My aunt has a mystery ailment. YANHD, but the hive mind is often wise.
November 9, 2013 5:45 PM Subscribe
I've posted here several times in the past regarding my own mysterious health woe, and got some good suggestions, so I figured I'd ask again. : ) My family is well aware how many medical professionals I've seen in the last 10 years, so telling me their own tales is not all that weird. In this case, we're talking strange bladder pressure that seems to cause pain. More [somewhat TMI] inside...
My aunt has had bladder infections that have come and gone, like many women I have known, but this, she says, doesn't feel like one. She's in her 60's.
She has already been to several docs, including a urologist, ob/gyn, gastroenterologist, and orthopedist (he thought maybe she had referred pain from some kind of back injury).
They haven't done a super-recent MRI or given her antibiotics (yet), although she's taken antibiotics in the past for bladder infections, which worked, and has previously had MRI's on her innards from periodic foot and lower back pain.
-> Several urine cultures, stool samples, pelvic sonogram, and colonoscopy have all been negative. <-
None of these doctors seem to think it is anything serious, but the fact that it is starting to debilitate her makes it serious, if you ask me. Here is how she describes it:
"Lower abdominal pain that seems to go straight through to lower back (centered between waist and tail bone), drawing pain going down inside of thighs from pelvic area. Pain has been strongest upon arising after a full night’s sleep, which I feel while still lying in bed. There is moderate to severe bladder pressure , similar to a bladder infection, but without pain when urinating (just the pressure). There have been 2 or 3 bowel movements within the first hour or two after walking up (not diarrahea). Chills and nausea, have also occurred, as well as a general feeling of lethargy. The symptoms have been occurring since late August, some days worse than others, some days almost none at all. I always have a full night’s sleep, and have had one stretch of 5 days with no symptoms at all. Recently, the bladder pressure returned so severely that I had to leave a theater performance in the middle. "
IANHer Doc, either, but sounds to me like more radiological scans might be in order, if not a trial of some kind of antibiotics. But it is bizarre to me that she's had days that have gone by with no symptoms at all. Since my own health problems have stemmed greatly from digestive weirdness, I suggested she try some minor dietary alterations just for the heck of it (like the usual suspects: nuke gluten for a month or two, or dairy, coffee, chocolate, spicy foods, etc). So far she's tried the no coffee or dairy, and no effect.
Ok medical mystery mefiters, whaddaya got?
Thanks very much.
My aunt has had bladder infections that have come and gone, like many women I have known, but this, she says, doesn't feel like one. She's in her 60's.
She has already been to several docs, including a urologist, ob/gyn, gastroenterologist, and orthopedist (he thought maybe she had referred pain from some kind of back injury).
They haven't done a super-recent MRI or given her antibiotics (yet), although she's taken antibiotics in the past for bladder infections, which worked, and has previously had MRI's on her innards from periodic foot and lower back pain.
-> Several urine cultures, stool samples, pelvic sonogram, and colonoscopy have all been negative. <-
None of these doctors seem to think it is anything serious, but the fact that it is starting to debilitate her makes it serious, if you ask me. Here is how she describes it:
"Lower abdominal pain that seems to go straight through to lower back (centered between waist and tail bone), drawing pain going down inside of thighs from pelvic area. Pain has been strongest upon arising after a full night’s sleep, which I feel while still lying in bed. There is moderate to severe bladder pressure , similar to a bladder infection, but without pain when urinating (just the pressure). There have been 2 or 3 bowel movements within the first hour or two after walking up (not diarrahea). Chills and nausea, have also occurred, as well as a general feeling of lethargy. The symptoms have been occurring since late August, some days worse than others, some days almost none at all. I always have a full night’s sleep, and have had one stretch of 5 days with no symptoms at all. Recently, the bladder pressure returned so severely that I had to leave a theater performance in the middle. "
IANHer Doc, either, but sounds to me like more radiological scans might be in order, if not a trial of some kind of antibiotics. But it is bizarre to me that she's had days that have gone by with no symptoms at all. Since my own health problems have stemmed greatly from digestive weirdness, I suggested she try some minor dietary alterations just for the heck of it (like the usual suspects: nuke gluten for a month or two, or dairy, coffee, chocolate, spicy foods, etc). So far she's tried the no coffee or dairy, and no effect.
Ok medical mystery mefiters, whaddaya got?
Thanks very much.
I can't attempt to diagnose her based upon this but I can say two things:
1. MRIs done due to low back/foot pain were probably of her spine, which would be unlikely to reveal the cause of her abdominal pain/bladder pressure.
2. Antibiotics are not indicated if there is no sign of infection, and urine cultures are negative, so it's pretty much certain that there is no urinary tract infection.
Other things to consider could include interstitial cystitis, pelvic floor dysfunction/prolapse, uterine fibroids, or cancer (not to be scary, this is not likely but it can present with nonspecific symptoms). I'm assuming she would have mentioned if she had urinary incontinence, but that would be an important thing for her doctor to know.
posted by treehorn+bunny at 6:15 PM on November 9, 2013
1. MRIs done due to low back/foot pain were probably of her spine, which would be unlikely to reveal the cause of her abdominal pain/bladder pressure.
2. Antibiotics are not indicated if there is no sign of infection, and urine cultures are negative, so it's pretty much certain that there is no urinary tract infection.
