Dermoid cyst undetectable by common scans
Posted , 4 users are following.
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.
So thats where I'm at now. I'm scared they won't see anything and this is just a weird fluke that they can't understand and the pain will be permanent. Is this common? Has anyone else ever had negative MRI and CT scans with a dermoid cyst? I just have absolutely no idea what else this could be! Hair and rocky objects in my pee! They've ruled out kidney stones, bladder stones, all that. What is wrong with me? Why can't they see anything on my scans?
0 likes, 4 replies
BeenthereSr Rockyroad28283
Posted
Rockyroad28283 BeenthereSr
Posted
ouchiegrouchie Rockyroad28283
Posted
Rockyroad is definitely the right name for you!
My goodness dear I am ao sorry to hear about what you are going through. What we each go through should never be a competition. However, if it was you would win for the worse experience with a dermoid! I cannot believe (well actually I can) that you are passing hair in your urine. In all of my dermoid research over the years this is a first.
I had large dermoids (grapefruit size, almost torsion) in each ovary. I went to the ER many times. Was told to pop bc pills and take ibuprofen with pain pills and stop working 50+ hour weeks (like it was a choice!). I had an u/s and they didn't show up. I definitely did not pass hair. Stones? Who knows. The clots were so huge and thick I wouldn't know. Finally my bf at the time, after a few times passing major clots post you known what, made me go to the ER where we lived (a major city, new ER. I know they did a vaginal u/s and finally found one of them. Urgent surgery the following week. Since they missed it I had to do a laperotomy and after that I was never the same. That's why I am on this site - a decade later and after multiple surgeries.
I am sharing this in hopes that you find the strength, despite how drained you must feel, to fight hard to be taken seriously and to receive the proper care you deserve. I am not a doctor but it sounds like you need a laprascopic asap. Try to have a loved one get educated about this stat so that they can be your advocate while you go through procedures. I did not and had far too much faith in the healthcare system. Doctors, medical staff and especially insurance companies, they are a bit like law enforcement - some are good people doing it the right way others are terrible.
Hystersisters is an excellent resource and place for support. Of course, if you want a doctor to listen - get some medical journals or doctor based sites ready to use as sources in any of your appointments.
Huhs to you and hang in there lady!
Ouchie
Ps- Please keep us posted, so we don't wonder and worry what happened to you and so your experience can help others.
Rockyroad28283 ouchiegrouchie
Posted
Thanks for all of your kind words! I will keep you posted. Like I said I have a cystoscope appt coming up soon where I'll be put under, cause I just couldn't take the pin when I was awake. I'm hoping they find something then, in fact I'm praying and hoping and crossing every finger they find something then. How could they not right??? I just want this to be taken care of, and the negatives from the scans aren't filling me with much hope. Could a dermoid have popped and not be visible on a scan, but the hair and all its contents are working their way through my bladder lining and slowly Benin pushed out? Is that even a possibility? I just don't know anymore.