About five years ago I developed a pain that felt like a low level menstrual cramp all the time, deep inside my pelvis. It didn’t vary over the course of the month, or with movement. I put off seeing a doctor for awhile, because I have a high pain tolerance, and because I knew I’d be told to wait to see if it changed. When it didn’t, I went to see my primary care doctor. I told him about my high pain tolerance, that I have a history of medical problems progressing too far before they’re diagnosed because when other people would be in screaming pain I am not.
He agreed to refer me for a CT scan, and said that if the scan wasn’t helpful he’d send me for a colonoscopy. But then he started talking about how he would like to prescribe Byetta, an injectable medication for diabetics, to treat the body fat that had resulted from my metabolic syndrome. I said that I do not have metabolic syndrome. Well, he said, it would help with weight loss because it has an appetite surpressant effect. I don’t overeat, or have metabolic syndrome, I said, so why would I want to do that? He had no answer. He ordered the CT scan and some bloodwork (which I could tell would relate to whether I had metabolic syndrome or not) and said we would talk after the CT scan.
Several weeks later I got a call from his nurse. The CT results showed nothing, she said, and my bloodwork was normal. (So much for the metabolic syndrome!) I asked about the colonoscopy. No, she said, the doctor wouldn’t order that until I got physical therapy for my back pain. I don’t have back pain, I said. I have pelvic pain. Well, she said, we need you to go to physical therapy first and then we’ll talk.
I could tell that I wasn’t being heard, because the doctor and nurse had reversed course on the need for a colonoscopy, but more importantly I could tell that the doctor in particular was focusing on my fat, and misdiagnosing me with other problems like overeating and metabolic sydrome because of it, rather than helping me with my pelvic pain.
I found anther primary care physician, and took my CT scan results with me. I then saw that the results had NOT been normal, but instead had recommended a colonoscopy to check up on a shadow that had appeared on the scan! My first doctor and his nurse had lied to me about the results.
My new doctor, in our first meeting, led me through a thorough discussion of my medical history which included asking about my mental health. At the time I was very lonely, living in a very isolated place, and when she asked me about my social relationships I started to weep, because at the time I had none. We talked about this for a few minutes, and then, briskly, she asked, well, what are we going to do about your weight? You need to lose at least 100 pounds. I was taken aback. The timing of her question seemed to imply that the reason I had no friends was because I was fat! Even if she hadn’t intended that implication, her timing was awful.
I said that I had spent my entire life dieting and had researched the medical evidence for and against it, and would no longer pursue behaviors that weren’t helpful. As it was, I’d lost about 10% of my body weight over the last year through no deliberate effort, and wasn’t that supposedly associated with improved health outcomes? Her response was that if I’d lost 10% then I could lose another 10%! And where would that end, I wondered?
She got defensive and argued with me that she knew plenty of patients who had reset their bodies set points with diet and exercise! They’d lost hundreds of pounds and kept it off! I sure hope she publishes that evidence in a medical journal because her patients are apparently completely different from any other population in the world! But I didn’t think quickly enough to say that to her. As it is I was proud to be able to snap out of my weeping and into standing up for myself as quickly as I was. Though it was wrong that I should have had to do this, particularly since my fat was NOT why I was seeing her! She did order the colonoscopy, which came back clean.
In my followup with her after the colonoscopy I could tell that she was treating me with disdain. Her tone of voice was brittle and clipped. She didn’t seem to want to touch me. She had me bend and stretch, and she manipulated my legs and back, all of which I told her had no effect on my pain, which by now had gotten worse. Well, she said with disgust in her voice, this must be back pain because of your weight. It’s NOT back pain, I said, it’s pelvic pain. Well, whatever, she said, there’s nothing more I can do.
I didn’t trust her anymore anyway, but I couldn’t believe that I’d now gone through a second doctor who only saw my fat, and couldn’t work with me to diagnose the problem I’d come with.
By the time about a year had passed I was starting to get new symptoms, abdominal bloating and cramping that I’d never had before. I researched it online and found that my symptoms matched up with ovarian cancer! It was completely believable to me that I could have had undiagnosed ovarian cancer all along, with doctors unable to see it because they were distracted by my fat. I talked to a friend, who told me I had to go see my OB/GYN right now! He was right, and I did. I went to the OB/GYN’s office and flipped out crying in the lobby, begging to be seen, sure in my heart that something was seriously wrong and that nobody believed me.
The OB/GYN did take me seriously, and though I could tell he wasn’t completely convinced of the need for it, ordered a exploratory laproscopic surgery (after a vaginal ultrasound showed nothing). When he went in, he found one of the worst cases of endometriosis he’d ever seen. The leisions covered the inside of my entire pelvic area, and had adhered one of my fallopian tubes to an ovary, effectively halving my fertility. He treated as much of it as he could during the surgery. When I’d woken up and we talked, he told me that he was surprised I’d been able to stand the pain that the endometriosis must have caused! I told him AGAIN that I have a high pain tolerance, and was frustrated that once again, because doctors hadn’t listened when I’d told them that, I’d had a medical condition progress much further than it needed to.
There are so many reasons that I’m angry about my treatment throughout this episode. First, my two primary care physicians saw me only as a recalcitrant fat woman, and only made cursory attempts to diagnose my pain as anything other than a side effect of my fat. Endometriosis has no association with body size at all.
Second, if I’d believed the doctor who prescribed 100 pounds of weight loss, my diagnosis would have been delayed even longer, assuming that I even could lose 100 pounds!
Third, my fertility has been significantly damaged by the delay in my diagnosis and treatment. I’ve seen studies that claim that obesity diminishes fertility, and I know that in my case that is absolutely true, though not for the reasons that fat-phobic doctors would assume. Prejudice about my fat kept my doctors from treating me effectively, delayed my treatment, and gave my endometriosis time to damage my reproductive system significantly. Yes, my fertility was damaged by my obesity, or rather it was damaged by my doctors’ prejudice against my obesity.
I have a lot of anger about this episode. I am already at an advanced age to try to have a family, 41, and the difference between having a healthy reproductive system and a damaged one may very likely make the difference in my ever being able to have children or not. If I ever try to have children and fail I will know that doctors’ fat prejudice is very much to blame.