TARHEEL': re: Blood in the Urine & Coccyx Pain

[Guest guest]

Dear Ms. Tarheel:

No need ever to apologize for " wasting " anyone's time on the list. You are

definitely NOT wasting anyone's time here!

Chances are, the very problems you write about are ones that other LOL

(Ladies of the List) have encountered--or possibly WILL encounter one day. So,

you

might actually be *saving* some of us time, by sharing and discussing these

conditions here, now!

Furthermore, with the excruciating kind of pain you're experiencing (needing

Oxycodone, and leaving you crying and unable to function), you must speak with

your doctor about this and *press for answers*--please don't put it off!!

BLOOD IN THE URINE:

While it's true that some people will have blood in the urine for no apparent

reason, before your doctor declares you to be a " patient with HUO " (Hematuria

of unknown origin), I think a more thorough workup is in order-- INCLUDING AN

IVP (Intravenous Pyelogram)--an x-ray of your kidney and of your ENTIRE

urinary tract.

Given your mother's medical history of bladder cancer, it's no wonder that

you're highly concerned about the presence blood in your urine. No wonder you

and your doctor are focussing on your bladder.

However, if the cystoscopy didn't reveal any answers, I think you and your

doctors need to investigate OTHER causes, as well--since bleeding in the urine

can have its origin anywhere along the urinary tract.

For starters, I'd say.... GET AN IVP (x-ray), also known as an Intravenous

Pyelogram!!!

'Ya think a urologist woulda actually have thought to order such a routine

test.......... if it were really necessary?

Well, think again.

Like you, my (very healthy) mother had blood in her urine for well over a

year, and her urologist put her on daily antibiotics. Antibiotics???? for every

single, (bloody-- albeit *microscopically* bloody) day of her life!! Even

without a confirmed infection.....Yeah, I know it's appropriate for some

patients...but.....

When I realized how long Mom had gone on antibiotic therapy without the

requisite diagnostic/imaging tests that I, myself had had as a kidney

patient....I

became increasingly dissatisfied with the ongoing care she was receiving

from her urologist.

Then, when Mom told me about how this

Viagra-dispensing-lethargic-old-geezer-of- a -doctor had actually YAWNED widely

--and audibly!!!-- AT HER (without

covering his mouth!!!) --exposing all of his back molars--- during her last

unproductive appointment with him, well, my patience really wore thin....and I

got realllllly mad at this guy!!!!!!!!!!!!!!!!!!!

And, I insisted on being present at Mom's next appointment--to protect her

from this Hippocratic Oaf. ;-)

Those of you with long memories might remember what R-E-S-P-E-C-T my mother

got once Daughter Roma came to her gurney side in the ER, after being hit by a

car, last year......

( Gee, I don't think I *LOOK* intimidating--but, after all my health

adventures, maybe I'm getting a certain no-nonsense reputation in the local

medical

community !!!!!!)

At Mom's appointment, I had intended to be a conduit of information, only an

observer. But, somehow......right off the bat, I became this specialist's

right hand " second opinion. "

In a totally hilarious (for Mom and me) unexpected turn of events, during the

entire appointment, I was immeditely greeted and treated with the most

exceptional deference--and by association, once again, I suppose, so was my

mother!!

I had really prepared to be condescended to by this guy, but actually the

opposite happened. Every move, every opinion of this doctor seemed to hinge on

what *I* thought. So, when my mother asked whether she should have an x-ray of

her entire urinary tract,

He turned to me, he asked " What do YOU think? Do you think she should have an

IVP? "

I was momentarily stunned: Had this geriatric guy had a " senior moment " and

perhaps momentarily confused me with his partner, in practice with him?????

But I answered: " Yes, absolutely! " Out comes his prescription pad and lo, and

behold, an order for an IVP was written for Mom.

Then, I mentioned MRI, and again: " Do you think she should have an MRI? " I

was momentarily speechless. But I blurted out something about how the MRI could

wait until AFTER Mom had the IVP, and the urologist actually said " Yes, I

agree. "

HUH???? All my years of experience with GODs (GYNOS of DOOM) and GAGs

(Grandiose Arrogant Gynos) hadn't prepared me for this!

