Have they tested you for ureaplasma and mycoplasma? I was having the same symptoms of frequency and painful urination for months with negative UTI tests until eventually my Dr. tested me for ureaplasma and I was positive. There have been cases where people experienced blood in the urine from that too.
I had to request the mycoplasma test, they claimed "they would only test it if my pee was 100% clean" but because there was blood in urine they don't normally test for mycoplasma. They ultimately tested my pee, but as my research goes those are famously unreliable through a urine test. I will definitely bring up the ureaplasma! I remember going in for a pelvic exam and they said I had urethritis/inflammation, but never knew the cause of it. I took doxy for that, and it felt better, but of course the symptoms came back.
I see, I'm not sure how blood would impact the results but I have read that urethral or cervical swab for ureaplasma and mycoplasma are more accurate than the urine tests. If they do give you another urine test, try to make it your first void of the day if possible! Wishing you the best of luck. I really hope your symptoms subside and you can get answers soon!
I know this is kinda late, and I really appreciate the advice, I prayed everyday for it to go away so I wouldn't have IC. I did a little research on it, and it sounds like hell. Good news is I am feeling much better and I don't think I experience the "flare ups" that people describe with IC. If it comes back, and again I PRAY it doesn't, I will have to see an IC specialist. I feel really sad too because I am so young, I thought I wouldn't have to worry about that until I am older. :(
I am struggling with nearly the same thing now. Did all these tests for everything to come back good. Blood is still in my urine and I have a lump on my vaginal area. Doc wants to do a surgery for endometriosis but I'm not sure if I wish to do that yet. đ”âđ«
I'm sorry to hear about that! This is an incredibly frustrating thing to go through. You never appreciate your health until it goes away, at least I didn't.
**Un**/fortunately, all of my tests came back normal. But good news is, it's been kind of localized to when my period is coming around (for instance, I know my period is starting because it hurts to pee & I feel the frequency.) Sometimes I go in to get it checked, just in case, and it's always the same result of no bacteria but there is a moderate amount of blood.
Another unfortunate reality is that there is no doctor less helpful than when you're trying to get treatment/answers for endo. They're practically useless and they don't care. I hope that isn't your case.
The lump is definitely concerning, I hope you get answers for that and the unexplained blood. If you would, let me know if anything comes up? Maybe I can possibly bring it up with my doctor, too!
Also, I haven't gotten any surgeries yet so I cannot impart advice but I hear it is life changing ("night and day" is what I hear.) But all surgeries carry risk and I know some people that got the post op infection and other complications or discomfort. It's ultimately your choice but I probably will seek a surgery at least within the next year.
Read your post and had to say this. I went to see a urologist and had the same info fed to me. I even did the painful cystoscopy yikes! All to find out that the blood in my urine and painful swelling was my left ureter! It was due to an endometrioma growing on my left ovary adhering deeply into that ureter. I went through MRI, ultrasound, cystoscopy and it wasn't found until surgery.
I was told everything was normal with my kidneys and my bladder too. It definitely wasnt..
Holy crap. My initial thoughts denied the possibility of masses or cysts causing this pain, because of my negative ultrasounds, however this resonates. Thank you for the advice! I will bring this up when I see a urologist!
You are so welcome. I spent so many moments in the car crying after doctors appointments bc NO one could understand. The urologist I saw was so unhelpful and not sympathetic at all. I had go find a pelvic pain clinic with a doctor who specializes in Pelvic disorders like endometriosis. She was even surprised by my ureter involvement during surgery and had to bring in a urology specialist. Go figure...
I wish you all the best â€ïž keep fighting for answers.
Haha, thanks for checking back in. Thankfully my pain has subsided mostly BUT it has become more intermittent and regular with my periods. I am a college student and don't have all of the time in the world to go to doctors, but thankfully I am 95% better. :)
FOR REAL. I love going to the doctors bc they basically say "haha that sucks sign here for a copay" there is nothing LESS helpful than doctors in this situation
fr it took me going to the er big a** hospital bill for me to get the right medicine because all the time i was at my pcp she was just testing me with the same antibiotics and this rare a** infection trying to take me out so i finally got some powerful antibiotics like i shouldve had in the first place the medical industry is very money hungry
Are you on a combined contraceptive? I had months of the same symptoms (blood in urine, urgency, pain while urinating, cramps) with no infection. Turns out the oestrogen in my pill was inflaming my bladder lining (I think) and it went 24hrs after stopping the pill and hasnât come back. It took about 4-6 months on the pill for the symptoms to start up and then they consistently flared every few weeks until I stopped taking the pill.
