Aa
My symptoms baffle me and my Dr, HELP!
Hello everyone! I am brand new to this site, so my apologies if I'm awful at this! I'm just at my wits end getting the run around from doctors, have been for years, just to have nothing work in their treatments. I guess I will start off with the basics. I am a young woman (closing in on 23), I have a four year old son whom I delivered naturally, with very minor complications (nothing I feel as relative). Before and during my pregnancy, I felt amazing. As amazing as any 18 year old should feel, I was of healthy weight and height, been strictly vegetarian since I was 10 years old and was always very energetic. At that point, I'd only been diagnosed with a benign heart murmur, and asthma (outgrown) as well as depression and anxiety since I was a victim of sexual abuse, for years, as a young child.
Right now, this is how I feel, and this is what's going on:
1) I am in non stop, constant, terrible burning pain in the mid (flank) back.
2) I am nauseous and vomiting, daily.
3) Unbearable migraines
4) I feel weak, and dizzy, and like I've been hit by a truck.
5) My feet constantly swell, rarely my hands will too.
6) I'm under 100lbs, for the first time in my life. I'm typically 15-20lbs more.
7) I often run fevers and am typically cold.
As for my urinary problems:
Cloudy urine with foul kind of salty smell, painful urination, mainly towards end of stream, hurts awhile after expelling all urine.
I went 15 min ago, and it was odd.. It looked almost like large flakes of skin, and white round type things on them. I poked one of the round things, and it started flopping around. Okay, this is the part that's really hard to describe (my mom said it looked like if you put two batteries together) and it burned more than normal. No vag. discharge discovered.
The big problem is that all Drs argue on what's going on for 3 years. Started as milder symptoms,were treated as a UTI. But, anytime they treat it like a UTI, the problems only lesson, not disappear. I've been told by multiple doctors the infection has enetered the kidneys, gave me a cocktail of antibiotics and it helped everything, then after awhile, the flank pain stayed permanantly. My primary care doctor now thinks this ongoing pain isn't related to any sort of UTI. Even though I have UTI symp now, he won't treat it. I ended up going to the ER, and they said I did have a UTI with pylonephritis, gave me a shot of antibiotics and wrote out a prescription for Ciprofloxacin. In the past, these infections have been resistent to Cipro from time to time. I followed up with my PCP Doc, and he told me not to fill the prescription, to wait for the UA-Culture and go from there. He called in Amoxicillin when it did come in, which have done as much good as banging my head into a wall (sorry, bad joke).
My doctor thinks my symptoms aren't typical of someone with back problems, or typical of someone with kidney infections. I've been seeing him for about a year now, and before then I had no PCP (Primary Care Physician) established, so I was in the hands of the local walk-in and hospital (if ab solutely necessary) So he pretty much said "keep your care with me, and me only" (which put me at rest-for awhile) he put me on a pain treatment plan (10mg Oxycodone as needed) and pretty much just waited for everything to miraculously disappear, his words, not mine. He expected random improvement. Now, when I think I have a UTI, he will do a UA and say I'm fine. I'm far from fine. I'm so sick I need constant help from the people in my life, and I've always hated feeling precarious, and no one wants to be a burdon.
He sent me to a urologist, who looked at my CT results, found no kidney stones and sent me to an infectious disease doctor, who literally just did an AID's test, and that was that.
Not sure if it's related, but I had other problems after my son was born. I was having terrible pelvic cramping, excessive bleeding, it went on for months and months and finally my OBGYN did a laparaoscopy, hysteroscopy, and D&C. They found the lining of my uterus was extremely thick, and was extremely hard to scrape off, and my body was shedding properly. During the D&C they found a bunch of Polyps, which all came back as benign. Since then, haven't had many problems. My OBGYN did say, she thinks I could have endometriosis that she just couldn't find at that time with being only 19 then, and she said the thickness of my uterus and polyps would likely come back. She said I may need a repeat surgery in another 2-3 years from then (July will make four years since surgery). After the surgery, from the catheter, I got my first UTI which went untreated for awhile (I'd never had one beofre that) so it went into the kidneys when I finally got treated.
So I have NO Idea if this is at all related to what's happening now, the only thing that I know is that a girl my age should not already feel 90. I know somethings wrong, my body is telling me in every way it can that something is wrong. Of course it doesn't help than in the last 6 months I have had an industrial accident, and was pretty banged up from a car accident last month. Just my luck! (Another bad joke)
Here is my current list of medications.
Elenest Birth Control Pill (For menstraul suppression)
Buproprion (Anxiety/Depression)
Sumatriptan (Migraines)
Ondansetron Dissolvable Tabs (Nausea/Vomiting)
And various OTC medications.
I had been on Oxycodone until recent, because apparently there was a false-positive in my UA for Methodone.
