I have Endometriosis and have experienced this same issue my whole life...def be tested for it and anything else ur concerned of...u are in control of what ur dr shoukd do not the other way around if they dont want to test u like u ask then get a new opinion n new dr..
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  • Posted

    Girl I have the same exact problem, I have had a ute sypthom since I got my first period which was when I was 13, I'm not 18 going on 19 and I have had this problem for 6 years, it's everyday the pain and the burning, the only thing that helps me is water. I have had ultrasounds and procedures and pee tests and everything always comes back negative. so I'm at lost as well. I know you posted this awhile ago but I'm curious if you ever found an answer . 

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    • Posted

      in recent months, it's been better. i'm not doing anything differently in my diet or any other routine, but i don't feel the burning as frequently or intensely (ie. i don't sit with a heating pad between my legs toughing through a fever and pain beyond imagining every night). i've even been able to be more frequently intimate with my partner with little repercussion on the mystery pain's end, which was once totally out of the question.

      i have no idea if it will return in the force it once was at, but for now, i suspect it was due to urinary reflux. it is very common in my family and they have all outgrown it. hoping that was the case.  

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