Other things to consider could include interstitial cystitis, pelvic floor dysfunction/prolapse, uterine fibroids, or cancer (not to be scary, this is not likely but it can present with nonspecific symptoms). I'm assuming she would have mentioned if she had urinary incontinence, but that would be an important thing for her doctor to know.
posted by treehorn+bunny at 6:15 PM on November 9, 2013
I was also thinking interstitial cystitis, but I am not a doctor or trained in medicine.
posted by c'mon sea legs at 6:16 PM on November 9, 2013
posted by c'mon sea legs at 6:16 PM on November 9, 2013
Did any of the doctors she saw do an ultrasound? That could confirm or rule out things like cysts or fibroids.
posted by entropyiswinning at 6:33 PM on November 9, 2013
posted by entropyiswinning at 6:33 PM on November 9, 2013
A pelvic sonogram is an ultrasound.
posted by treehorn+bunny at 6:41 PM on November 9, 2013
posted by treehorn+bunny at 6:41 PM on November 9, 2013
My first thought was ovarian cancer. Ultrasound/MRi asap!
posted by zia at 10:30 PM on November 9, 2013 [1 favorite]
posted by zia at 10:30 PM on November 9, 2013 [1 favorite]
It is highly likely that the many doctors she's seen have collectively ruled out most all of the scary things. Nonspecific pain makes everyone feel bad, and nonspecific abdominal pain is probably the most frustrating.
Try seeing a pain management doc to start thinking about ways to treat the symptoms, while all those other docs work on figuring out what the problem is.
posted by sanderman at 11:06 PM on November 9, 2013
Try seeing a pain management doc to start thinking about ways to treat the symptoms, while all those other docs work on figuring out what the problem is.
posted by sanderman at 11:06 PM on November 9, 2013
If not IC, Overactive bladder... idiopathic by definition, but easily treated and the medication for it is pretty harmless. In fact, if you're in the US you can get patches over the counter (Ditropan = oxybutynin hydrochloride). I find the pills more effective, but it's an easy starting point. I saw a urogynocologist to get diagnosed, I had many similar symptoms (was NOT incontinent). A urogynocologist will also be able to diagnose pelvic floor issues, prolapse, etc. It was he who found my ovarian cysts too.
Yeah, make sure they've eliminated ovarian cancer.
She's right... it's AWFUL, and it is absolutely miserable enough to push for some sort of treatment! pass on my sympathy!!
posted by jrobin276 at 11:57 PM on November 9, 2013
Yeah, make sure they've eliminated ovarian cancer.
She's right... it's AWFUL, and it is absolutely miserable enough to push for some sort of treatment! pass on my sympathy!!
posted by jrobin276 at 11:57 PM on November 9, 2013
As someone with bladder pain my heart goes out to her. I have no guesses as to exactly what it is, but if it is IC, a week's worth of dietary changes might not be long enough to have it make any difference. It took me a lot longer than a week of following a strict diet to begin to feel better from my IC. Hope she finds a good doctor soon, because that was the key for me - finding someone who could figure out what was wrong.
posted by Shebear at 3:15 AM on November 10, 2013
posted by Shebear at 3:15 AM on November 10, 2013
I had two years of bladder pain and increasingly frustrating tests, treatments and attempts to determine what was wrong with me. Your aunt's story sounds eerily similar to my experience. Last April I changed the whole slate of doctors and the new ones found that I was likely not having bladder infections--even though bacteria was found that alone did not indicate infection--but that the pain was likely a kind of referred pain from my digestive system, perhaps caused by my body's difficulty in dealing with the iron I had been prescribed to prevent a recurrence of anemia.
After stopping the iron, I adjusted my diet, increasing fruits and vegetables, decreasing carbohydrates and all but eliminating gluten. I no longer have pain and have no infections. I sleep comfortably again and feel that problem has been solved. I got better from the time I first began making these changes but have continued to improve and now feel this problem has been completely solved. Like everyone else, I agree she should do all the cancer checks that might be indicated, I certainly did, and if, like me, she's left with "I don't know" but still in pain, by all means experiment with the dietary recommendations.
posted by Anitanola at 4:18 AM on November 10, 2013
After stopping the iron, I adjusted my diet, increasing fruits and vegetables, decreasing carbohydrates and all but eliminating gluten. I no longer have pain and have no infections. I sleep comfortably again and feel that problem has been solved. I got better from the time I first began making these changes but have continued to improve and now feel this problem has been completely solved. Like everyone else, I agree she should do all the cancer checks that might be indicated, I certainly did, and if, like me, she's left with "I don't know" but still in pain, by all means experiment with the dietary recommendations.
posted by Anitanola at 4:18 AM on November 10, 2013
I come from an alarmist family, but like Zia, I too thought Ovarian Cancer. I surely hope not.
posted by Ruthless Bunny at 7:34 AM on November 11, 2013
posted by Ruthless Bunny at 7:34 AM on November 11, 2013
I came down with IC in my 60's in conjunction with atrophic vaginitis and pelvic floor dysfunction.
There is a fantastically helpful forum called The Interstitial Cystitis Network and I highly recommend you or she or both of you go there asap.
The (mainly) women there are tremendously knowledgible about IC and all related conditions and are well aware of other diseases that my have similar symptoms such as ovarian ca which is a worry to many until ruled out. Any and all questions are and have been asked and there is a great history there to search. They are very welcoming and she will get many responses to any inquiries. Good luck!
posted by Tullyogallaghan at 5:03 PM on November 11, 2013
There is a fantastically helpful forum called The Interstitial Cystitis Network and I highly recommend you or she or both of you go there asap.
The (mainly) women there are tremendously knowledgible about IC and all related conditions and are well aware of other diseases that my have similar symptoms such as ovarian ca which is a worry to many until ruled out. Any and all questions are and have been asked and there is a great history there to search. They are very welcoming and she will get many responses to any inquiries. Good luck!
posted by Tullyogallaghan at 5:03 PM on November 11, 2013
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posted by hegemone at 5:56 PM on November 9, 2013 [3 favorites]