Dermoid cyst undetectable!!! MRI and CTscan all negative, but nothing else it could be!

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Had hair in urine for the past few months. Really REALLY hurts to pee, and I was originally diagnosed with Interstitial cystitis about a year ago. With IC flare ups normally last a long time, then subside for months, then come back. But it was different for me. This is how it would always go: I would start feeling pain, then more pain, then excruciating pain over the course of a week, then I would feel what felt like a small obstruction pop out of my urethra, and everything would soon return to a level 0 or 1 on the pain and discomfort scale. I would be fine for about a week then bam, another obstruction, pee would trickle, and pop, another microscopic undetectable obstruction seemed to pop out and my stream would be fine again. It was way too up and down to be IC, and I was 100% sure things were coming out of me, even though I could never really see anything that came out. Then during one "flare up" these three black stones, smaller then the tip of a pencil, came out and were at the bottom of the bowl. I assumed they were finally big enough to be seen, as if they'd grown or something, so I saved them. A few weeks later a small black hair about the length of my thumb nail exited my urethra, with excruciating pain (9 or 10 for sure), and then for the past few weeks more and more have come out.

This all sounds like a dermoid cyst that's pushed its way into my bladder or urethra and is emptying its contents into them. I am subsequently peeing out those contents, and they are ripping up my urethra!!! Hair is sharp people! And long! In fact just last week I peed out a hair so long I had to pull the tail end of it out, it was about 10 inches long!

But here's the problem: neither an MRI nor CTscan have shown anything wrong in the area! Both tests came back negative, and they show no strange growths or tumors of any kind. Just today I went in for a cystoscope but it was too painful, I screamed so loud my urologist got scared and refused to keep going. I think my urethra is just so raw and scarred I can't take any more abuse to the area. So they're going to have to knock me out to do the scope test, but I don't know when that's gonna be.

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8 Replies

  • Posted

    So sorry to hear this! I have had two dermoid cysts removed which contained hair and calcification, but these were on the ovaries and easily detectable. I dont know what those small black things could be?? Are you able to get something for pain management while you wait for the scope? Sorry to hear you are in so much pain and wish I could offer further advice.
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    • Posted

      Thanks. No, no pain killers. I'm taking some of the Percocet I had left over from my c section six months ago, but it doesn't do much. Just hot pads between my legs and ibuprofen.

      I'm just mad. It's frustrating. I feel like I'm going crazy. I feel the blockage, I pull out the hair, I feel the pain, but no one in the medical field has seen a single sign or has a single clue as to what is going on with me. IC doesn't do this! I even gave my urologist the hair samples and the three stones and they just took them and said "huh, very strange, I'm sure the MRI will show us something," and then bam, nothing. It's in or on my bladder yet nothing shows it.

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    • Posted

      It could be 'hair-like', what would I give for it to be examined chemically and under microscope. Also the stones. If a teratoma grew in bladder, it should show up somewhere, but if e.g. candida caused some strings...hm. The composition would be different, the appearance the same. ?

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    • Posted

      I've held it in my hands and it is definitely hair. It even has a pale tip, like how a hair buried in skin where it grows at the follicle is pale for a few milimeters. I say it, but I've collected tree or four at this point, all of varying length. And would the teratoma IN a bladder be visible on a scan?

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    • Posted

      Yes, it should.

      That's why it's so odd. You pass visible solid structures. The visible structures have to grow from cells, usually hair is just part of the whole teratoma. Even hair is echogenic different in a ultrasound/mri/CT scan. Is it that small to be overlooked? hm. Or does it sit somewhere further up where it gets washed into bladder? But your urethra and ureter and kidneys were checked, too, right?

      Good that you get a scope under sleep. Eyes looking at the lining directly will be best.

      I do so hope the answer is found and can be treated. Sound's horribly painful.

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  • Posted

    I wonder if it is possible to ask your specialist on your next visit to show you your scan/MRI( even if it shows nothing ) and if he/she can explain what is shown exactly in the scan and MRI. I find it hard to believe they found nothing given that you passed out two stones? and hairs? I am concern with your C section six months ago if that had anything to do with your current problem? I hope that might help? What was the C sectio for?

     

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