So, we move on to a lap appendectomy and open hysterectomy. I had grave misgivings about the open hysterectomy, but the doc talked me into it saying that he couldn't get to all the places where endo might be hiding if he used the scope. Three months later, I was back in the hospital having 18" of colon resected due to adhesions. They had also reformed all over the old gallbladder surgery site. Within 2 months, I'm partially obstructed again, throwing up, in pain, the usual drill. The surgeon who did the resection surgery refused to go back in. Fair enough. Thankfully my gastro doc took the trouble to help me find a surgeon who would take a peek. Sure enough. More adhesions in the lower pelvis, but curiously, the anastamosis was untouched.
Six months later, the symptoms slowly started showing up again and very gradually worsened. Last June the intermittent vomiting started up again and the missing of work and the laying around on the couch afraid to move, eating only liquids.... the usual routine. The week before Christmas I finally tanked and couldn't go to work. It practically took an act of Congress to get one doctor to sign the papers for my short-term disability coverage. Pain meds were simply refused. The three surgeons I consulted flatly refused to help - one even treated me to a 10-minute lecture on tort reform. Good thing he tipped his hand to the lawsuit he was involved in, eh?
The whole problem boiled down to the fact that adhesions are an invisible disease. If they don't show up on a test (which they don't)docs are extremely loathe to write it down on a piece of paper or act on it. If it doesn't have an ICD-9 code, the condition doesn't exist to insurance companies.
I finally decided that if I had to see every freakin surgeon in Houston to get these adhesions taken down again, I'd do it. That was my mission. Pain management was a joke and nothing, not even zofran, was touching the nausea and vomiting. Big surprise. I lost 18 pounds from Dec. 15 to Feb. 11 since I could only eat small amounts of liquids about 4 hours apart. And the docs either just shrugged and said nothing, told me it was all in my head and I needed a shrink, or accused me of being a drug seeker and worse.
Long story shortened - the surgeon who did the initial gallbladder and appendix surgery came back on my insurance and I went to see him. He had me on the table the next day. Once again, it was adhesions at the old gallbladder surgery site wrapped all over my liver and small intestines. The nausea was gone as soon as I woke up from the surgery and never came back. I was a little concerned about the remaining pain, but it is slowly receding and I don't need any more narcotics to control it. Suspect that the pain receptors were in the "on" position for so long, they're having trouble getting used to being off.
In any event, I can live with the little pain I have now and I'm tremendously happy with the surgery. The good news is that nothing is going on in the lower pelvis. Crossing my fingers it stays that way.
Had I not had the surgery, I would have lost my job, lost my insurance coverage, disability coverage would not have paid, and I was slowly on my way to losing my life through starvation. NOBODY IN THE MEDICAL PROFESSION WOULD LISTEN!! At least, until I hooked back up with my old surgeon again. :-) At least he is willing to go back in again if and when I become totally desperate again. I'm sure many of you know just how much of a load off my mind it is to have a doctor that will not give me a bunch of BS if I have to go through this again. Fine, I'll do the gastro work; I'll try the pain management; but when it gets to the point that I'm throwing up several times a day whether I eat or not, enough is enough.
My message is this: do not give up. Go outside your insurance after you've exhausted every doc in it. You do not have to take some idiot, do-nothing, worthless "doctor's" word that nothing can be done.
Wishing everyone pain-free days and the courage and strength to face the ones that aren't.
Jen