Hello Doreen, Josie, ginger. everyone....1st, let me say Doreen how sorry to hear all the stuff you are going through and know that you are not alone in your struggle to get answers. I too have been to my wits end at times with the shoulder shrugs, I don't knows, and dead ends because of my "uniqueness".. Yes it is a "if its not broke " attitude... a generous guess, most likely liability related
one of my many story's you may appreciate.....
I have some what but of course different the same kind of experience having abdominal pains / cramps and feelings what I would describe as intestinal hernia just below the waist line. This has gone on for years. Just a reminder, I am intersex, male but externally near female in appearance, in my heart mind soul all male, just never had scrotum, functioning testicles, produced testosterone , micro, micro, penis, etc..But on that same note, my doc knows too well that my testicles are, if anywhere at all, in the abdomen. I have asked for years why they cant go exploring. the reason is, they have to have a reason and pain is not it. they have to have some sort of reason to suspect a particular "thing is causing it" in my case, as previously posted, being intersex, my testicles were very tiny, non functioning, but that isn't enough even with a fear of cancer, first a psa must be done, xray, then ct, mri, ultrasound ect. here is the rub...
Unless the person reading the xray, ct, what ever is looking specifically for pea size testicles, they are looking for only any signs of tumor or cancer by color /contrast anomaly. and the notes will come back noting any irregularity's such as spots on liver/ kidneys etc, normal stuff. They will not note pea size testicles in abdomen, they will assume they are removed or something.
I began to ask specifically where were my testicles, of which my doc shrugged and said I don't know, but there is no notes of problems.. Ah, but I said, did they "SEE THEM? ?" locate them?" so I asked the doc to check which then spurred another CT scan, which was now inconclusive. So, remembering, knowing they need a reason, my pain continued to get worse. and a ultrasound was ordered to locate my testicles.
Now that turned into a spectators sport for sure at the imaging center, who doesn't want a chance to see a real live intersex person..... I just put a towel over my face as they gawk at me But, success at last, one tech after another came in and kept asking me where I thought they were. my history, if I had them removed etc... eventually they called my doc and suggested a trip to ER because of "NO Blood flow to testicles" (the reason), of which they could not determine were even them. lol. pass the buck. So being I am already going to the university for neuro muscular disorder and numerous other things, that was my choice, and its was off to there.
24 more hours of spectator sport in the ER and finally, One of the directors of urology walked in, cleared all of the room, told them to remove the imaging machine, enough pictures she said, she needed an empty room.
She walked over to me and apologized and said something like, It seems you have very tiny non functioning testicles in your abdomen, but you knew that, its been like that your whole life. What I believe is going on, you have no blood flow to either and standard protocol is to remove them, Its your choice where you go, but if you want to set up an appointment with us at our clinic, we can remove them and while we are at it, insert some prosthetic testicles. you don't have and actual scrotum, but a cavity, but we can make it work, and maybe you can feel a little better about things.
I waited a second, took the towel of my face and wanted to hug her. the first doc in 50 years that understood. But today, I have them.. a little normal finally and a lot less pain. for asking the right question .
this is a synopsis of what occurred but I have learned now to press and ask, they do not treat things as if its in a "cloud of information" even though all my docs are in the network with access, but each as an individual thing.
Maybe this helps explain things
DDan