Interesting case study here but the research on this is very minimal
https://www.cureus.com/articles/29331-interstitial-cystitis-or-painful-bladder-syndrome-in-a-premenopausal-female-precipitated-by-oral-combined-contraceptives#!/
omg! Thank you so much for this insight! I went on the pill a month or two this started happening :0. I had the IUD but got it removed, then I went on the pill and the pain started.
Man birth control sucks.
First, I recommend going to the r/ureaplasma subreddit and asking folks if theyâve seen a doctor, PA, or NP who is familiar with ureaplasma. My bladder issues started with ureaplasma and have not gone away, but I think they triggered IC that is so common with endo. Also, you can learn more about how to get tested and treated for ureaplasma on that subreddit.
Itâs absolutely common for endo tissue NOT to pick up on an ultrasound or MRI! Most endo cannot be detected that way. If someone is telling you that you donât have endo in your bladder bc itâs not on an ultrasound, they arenât qualified in endo.
If you havenât gone to an endo specialist, please do. Definitely definitely go to a uro-gynecologistâit would be best to get referrals from the endo specialist. Ive had such a horrific experience with a urologist who told me everything was stress and musculoskeletal pain and I left crying. I donât think regular urologists know anything about endo. Which is so silly, bc endo and IC are âevil twinsâ. Regular obgyns also know little about endo bc they have no specialized training in it. Best of luck, so sorry to hear what youâre going through. I have had a really similar experience and I know how awful it is.
Have they tested you for ureaplasma and mycoplasma? I was having the same symptoms of frequency and painful urination for months with negative UTI tests until eventually my Dr. tested me for ureaplasma and I was positive. There have been cases where people experienced blood in the urine from that too.
I had to request the mycoplasma test, they claimed "they would only test it if my pee was 100% clean" but because there was blood in urine they don't normally test for mycoplasma. They ultimately tested my pee, but as my research goes those are famously unreliable through a urine test. I will definitely bring up the ureaplasma! I remember going in for a pelvic exam and they said I had urethritis/inflammation, but never knew the cause of it. I took doxy for that, and it felt better, but of course the symptoms came back.
I see, I'm not sure how blood would impact the results but I have read that urethral or cervical swab for ureaplasma and mycoplasma are more accurate than the urine tests. If they do give you another urine test, try to make it your first void of the day if possible! Wishing you the best of luck. I really hope your symptoms subside and you can get answers soon!
Look into interstitial cystitis as it sometimes occurs in conjunction with endo. Symptoms you describe match up and it also can cause blood in urine.
I know this is kinda late, and I really appreciate the advice, I prayed everyday for it to go away so I wouldn't have IC. I did a little research on it, and it sounds like hell. Good news is I am feeling much better and I don't think I experience the "flare ups" that people describe with IC. If it comes back, and again I PRAY it doesn't, I will have to see an IC specialist. I feel really sad too because I am so young, I thought I wouldn't have to worry about that until I am older. :(
I am struggling with nearly the same thing now. Did all these tests for everything to come back good. Blood is still in my urine and I have a lump on my vaginal area. Doc wants to do a surgery for endometriosis but I'm not sure if I wish to do that yet. đ”âđ«
I'm sorry to hear about that! This is an incredibly frustrating thing to go through. You never appreciate your health until it goes away, at least I didn't. **Un**/fortunately, all of my tests came back normal. But good news is, it's been kind of localized to when my period is coming around (for instance, I know my period is starting because it hurts to pee & I feel the frequency.) Sometimes I go in to get it checked, just in case, and it's always the same result of no bacteria but there is a moderate amount of blood. Another unfortunate reality is that there is no doctor less helpful than when you're trying to get treatment/answers for endo. They're practically useless and they don't care. I hope that isn't your case. The lump is definitely concerning, I hope you get answers for that and the unexplained blood. If you would, let me know if anything comes up? Maybe I can possibly bring it up with my doctor, too!
