Endometriosis diagnosis & treatment nightmare

Sophia writes:

I carry my weight very well. So well, in fact, that nurses often weigh me twice, and most doctors don’t comment on my weight until they sit back and look at my chart. I was a competitive athlete growing up, and although I am certainly overweight now, I still retain much muscle mass especially in my thighs. I am tall for a woman and even at my thinnest have never dipped below a 14/16 (and I was almost unhealthily thin at that point, subsisting on diet coke and cigarettes).
Toward the middle of ’06 I began experience constant pain. Endometriosis had been bandied around as a possible diagnosis since i was 14, and I had been on hormonal birth control almost continuously since then. My mother had endometriosis, and so did many of her female relatives. I searched high and low, and finally found a specialist (a Reproductive Endocrinologist) who supposedly had experience in treating endometriosis in my area. There were not many, and he was the only one who would treat me for the medical condition, not for the infertility aspect.
The initial interview was horrible. Right from the start he told my husband and I we shouldn’t think of children yet, that we were too young and should be out of school (as if that’s his business at all). He took one look at the weight on my chart and said that my pain was probably psychosomatic and/or caused by my weight and that I was more than likely too fat to conceive naturally anyway. After I was nearly in tears, my very typically cool-headed husband told the doctor heatedly that he had lived with me for a good deal of time and that I was in so much pain daily that I could hardly function. Of course I had gained weight, my husband pointed out, I had been hardly able to leave the house for months. Finally the doctor agreed to take an ultrasound. I lay on the table holding my husband’s hand silently gagging from the pain. Only then did the doctor look down and say “does this hurt?” like I was some freak. I hardly croaked out a “yes”. The doctor looked sternly at me, then left the room for me to get dressed.
When we met him in the hallway, he said he was ordering a laparascopic surgery to examine my insides. He was ‘piggy backing’ me onto another surgery, and told me he would ‘order a laser just in case’ but he ‘doubted it would be used’. He told me again I needed to lose weight and see a shrink.
A month later I had the surgery. What should have been a 30 minute procedure stretched 5 times that length, much closer to 2 1/2 hours. My uterus was covered with spots, and the photographs he took looked like someone had taken a lit cigarette to my insides. Upon research, he only made 2 incisions, instead of the typical three, and never checked my other internal organs beside my uterus/ovaries. While I was in the post-op recovery room, the doctor came out to speak with my husband and my mother. He flat out told them the surgery was much more difficult because he had to work through ‘layers of fat’. He told my husband I was severely overweight, and the ‘amount’ of endometriosis he found was not enough to be causing the pain i was in (which goes against all current research on the condition). My husband almost punched him right there in the hospital. It was obvious he was trying to cover up his previous insensitivity and disbelief. It was obvious i had this disease, and he didn’t even have enough time or care to treat me fully.
I have not gone back to this doctor. My GP and my last ob/gyn were and are immensely supportive of my health, overweight or not. They are both convinced my weight struggle is related to a hormone imbalance from my endometriosis, combined with the difficulty I have in staying physically active. I know they would like me to lose some weight, but mostly manage my hypoglycemia and get some cardio worked into my life. They never push or are mean about it. I told them both what the surgeon said, and neither could believe or agree with what he put me through.
The absolute worst part is that this doctor trains Reproductive Endocrinologists at my local medical university. I hope they learn more compassion and better bedside manner than he ever imparted. The best part of all of this? The guy had to be 250 lbs himself, easily.

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5 Comments

  1. Bronxgirl1

     /  July 2, 2009

    I hope you sue that bastard. Some doctors don’t realize that treatment like that is what prevents some people for seeking follow up treatment when they need it most.

    Reply
  2. Contact the university and tell them about your experience, and that you are concerned that he is setting their students up for malpractice later down the road.

    Reply
  3. Lily

     /  July 2, 2009

    Please, please, please contact the university. They need to know that they are possibly sending abusive doctors out into the world.

    Your situation is more common than the AMA is currently ready to deal with and there need to be COMPETENT doctors trained to work patients like you (and me).

    Thank you for sharing this story with us, and I hope it gets into the hands of people that could actually change the situation for others.

    I hope that there is at least a complaint filed with his superiors also, because if you get worse because he acted like a pissy little brat instead of a person toward you, they may be sued.

    And I hope you feel much better, and that the awful parts of this experience fade quickly. You deserve much better.

    p.s. I have this daydream where I reach over and pinch a doctor’s pudge and say “oh yeah?” to whatever weight judging he’s doing, but so far I’m always shocked that medical personnel is so badly informed that I just blink at them and move on to the next topic.

    Reply
  4. O.C.

     /  July 2, 2009

    I agree with the suggestion about contacting the medical school. Filing a complaint about the doctor’s treatment of you isn’t likely to accomplish much, but you might be able to make a difference in the training of many future doctors. Please try, if you can.

    I’ve been through a very similar situation with undiagnosed endometriosis going on for too long, so I’m sending you good thoughts and sympathy.

    Reply
  5. Anon

     /  July 2, 2009

    I’m so sorry to hear this. I myself have been diagnosed with endometriosis and had a laproscopy to find and remove the lesions. My doctor informed me that it was standard to examine not only the uterus, etc but also check the bladder, colon, etc as the endometriosis can grow and cause symptoms like bladder infections, constipation etc when the organs get ‘stuck together’ from the growths. He also informed me that it was widely accepted that there is no correlation between amount or placement of growths and pain frequency or level. I would like to believe I just have a wonderful doctor, but who knows, maybe the fact that i am naturally very thin played a role in my quick, thorough, and compassionate treatment.

    Reply

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