Pelvic pain? No, it’s back pain caused by your fat.

OptimistiCynic writes:

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.

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16 Comments

  1. Kaz

     /  June 7, 2009

    I am so sorry you had to go through this. Total ignorance of womens’ reproductive health issues is rampant in the healthcare system. Between the fat prejudice and the fact that so many doctors wouldn’t know a case of endo if it was dancing around the room waving a flag, way too many people are ending up in your situation.

    Reply
  2. These doctors about both criminally negligent and criminally stupid. I’m so sorry you’ve had to go through this nightmare.

    I suffer a lot of chronic pain. I’ve tried to have something done about it, and no one listens. I’ve done meds, PT, acupuncture, massage, yoga, the works. If I go in now, they will just blame it on my weight. I happen to know that I have underlying orthopedic problems, but no one cares to actually do the work-up. I think this is true of the medical industry in general–no one listens; and if you’re fat, they just talk over you even more.

    Reply
  3. Emma

     /  June 7, 2009

    I’m unsure as to why you were led to believe that losing a fallopian tube and an ovary halves your fertility, but it may make you feel better to learn that is not true. Your other ovary and fallopian tube will kick in and make up for the loss. In other words, you will ovulate off the same ovary each month now. Nature is cool that way, and makes many vital organs in duplicate to protect us.

    Reply
  4. Jennifer

     /  June 7, 2009

    Those 2 doctors deserve to be brought to court for malpractice and have their licenses taken away. No f**king excuse for what they did. I hope at least someone prints this out and shoves it in their faces.

    Reply
  5. That is so, so terrible! And they wonder why fat people have so many health problems!! It would help if doctors would actually deign to TREAT us.

    I’m sorry you went through this experience, and I hope that your recovery went well. ^_^

    Reply
  6. O.C.

     /  June 7, 2009

    Thank you, everyone, for your comments. I should add as followup that I did write to both of the primary car doctors, telling them about their missed diagnosis and the consequences. I didn’t hear back from the first doctor, but I did get a letter back from the second doctor. She admitted no culpability, and I’m not surprised. But she did indicate that she’d looked back at my records before writing, and spoke of how endometriosis is hard to diagnose. She did apologize for giving me the impression that she’d been focused on my body size. I didn’t expect her to apologize really, not in our litigious society. But I’m glad to know she took the time to look back at my records and think about them. I hope that that made a difference.

    Emma, I hope you’re right about the other ovary going into overdrive! But I wonder how the first ovary would “know” that the fallopian tube on that side was screwed up, and decide not to ovulate?

    Reply
    • Emma B

       /  June 8, 2009

      Your other ovary “knows” because of the way the hormone levels provide feedback. Assuming your hypothalamus/pituitary gland is functioning properly, the brain will keep pumping out FSH, which causes ovaries to produce follicles, until an ovary starts producing estrogen as part of the ovulation process. That’s why you usually ovulate from only one ovary, because that ovulation shuts off the other ovary’s stimulation (although sometimes you do ovulate twice, which is how fraternal twins happen). In your case, the remaining ovary will produce every month, because the other ovary can’t take over and shut it down.

      Endo is hard on the reproductive system in other ways. If you’re interested in having children, you may want to consider finding a good reproductive endocrinologist in the near future. An RE can help you manage your endo as well as evaluate your fertility potential. OB/GYNs are good at delivering babies and providing general gyn care, but they often do not give the best advice on either endo or infertility treatment.

      I’m sorry you’ve been through this. Doctors are terrible at diagnosing endo in general, even in the thin population — I went through that myself, and I’m sure it would have been much worse if I’d had a convenient excuse like fat.

      Reply
  7. Alexandra Lynch

     /  June 8, 2009

    I have always wondered why the hell no one said to me in 2004 when I had a kidney infection and went to the ER in massive amounts of pain that incidentally if you are using birth control pills for birth control that you need to use a backup method while on this antibiotic. Despite the fact that I was 27, had been pregnant before, and was married, and one might presume therefore sexually active.

    It was, perhaps, the fatz. Cause we all know fat girls don’t have sex lives. (rolls eyes)

    And yes, I got pregnant.

    Reply
  8. Please tell me you’re either suing, or reporting these two to the medical board for malpractice!?

