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1) At 22, in 1991, I spent a week in the hospital recovering from a massive hemorrhage from my uterus. The docs discovered that I had no progesterone, & an over-abundance of estrogen. I was put on the pill, not to regulate my cycle, but to establish one.
2) I was told that I would likely never be able to get pregnant, but if I did, I w/n be able to carry to term successfully. But when I begged them to do a hysterectomy, they said no, on the grounds that "You might want to have children," despite the literally impossibility.
3) The overage of estrogen made me a cancer risk; for 3 yrs, they did follow-up testing, but then stopped. For the past 7 yrs, I complained of fatigue, bordering on exhaustion. The doctors refused to run any tests.
4) I was told it was stress-related, and I should learn to manage my stress, or get a different job (I'm an attorney). In Dec 2016, I had routine tests to rule out rheumatic illnesses (which tend to run in my family), and was diagnosed w/MGUS (low-stage bone marrow cancer...
5) which doesn't require treatment, just monitoring), and all of my symptoms were then chalked up to that - they looked no further. During that 6-year time, I had no periods, and it was assumed that I had gone through early menopause (but again, no tests were run).
6) In Mar 2018, I had a 30-pound benign tumor removed from my left thigh. In Apr 2018, I started noticing a painful swelling of my clitoris, but when I told one of the wound care nurses, it was blown off as "likely somehow related to the surgery, it'll pass." It didn't pass.
7) It got worse. By the time I got into the OBGYN, it was excruciating. She took 1 look at it, and recognized it as cancer. She took a biopsy & 3 days later, I was in the oncologist's office, being told I had Stage 4 endometrial adenocarcinoma - uterine cancer that had spread.
8) Turned out, I had 3 tumors. One was essentially my entire uterus, the 2d was floating in the space between my cervix and bladder (and the initial MRI couldn't tell whether or not it had invaded the bladder), and the 3d was covering the exterior of my clitoris.
9) I had 7 mos of chemotherapy, including 6 blood transfusions, loss of eyelashes, eyebrows, and my hair. The chemo got rid of the "floating" tumor, and vastly reduced the other 2. Then I had a (surprise) radical hysterectomy and clitoral resection.
10) The pathology report showed no cancer in my ovaries or fallopian tubes, but they were so covered with "fibroid adhesions" that, even w/o the cancer, I would never have been able to have children.
11) I then had 7 more weeks of "security blanket" chemo to make sure it c/n come back, as the pathology report showed a few scattered cells remained in the clitoral tissue.
12) If they had just done the hysterectomy when I had the hemorrhage at 22, the cancer would never have been an issue. If they hadn't blown me off when I complained of fatigue, the uterine tumor might have been found earlier and not spread.
13) For 6 yrs, my ONLY symptom was fatigue. But I knew. You know your body better than anyone else. Don't ever let them blow you off when you say something feels wrong.
14) And by the way - all of my doctors were female. Women doctors blow women patients off, too. It's not just male doctors. They seem to be afraid of running tests, probably because of insurance company rules.
15) I have experienced first hand how broken our health care system is. That is why I am planning to run for Congress.
16) I think the more people on the Hill who are impervious to the lobbying efforts of the pharmaceutical, insurance, and medical industries, because we've LIVED THE PROBLEMS, the better.
17) I am now 100% cancer-free, as of 2 weeks ago. I'm one of the lucky ones. Many cannot afford treatment, or simply can't get a diagnosis in time. This must stop.
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