4 ms·

I have been dealing with "mysterious" pelvic pain (cpps) for about 8 months or so. No doctor has been able to figure out what is wrong with me. The process of w

I have been dealing with "mysterious" pelvic pain (cpps) for about 8 months or so. No doctor has been able to figure out what is wrong with me. The process of working with doctors has been traumatizing to say the least. I once had trust in our medical system, but my perspective has changed. I now have little faith in most doctors ability to solve my medical problems. I recall someone on HN saying they are basically "chat bots", and sadly, I find that to be an accurate description. I've turned mostly to the internet for help. The internet has both helped and harmed me, though I would say overall has been less harmful than the experiences I've had with doctors. Doing my own research on the internet does make me feel like a "kook", but I would not even have a label for my condition if I had not done so. I can live with some discomfort if I can at least put a label on what I am feeling. It's also comforting to know there's people out there with the same condition as you. I have access to research and studies online, but if the doctor was not aware of it, they are quick to discredit it. The one thing I am grateful for about seeing doctors is their ability to rule out the common/serious conditions. That has been helpful, although I have found that simply "getting permission" for a procedure, or to see some specialist, is way too difficult. Often times specialists are booked out for months. It's so discouraging.

cowmoo728 4y ago
My wife has a mystery condition that flares up every few months / years. Every time it gets bad enough, the doctor prescribes antibiotics and then runs some tests. When the test results come back 24hr later, the conversation is always the same: "I thought it was [a very common problem], but the test results ruled that out. Since you already started the antibiotics, you should finish the course. Call me again if the problem gets worse." So we're left without answers and with an unnecessary prescription for antibiotics, every time. It's pretty frustrating, to say the least. The internet has come up with "interstitial cystitis" as a possible culprit, but it's not much of a diagnosis with an unknown cause, no diagnostic test, and no peer reviewed treatments.

cowmoo728 4y ago

My wife has a mystery condition that flares up every few months / years. Every time it gets bad enough, the doctor prescribes antibiotics and then runs some tests. When the test results come back 24hr later, the conversation is always the same: "I thought it was [a very common problem], but the test results ruled that out. Since you already started the antibiotics, you should finish the course. Call me again if the problem gets worse." So we're left without answers and with an unnecessary prescription for antibiotics, every time. It's pretty frustrating, to say the least. The internet has come up with "interstitial cystitis" as a possible culprit, but it's not much of a diagnosis with an unknown cause, no diagnostic test, and no peer reviewed treatments.