Anyway, the upshot of this, is that Mom had her IVP. The test revealed a tiny

stone, which was in one of her ureters.

Inexplicably, a subsequent test revealed that the stone had later dislodged

and probably had been expelled. And now, no more blood in the urine, no more

lifelong antibiotic therapy.

Sorry for the digression...but the moral of the story is I think that you,

like my Mom, really need more testing.

COCCYX

As for your coccyx pain, I wonder if you also have pain when having a bowel

movement

Depending on the position, fibroids can certainly compress the bowel, giving

rise to pain, which I imagine could refer to your tailbone area. I only

learned of my fibroidal uterus compressing my bowel with a CT Scan (which,

however,

is NOT the best imaging study for uterine fibroids--an MRI would be best.)

Keep asking questions! I know it can be daunting to deal with multiple

symptoms and health concerns, but patient persistence does pay off!

If your current doctors aren't taking your complaints seriously, it may be

time to throw the Purple Patient Protest Pillow at 'em............ and find

someone who will!!!

-Roma,

Purple Patient Protest Pillow Provider

In a message dated 4/12/2004 8:57:15 AM Eastern Daylight Time,

imatarheel@... writes:

A little background first..........Ok, I joined this group probably

over a year ago, tried to learn as much as I could but doctors told

me " wait and see " was their course of action. So, that is what I

have been doing. I have uterine fibroids and cysts on my ovaries.

They found these accidentally and told me they were very small, not

to worry, they are common. I had gone for an MRI to find out why my

coccyx (tail bone) hurts when I sit. Never have gotten an answer on

why my tail bone hurts. I've been to the chiropractor, had physical

therapy, even bought a tens machine, nothing helped. I have had two

pelvic ultrasounds, they also did vaginally at the same times.

These were done a little over 6 months apart.

Everyone talks about pain on here. Maybe I'm crazy but it seems my

pain started after my ultrasounds, and I'm speaking of the vaginal

ultrasound. I had a little bleeding afterwards but I just assumed

that was normal. I am on Yasmine BCPs and my GP told me if I didn't

want a period because of my heavy bleeding to take the pills

continuously, not to take the sugar pills. It is glorious not to

have a period, but I worry that this is not the best for me. I've

had heavy bleeding ever since I gave birth to my children, 19 and 20

years ago.

Ok, the pain....I have pain in the area as if I am ovulating, which

is silly because I can't be. Last week, the pain was sooo bad I

took a Oxycodone which I had left over from gall bladder removal I

had last year. The pain was so bad all I could do was cry and lay

around. Could this pain be coming from the ovarian cysts OR the

fibroids? I do have back pain, but am in need of weight loss also

so I'm sure that does not help the situation. I wonder if these

fibroids, no matter how small or the cysts could be causing my back

pain AND the tail bone pain AND the frontal pelvic area pain. I

have regular check ups (at least every 6 months) and blood work done

before I see my GP.

OHHH, one thing I almost forgot. This may not even be related but

just thought I would throw this in. My regular gyno check up last

September showed I had blood in my urine. Did a follow up, same

thing. So I saw a urologist, he told me that blood in urine for

some ppl is normal. He performed a cystoscopy and dilated my

urethra. Said my bladder looked fine. Follow up, I told him I

didn't think the dilation helped any, he blew me off. Follow up

still had blood in urine. This concerns me terrible because my

mother died from bladder cancer. It is not supposed to be

heriditary...........but, it still scares me.

I have another cystoscopy scheduled for June.

Question, any opinions on whether blood in my urine could be related

to the heavy bleeding, fibroids and cysts.

I have been anemic for quite some time and am working toward getting

that under control. I do stay tired, at first I just called myself

lazy. I grew up on a farm and have never been a lazy person. It is

sooooo aggravating.

Am just wondering if anyone has an opinion from your life

experiences or other wise. I don't want to waste anyone's time but

I did do a search on here and couldn't find anything specific to my

situation. Thank you for any help.