I'm busy figuring out how to properly cross-examine my doctors since I do NOT come to the table assuming that they are right. Yes, they know more, they have medical degrees, but as others in chronic pain and fertility blogs have shown, you can become quite schooled in the area of your problem. Husband thinks I'm engaging in some kind of devilish activity with all this internet research and he "wants to know what the DOCTOR says not billy bob on his blog." While obviously we all want to know what our doctors think, the blogging community and message boards are also a critical place for information that doctors just don't and often can't provide. These sorts of forums can tell you what kind of luck someone else had on a drug or with a doctor or a surgical procedure, something that you cannot get anywhere else. In no way is this in place of a doctor's advice but it's a great supplement and can be a great place to start with a list of questions for your next appointment or a way to find the next specialist.
Since my neurologist is recommending an exploratory surgery of my abdominal wall to check for nerve entrapments, I'm clearly heading back to my internet research. I've already had an exploratory surgery so I'm not really interested in having another one but thanks. And, I've had some doctors confirm that I should be looking into the pudendal nerve entrapment theory (thank you internet research). So I have a call with a specialist in Texas and an appointment with a specialist in Minnesota. I have a hypogastric nerve block on Friday so I'll probably post about that. I've had some other previously unsuccessful nerve blocks so here's to hoping this one works. To be honest, they didn't put much thought into deciding to give it to me so I'm not too optimistic. Lupron hasn't worked so I suppose I should be happy that this doesn't appear to be a reproductive problem. It doesn't change the fact that when we start a family is no longer in our hands.


WE are in charge of our health. WE have to make the informed decisions when Dr.'s give us our options. It's OUR bodies, and, it's ultimately up to us. I work with Dr.'s everyday, and, I don't trust all of them either ;) You sometimes DO know what is best. Experience is HUGE with illness; especially chronic illnesses. You HAVE to be informed as you possibly can. The more in tune you are with yourself, the more a great Dr. can help. GREAT Dr.'s are the ones that not only know their sh*t, but, they can relay the information to the patient and LISTEN! :)
ReplyDeleteI think it's hard for me too being IN the medical field. I just expect more. Sometimes we are in the vunverable position of where we have to trust the Dr...then we just have to trust their education background and experience.
I hope all goes well Friday!
Having had 2 nerve blocks followed by nerve cutting surgery (the genitofemoral nerve and the lateral femoral nerve), I feel obligated to give you a heads up.
ReplyDeleteThis last resort nerve-cutting surgery was supposed to end my groin pain of 4+ years (from a suspected entrapped nerve since inguinal hernia had already been ruled out during a surgery).
Anyway, the nerve-cutting surgery did NOT go as planned. I went on to develop phantom pain.
This was the most severe pain ever (possibly tied with just one other thing for 1st place) that I have had in my entire life.
So, be aware that nerve cutting is serious business.
Hope this info helps.
Jeanne
P.S. Ditto to the previous comment!