Hey folks,
Thanks for all the comments and emails this week, I really appreciate the support. Boy Howdy have I needed it.
[deep breath]
OK, here’s the story. Remember how much I hated Dr. I’mnotlooking after my first visit because he kind of alluded to the fact that I might be making up the pain because I was crazy?
Yeah. It got worse.
Dr. I’mnotlooking came to see me just as I was waking up from the anesthesia, when I was still in that point where I could hear what was going on but I couldn’t move or speak or open my eyes. And this is how he welcomes me back, “Good news Tresa! We didn’t find any endo, you are clean as a whistle.”
GOOD NEWS?? GOOD FREAKING NEWS???
He ran off and I start bawling. I wasn’t awake enough to speak, but my tear ducts worked just fine. My sweet nurse Jill was trying to find out what was wrong and I slowly slurred out an explanation that this was most certainly not good news.
If they found absolutely no endo, then that means they removed no endo. Which means all my pain and all my symptoms are staying with me. With no end in sight. This also makes me look like a psycho hypochondriac and Dr. I’mnotlooking think that he was right all along. And since I’ve had to beg and plead for every prescription and treatment I’ve gotten so far, now it’s going to be nearly impossible for him to take my pain seriously. And of course, no end in sight.
Then I started doubting myself. Maybe it was all in my head. Maybe after my first diagnosis and initial lap I just convinced myself I was hurting because I felt like it was supposed to. Maybe I’m nuts. Maybe I need attention. Maybe I don’t want to get a real job so I made something up. Maybe Bear would be mad at me for everything I made him do for me – bathing and fetching and supporting my lazy butt – all for nothing.
I was pretty much inconsolable.
Once I was a little more coherent I asked sweet nurse Jill to get Dr. I’mnotlooking so I could talk to him again. Maybe in my drug induced state I misheard him. Maybe he said that I was clean as a whistle, NOW.
When he finally came back he repeated everything just as I thought I heard it the first time. I asked him what other options there might be to explain this much pain. He said, “Well, I can’t really answer that. I think you need to find yourself a good psychiatrist.”
Then I asked him if we could still continue with a treatment of Lupron as we planned and he said, “I suppose so, I think Lupron is pretty safe and probably won’t hurt you to take it even if nothing’s there.” And then he got out of there as fast as he could.
For those of you unfamiliar with how endometriosis works, or women’s health in general, let me tell you why his behavior was unbelievably craptacular, to the point that, in my opinion, he has no business practicing women’s medicine.
1)Quite frequently, endometrial adhesions are too small to see with the naked eye. This is why they like to follow up surgery with a drug treatment. The Lupron should dry up anything that is invisible. So not seeing anything, ESPECIALLY after a previous diagnosis, doesn’t automatically rule anything out. The really crappy thing is that Dr. I’mnotlooking himself explained this in our last visit.
2)Endometiral adhesions are chameleons. And many doctors just don’t recognize what they’re looking at. In some cases endo has been found on the skin, on the lungs, on the spine. Sometimes they’re bright purple, sometimes they’re bright red, and sometimes they’re the same color as the organ it’s on. A hunt for endo can’t exactly be completed in half an hour, as Dr. I’mnotlooking tried to do.
3)The symptoms one woman experiences with endo are going to be entirely different from the symptoms another woman experiences, and those symptoms are not at all linked to the degree of their disease. It’s just like having babies. Some women can crank out a 10 pounder unmedicated, and others climb the walls with a 5 pound baby. Everyone tolerates pain differently, our immune systems are all different, the disease effects us all differently.
4)Doctor’s know next to nothing about this disease. They can’t even agree on what causes it much less a treatment or understanding of how it works. The experts who research this for a living admit that everything is up in the air about this and whatever a woman says she’s feeling, that’s how endo works.
5)Doctor’s know very little about women’s health in general because until very recently there was no urgency to study it. There weren’t many women doctors or female politicians pushing for attention, and it was too convenient to pat a woman on the head and chock it up to “hysteria”. Notice how similar the words hysterectomy and hysteria are? There’s a reason for that.
While chronic illness and infertility is extremely stressful and I have no doubt a psychologist would help me, it’s CERTAINLY not going to replace proper medical treatment, which is exactly what Dr. I’mnotlooking is suggesting. He’s implying that I’m crazy and have no medical reason to feel what I’m feeling and that just could not be more wrong. I do believe in a mind body connection and I’m sure he’s seen this before. It’s apparently very common in victims of rape and incest. But considering that he’s never once asked me a question about my history, he has no business suggesting this. Telling me this pain is in my head should be an absolute last resort, not something brought up on our first visit and certainly not just as I’m waking up from surgery. It’s terribly sad when the patient is more educated about her disease than her own doctor is.
My post-op is scheduled for tomorrow and I have no idea what to say to him. Part of me wants to chew him right the hell out and get a new doctor. Another part of me thinks that he’s not going to listen anyway, so I might as well save my breath and just do what needs to be done to get the Lupron prescription. Starting over with a new doctor at this point could be even more suspicious and who knows how long I’ll be living in pain before someone else will take me seriously. I don’t know. But whatever I decide to do now, you better believe that once I’ve got what I need I’ll be writing his superiors.