    Reply
  9. Renee

     /  June 8, 2009

    I cannot believe those doctors, and I am so sorry you had to go through this. Maybe you could write a letter to each of those doctors and tell them what the outcome of their fat prejudice was. A friend of mine, also fat, did that and actually got a letter of apology from the doctor. Hopefully they will learn from their mistakes and think twice before they ignore fat people’s complaints of pain. There is NO EXCUSE for this kind of behavior from a medical professional. NO EXCUSE!

    It sounds like you have found a good OB/GYN though.

    Reply
  10. angrygrayrainbows

     /  June 8, 2009

    It is a sad, sad shame that medical professionals could behave in such a way! I wonder if they’d remain so willfully ignorant about fat if some folks SUED them for their attrocious behavior.
    The bright side of this story if you, Vesta. How much bravery you have to keep on believing in yourself and trying out docs until you found one who would LISTEN. Those docs should be penalized for that crap they and their staff put you through though….

    Reply
  11. Amananta

     /  June 8, 2009

    OMg, sorry to sound so netspeaky, but this – the beginning part – has totally happened to me. I am fat and have pain on one side, sometimes very bad, when I ovulate. I have yet to have a doctor believe me or care. I actually was taken to the emergency room twice with pain from this, both times I had a cyst on my ovary but I am told “ovarian cysts don’t cause pain like this, the cyst ios very small.” I tried to talk to my doctor about it and she hemmed and hawed a lot then sent me for an MRI. “What is the MRI for?” I asked. She said she had a suspiscion but didn’t wasnt to tell me. The MRI people, not knowing this was supposed to be a secret, told me she was doing an MRI of my back, because stupid me, I said, when I descirbed the pain, that sometimes it radiated down my leg or into my back. Now I do have tailbone pain too, and the mri found a herniated disk. but she decided that this wasn’t a problem either and couldn’t be causing my oain, and sent me to… physical therapy. So there I sat taking physical therapy for a month, feeling kind of dumb, and the next time ovulation came around… I had deep pelvic pain on one side again.
    I have not been back to the doctor since. What’s the point?
    That was 4 years ago.

    Reply
  12. Beeje

     /  June 8, 2009

    How many ways can you spell L A W S U I T?
    Call a lawyer. Sue the first doc who told you the catscan was normal. It wasn’t. He lied.
    Sue the second for failing to diagnose and treat you. Your loss is your fertility.

    Reply
  13. alisonsideways

     /  June 10, 2009

    I am sorry about your medical problems and the difficulties with the medical profession. I had a close friend who sued after malpractice (which resulted in her having a baby die in labour AND a hysterectomy), and while her only motivation was to get the staff to realise what they had done, she bitterly regretted doing it. It put her through far more anguish and didn’t get her any further than you’ve managed with doctor number 2 already, plus it stopped her moving on mentally.
    If you are 41 and have endometriosis, and seriously would like children, I would suggest you act sooner rather than later. You are at the age when your fertility is likely to reduce sharply. I am 44, and my cycles now are very different from what they were 3 years ago. But I am sure your ob/gyn can advise you on this. Best wishes.

    Reply
  14. Tracey

     /  June 11, 2009

    I am so sorry to read your story. 😦 But let me echo the suggestion that your fertility may not be terribly compromised. I too lost a fallopian tube. I also have a high pain tolerance and by the time my mother finally took me to the ER at age 14 my appendix had already ruptured, infecting the tube on that side. I now have two kids and both were easily conceived. Please don’t lose hope!

    Reply
  15. Casey

     /  July 27, 2009

    Oh, O.C I feel your pain. Literally. It took me three surgeries, all counted, to get my diagnosis of endometriosis. And the worst part is that I KNEW what I HAD because it’s hereditary to a certain extent and my mother has it.

    It didn’t seem to make an impact on the first Gyne that all those massive adhesions he found in my gut when he opened up were probably scarring from all that endometriosis. The second time they opened me up, after a severe attack of endo pain before me monthlies, they took out my appendix because they just couldn’t understand.

    A year later I flew interstate to see an endometriosis specialist who listened to my symptoms and said, immediately, ‘that’s endo. Oh, you might have PCOS too, that would explain your weight, there’s some tests we can do if you want’.

    What a WONDERFUL doctor.

    Reply

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