So, unfortunately I have to suffer in this pain. Hoping that he can do confirmatory tests to prove I have never taken any knowingly unprescribed medication, other than OTC and twice family members shared theirs when I was unaware they were RX-ONLY, just as an attempt to help me. My biggest fear with this situation is that he will not take me seriously anymore. I have such an incredibly hard time finding a doctor who will anymore. Being a small young woman with odd hair and odd clothes and tattoos apparently means I am profiled as a drug abuser, or looking for attention, I'm not really sure. I did cry when I got home that day. This generation is full of art, love, and expression (or so I thought). The pain medicine is not my concern however, being treated accordingly, and getting better is my top priority. I don't know how to prove my doctor of that, because I feel like I have done so already (by seeing him once a week for a year). I am serious about this. I want to feel like the old me! I want the energy my friends have. I wish I could still hike all day, or spend hours with a paintbrush in my hand and keep concentrated. The medicine was a mask, it was like the bandage you put on a cut until it's done bleeding. Granted, I don't feel like I'm done "Bleeding" yet, I just really don't feel like the physical therapy they're making me do next will help stop the "bleeding" either. A new approach could save me, save everything, and then I could take the meds (even the ones for nausea, and migraines) and hand them BACK to the pharmacist and tell her that I don't need them anymore. That's the goal.
I am seriously at my wits end, I'm about to give up going to the doctors all together because all it's done is cost a fortune in co-pays, and give me no relief beyond temporary. I haven't felt normal. or even "OK" in years. I just want to be me again, and be the best Mother, Fiance, Daughter (my parents really need me right now), and friend. I want my art business back, I want it all. Please help, or please give some suggestions that I can print out and give to my doctor at my next appointment.
Thank you guys, so much! I know this was a terribly written post, but there's just been SO MUCH I don't want to leave anything out. I currently feel like someone has been mistaking my flank as a giant gong, and repeatedly pounding on it out of confusion.
Thanks for your time, and God Bless!
-Hannah Conda
Right now, this is how I feel, and this is what's going on:
1) I am in non stop, constant, terrible burning pain in the mid (flank) back.
2) I am nauseous and vomiting, daily.
3) Unbearable migraines
4) I feel weak, and dizzy, and like I've been hit by a truck.
5) My feet constantly swell, rarely my hands will too.
6) I'm under 100lbs, for the first time in my life. I'm typically 15-20lbs more.
7) I often run fevers and am typically cold.
As for my urinary problems:
Cloudy urine with foul kind of salty smell, painful urination, mainly towards end of stream, hurts awhile after expelling all urine.
I went 15 min ago, and it was odd.. It looked almost like large flakes of skin, and white round type things on them. I poked one of the round things, and it started flopping around. Okay, this is the part that's really hard to describe (my mom said it looked like if you put two batteries together) and it burned more than normal. No vag. discharge discovered.
The big problem is that all Drs argue on what's going on for 3 years. Started as milder symptoms,were treated as a UTI. But, anytime they treat it like a UTI, the problems only lesson, not disappear. I've been told by multiple doctors the infection has enetered the kidneys, gave me a cocktail of antibiotics and it helped everything, then after awhile, the flank pain stayed permanantly. My primary care doctor now thinks this ongoing pain isn't related to any sort of UTI. Even though I have UTI symp now, he won't treat it. I ended up going to the ER, and they said I did have a UTI with pylonephritis, gave me a shot of antibiotics and wrote out a prescription for Ciprofloxacin. In the past, these infections have been resistent to Cipro from time to time. I followed up with my PCP Doc, and he told me not to fill the prescription, to wait for the UA-Culture and go from there. He called in Amoxicillin when it did come in, which have done as much good as banging my head into a wall (sorry, bad joke).
My doctor thinks my symptoms aren't typical of someone with back problems, or typical of someone with kidney infections. I've been seeing him for about a year now, and before then I had no PCP (Primary Care Physician) established, so I was in the hands of the local walk-in and hospital (if ab solutely necessary) So he pretty much said "keep your care with me, and me only" (which put me at rest-for awhile) he put me on a pain treatment plan (10mg Oxycodone as needed) and pretty much just waited for everything to miraculously disappear, his words, not mine. He expected random improvement. Now, when I think I have a UTI, he will do a UA and say I'm fine. I'm far from fine. I'm so sick I need constant help from the people in my life, and I've always hated feeling precarious, and no one wants to be a burdon.
He sent me to a urologist, who looked at my CT results, found no kidney stones and sent me to an infectious disease doctor, who literally just did an AID's test, and that was that.
