Nancy Petersen; Published on December 19, 2019
Things that make me shake my head and heard every day in Nancy’s Nook, now approaching 96,000 international members, growing between 800-1100 a week having failed all gynecology has to offer, including most of the common recommendations below:
-Have a baby, it will cure your endometriosis, have another baby as you weren’t pregnant long enough (nope, pregnancy has no impact on endometriosis). I actually worked with a woman who was a CEO of a major corporation in devastating pain from endo, single but followed the pregnancy advice, twice. She found her self single with two toddlers, in agonizing pain trying to ride herd on a large corporation. She was pretty disillusioned. She did manage to find a skilled excision surgeon and relief, and as much as she loved her kids, this was not the timing she had planned for a family but she trusted gynecology to guide her. Unfortunately.
-Remove your ovaries, or uterus or both to treat endo (nope, endo makes its own estrogen, healthy uterus and ovaries should be left alone)
-Go into chemical menopause for a cure (nope, doesn’t even stop the progression of your disease while you are on meds but puts you in low estrogen states creating risk for small vessel heart disease, bone loss, permanent bone pain, cognitive injury. These risks get pushed on down the patients’ life span where no one currently has to assume any responsibility for, most of the time not even discussing the risks)
-Take this pill, shot, or IUD we don’t need to do a laparoscopy to determine if you have endo (nope, sloppy way to try to diagnose and it is not a confirmation of disease, rather a laparoscopy done with adequate expertise will result in diagnosis and treatment)
-Endometriosis of the bowel is inoperable (red flag for a surgeon who does not have the skills, certifications or other team members to deal with it effectively)
-Period pain, fainting, pallor, nausea, vomiting, bowel pain, constipation, diarrhea are a normal part of having a period (nope, get a better doctor)
-We just burn the lesions off. (nope, ablation or other terms that mean burning lead to incomplete destruction of disease and continued pain as high as 80% of the time)
-Irritable bowel, painful bladder, and collapsed lung have nothing to do with endo (nope, all can be part of the picture, and require far more expertise than general gynecology to resolve)
-My doctor does not want to do a laparoscopy, believes it always comes back (nope, red flag for a physician not trained in the surgical resolution of endometriosis )
-My doctor left some of the more difficult areas of disease and plans to have me clean it up with medication. (nope, drugs do not treat endo, they are a temporary bandaid, and disease can continue to progress while you are on the drugs even if symptoms are quieter)
Just a few of the things we hear every day that are false, misleading and unlikely to be helpful but told to many of the 85,000 members of Nancy’s Nook (still growing at the rate of 600-800 a week who have failed all gynecology has to offer except expert excision of the disease). We can do better, and we owe patients more than this. FMIGS training, mentoring, coaching through surgeries, dedicated team members all improve long term outcomes. First, do no harm, second learn what is needed to help these patients.
And one final thought, we need to close the feedback loops:
Patients in Thunder Bay Ont taught me a valuable lesson 30 years ago. I was giving a talk there and we took a break about halfway through the presentation. During the break, 3 doctors came up to me at the podium while I was reviewing my notes. They pointed out I was wasting my time there as they were curing patients. When I asked how they were achieving that, they told me by using triple dose danazol. Then they left. When the meeting resumed, the room was full of raised hands, so I called on someone who asked the question apparently on everyone’s mind. “What did the doctors say to you?” I told them, that they had told me I was wasting my time here and they were curing endo with danazol and I wondered aloud why they would believe that? The room erupted with “Because we don’t go back.” So you will often see me now suggest that you send a low key note back to previous doctors with thanks for your help, and I thought you might be interested in these reports (operative, pathology, and discharge summary). Low key because we want them to read the reports, not set them aside in anger. It is critical as patients that we close the information loop, just critical.
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