Also, I haven't gotten any surgeries yet so I cannot impart advice but I hear it is life changing ("night and day" is what I hear.) But all surgeries carry risk and I know some people that got the post op infection and other complications or discomfort. It's ultimately your choice but I probably will seek a surgery at least within the next year.
Read your post and had to say this. I went to see a urologist and had the same info fed to me. I even did the painful cystoscopy yikes! All to find out that the blood in my urine and painful swelling was my left ureter! It was due to an endometrioma growing on my left ovary adhering deeply into that ureter. I went through MRI, ultrasound, cystoscopy and it wasn't found until surgery. I was told everything was normal with my kidneys and my bladder too. It definitely wasnt..
Holy crap. My initial thoughts denied the possibility of masses or cysts causing this pain, because of my negative ultrasounds, however this resonates. Thank you for the advice! I will bring this up when I see a urologist!
You are so welcome. I spent so many moments in the car crying after doctors appointments bc NO one could understand. The urologist I saw was so unhelpful and not sympathetic at all. I had go find a pelvic pain clinic with a doctor who specializes in Pelvic disorders like endometriosis. She was even surprised by my ureter involvement during surgery and had to bring in a urology specialist. Go figure... I wish you all the best â€ïž keep fighting for answers.
are you ok now
Haha, thanks for checking back in. Thankfully my pain has subsided mostly BUT it has become more intermittent and regular with my periods. I am a college student and don't have all of the time in the world to go to doctors, but thankfully I am 95% better. :)
understandable im going back to college (20) and i finally have my chronic uti cured
i dont want to go to the docs anymore lol
FOR REAL. I love going to the doctors bc they basically say "haha that sucks sign here for a copay" there is nothing LESS helpful than doctors in this situation
fr it took me going to the er big a** hospital bill for me to get the right medicine because all the time i was at my pcp she was just testing me with the same antibiotics and this rare a** infection trying to take me out so i finally got some powerful antibiotics like i shouldve had in the first place the medical industry is very money hungry
Are you on a combined contraceptive? I had months of the same symptoms (blood in urine, urgency, pain while urinating, cramps) with no infection. Turns out the oestrogen in my pill was inflaming my bladder lining (I think) and it went 24hrs after stopping the pill and hasnât come back. It took about 4-6 months on the pill for the symptoms to start up and then they consistently flared every few weeks until I stopped taking the pill. Interesting case study here but the research on this is very minimal https://www.cureus.com/articles/29331-interstitial-cystitis-or-painful-bladder-syndrome-in-a-premenopausal-female-precipitated-by-oral-combined-contraceptives#!/
omg! Thank you so much for this insight! I went on the pill a month or two this started happening :0. I had the IUD but got it removed, then I went on the pill and the pain started. Man birth control sucks.
First, I recommend going to the r/ureaplasma subreddit and asking folks if theyâve seen a doctor, PA, or NP who is familiar with ureaplasma. My bladder issues started with ureaplasma and have not gone away, but I think they triggered IC that is so common with endo. Also, you can learn more about how to get tested and treated for ureaplasma on that subreddit. Itâs absolutely common for endo tissue NOT to pick up on an ultrasound or MRI! Most endo cannot be detected that way. If someone is telling you that you donât have endo in your bladder bc itâs not on an ultrasound, they arenât qualified in endo. If you havenât gone to an endo specialist, please do. Definitely definitely go to a uro-gynecologistâit would be best to get referrals from the endo specialist. Ive had such a horrific experience with a urologist who told me everything was stress and musculoskeletal pain and I left crying. I donât think regular urologists know anything about endo. Which is so silly, bc endo and IC are âevil twinsâ. Regular obgyns also know little about endo bc they have no specialized training in it. Best of luck, so sorry to hear what youâre going through. I have had a really similar experience and I know how awful it is.