Not sure if it's related, but I had other problems after my son was born. I was having terrible pelvic cramping, excessive bleeding, it went on for months and months and finally my OBGYN did a laparaoscopy, hysteroscopy, and D&C. They found the lining of my uterus was extremely thick, and was extremely hard to scrape off, and my body was shedding properly. During the D&C they found a bunch of Polyps, which all came back as benign. Since then, haven't had many problems. My OBGYN did say, she thinks I could have endometriosis that she just couldn't find at that time with being only 19 then, and she said the thickness of my uterus and polyps would likely come back. She said I may need a repeat surgery in another 2-3 years from then (July will make four years since surgery). After the surgery, from the catheter, I got my first UTI which went untreated for awhile (I'd never had one beofre that) so it went into the kidneys when I finally got treated.
So I have NO Idea if this is at all related to what's happening now, the only thing that I know is that a girl my age should not already feel 90. I know somethings wrong, my body is telling me in every way it can that something is wrong. Of course it doesn't help than in the last 6 months I have had an industrial accident, and was pretty banged up from a car accident last month. Just my luck! (Another bad joke)
Here is my current list of medications.
Elenest Birth Control Pill (For menstraul suppression)
Buproprion (Anxiety/Depression)
Sumatriptan (Migraines)
Ondansetron Dissolvable Tabs (Nausea/Vomiting)
And various OTC medications.
I had been on Oxycodone until recent, because apparently there was a false-positive in my UA for Methodone.
So, unfortunately I have to suffer in this pain. Hoping that he can do confirmatory tests to prove I have never taken any knowingly unprescribed medication, other than OTC and twice family members shared theirs when I was unaware they were RX-ONLY, just as an attempt to help me. My biggest fear with this situation is that he will not take me seriously anymore. I have such an incredibly hard time finding a doctor who will anymore. Being a small young woman with odd hair and odd clothes and tattoos apparently means I am profiled as a drug abuser, or looking for attention, I'm not really sure. I did cry when I got home that day. This generation is full of art, love, and expression (or so I thought). The pain medicine is not my concern however, being treated accordingly, and getting better is my top priority. I don't know how to prove my doctor of that, because I feel like I have done so already (by seeing him once a week for a year). I am serious about this. I want to feel like the old me! I want the energy my friends have. I wish I could still hike all day, or spend hours with a paintbrush in my hand and keep concentrated. The medicine was a mask, it was like the bandage you put on a cut until it's done bleeding. Granted, I don't feel like I'm done "Bleeding" yet, I just really don't feel like the physical therapy they're making me do next will help stop the "bleeding" either. A new approach could save me, save everything, and then I could take the meds (even the ones for nausea, and migraines) and hand them BACK to the pharmacist and tell her that I don't need them anymore. That's the goal.
I am seriously at my wits end, I'm about to give up going to the doctors all together because all it's done is cost a fortune in co-pays, and give me no relief beyond temporary. I haven't felt normal. or even "OK" in years. I just want to be me again, and be the best Mother, Fiance, Daughter (my parents really need me right now), and friend. I want my art business back, I want it all. Please help, or please give some suggestions that I can print out and give to my doctor at my next appointment.
Thank you guys, so much! I know this was a terribly written post, but there's just been SO MUCH I don't want to leave anything out. I currently feel like someone has been mistaking my flank as a giant gong, and repeatedly pounding on it out of confusion.
Thanks for your time, and God Bless!
-Hannah Conda
The unusual features of your problem are that they don't seem entirely connected, i.e., migraine with UTI. Because it is very rare to have a young woman have multiple conditions that crop up close together, unfortunately, doctors do start to think symptoms are played up by anxiety and then they start to discount them. I remember having this intense burning pain on my flank that nobody could figure out. In retrospect I now think it was a nerve issue as I've been diagnosed with inflammatory motor nerve problems and can recognize nerve pain which is unique. It seems the urology issues are your main problems right now. There is a common condition called interstitial cystitis which mimics UTI's and can cause abdominal pain. Check that out. You might also want to consider going to a gynocologist/urologist for a work-up. One doctor that connects the two systems which sit so close together they can affect each other. Unless you're in so much pain that causes nausea, those symptoms are unrelated and should be investigated/treated by a gastroenterologist. It's always better to have one main doctor, but I've found that making the decision to seek the care of a specialist provides better outcomes. Specialist will always send your primary doctor results of your tests. And IF anxiety does play a part in some of your issues, the confidence that a specialist is treating you can go a long way. Hope you find some answers soon.
Do you have an iud? My mirena caused me the exact same symptoms. I was convinced I had Lyme disease(I was bitten by a tick around the time the symptoms became unbearable). Then I started developing nerve damage and was afraid I had multiple sclerosis. The kidney/ urinary tract infections are most likely from the catheter and the drs probably just don't want to admit any correlation. Although I did also have consistent utis with my mirena. I'm not sure how that's related other than the fact that my immune system was busy fighting the iud, and basically every system in my body. Also, you should have your thyroid, vitamin, and mineral levels checked.
Has your urine been tested as far as kidney stones? It really sounds like kidney stones to me. No more CT scans. They have too much radiation. Just do the 24-hour test they send off for analysis. I will send you a link to read about it.
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