I am an ovarian cancer survivor. I am late stage, which the majority of us are. I wake up every day and remember, in an instant, that I am living with a 85% recurrence rate, that my cancer is viewed as a “chronic” condition, that it is only a matter or time…
And I’m mad. I’m mad because I had all of the classic symptoms yet had no idea there was something wrong. I’m mad because even when I went to my female doctor with all of the classic symptoms, she had no idea.
I’m mad because women are given really bad information. We are told we can’t trust our instincts because of our hormones. We are told we need to ignore terrible physical issues because we are “of age”. We are told that bloating, weight gain, issues with our bowels or bladder are “normal”. We are told that we are “over reacting”, succumbing to “PMS”, experiencing peri-menopause.
We are told all of this by Doctor’s who seem to care, so we believe them. We leave their office believing we are physically fine, but a mental nut case. We put together our symptoms and our Doctors words and come to the conclusion that we are wrong; we simply don’t understand our bodies.
Here are some hard, cold facts that we all need to know.
1. Doctors don’t know everything. Medicine is a “practice”. Having spent 2 years speaking with medical students I have learned a fact women need to understand: Medical students are taught to down play symptoms. They are taught the phrase “when you hear hoof beats, think of horses, not zebras”. They are taught that since some conditions are less frequent they should be automatically ruled out. If you present to your Doctor with classic symptoms of ovarian cancer he/she has been taught to pat you on the head, assure you that you are fine and advise you to drink more water and eat more fiber. This is a FACT.
2. Much of what Doctor’s say and do is dictated by insurance companies. The tests for ovarian cancer are readily available, non-invasive and inexpensive. None the less, medical students are taught not to order these tests.
3. Our culture reinforces the idea that we are hysterical. We are unreliable. We are hormonally driven and, as a result, damaged. We are taught to accept pain, discomfort, odd symptoms, because we are “women”.
4. There are medical personnel that do not buy into these myths. They charge out of pocket, they are booked solid and they are the only professionals we should be seeing.
I saw one of these professionals in my mid twenties. I had severe pain during ovulation. All the other Doctors dismissed me. I was imaging this, I had no idea what I was talking about, there was no medical reason for this. I brought this up during my appointment with this nurse practitioner and she giggled. Literally. It turns out there is a medical explanation for this pain, I am not the only one and it can be a precursor to other issues. I left her office feeling relieved yet angry. Why had I been dismissed for years? Why had all other Doctors told me this was my imagination?
5. People like her can not stay in practice. Insurance companies have ensured that only MD’s, or DO’s, can treat patients. Without insurance reimbursement it is really hard for a practitioner to continue their practice. I can’t help wondering if my cancer would have been diagnosed earlier had she continued to practice.
6. Our medical system does not understand women. Most of the research is done on men. There is little research done on women. Even female Doctors are limited because of this. A doctor can only diagnose what they understand, and they do not understand women. Women are complex. Much more complex than men. This makes us difficult, but not impossible, to understand.
If you remember nothing else, remember these facts:
1 – Ovarian cancer can strike at any age. There are cases of 8 year olds as well as 95 year olds. You are not immune.
2 – Ovarian cancer is deadly for 1 reason: it is not diagnosed in time. Why? All of the reasons I listed play a part.
3 – There are 2 tests that can detect ovarian cancer early. A vaginal ultrasound, coupled with a CA 125 test can detect this cancer at an early stage. These tests are inexpensive, easy for women and highly effective. When diagnosed at stage 1 there is a 95% survival rate. Without these tests, most women are diagnosed at stage 3 or 4, with a much lower survival rate.
4 – There are symptoms! It is not the silent whisperer as it is called. Symptoms include:
change in bowels
bloating lasting 2 weeks
low grade fevers
pelvic and/or back pain
Does this sound silent to you?
5- Remember,at all times, doctors are dependent on insurance, and insurance companies want to make money. Insist. Make sure your Doctor is listening to you and taking you seriously. If you are worried about standing up for yourself, bring someone with you. It is always easier for a different person to stand up for you.
6 – Your pelvis is not your enemy!! Your pelvis is amazing! Your pelvis keeps our species alive. Without your pelvis our species would disappear. And despite what you are told you know when something is wrong.
PS: I wrote this for a yoga teacher who is trying to open the dialogue among women about our pelvis. Share if you want to join the conversation. It is up to us to change the system.