What you don't know can hurt you: Knowledge is Power in a Doctor/Patient Relationship

October 7, 2011

I was intimidated from the get-go. I was a 23 year old woman going on her fourth Laparoscopy for endometriosis. I had been experiencing severe pain and abnormal bleeding with and w/o my periods since I was fifteen, diagnosed with endometriosis at eighteen and already had three surgical laparoscopies to remove the endometial growths.

I was intimidated from the get-go. I was a 23 year old woman going on her fourth Laparoscopy for endometriosis. I had been experiencing severe pain and abnormal bleeding with and w/o my periods since I was fifteen, diagnosed with endometriosis at eighteen and already had three surgical laparoscopies to remove the endometial growths. This time the doctor wanted to try a different technique called a LUNA or uterine ablation. This procedure severs the ligaments in the uterus thus reducing pain created by cramping during menstruation. By this time I was having varying degrees of bleeding throughout the month as well as pain that did not correlate with my periods. I thought, "what the heck, maybe the fourth times’ a charm". I didn’t research the fact that LUNA’s are only of considerable benefit to women with pain DIRECTLY associated with their periods. At the time of the surgery I was in pain 75% of the time, and it was NOT only related to what by now had become unbearable menstruation. By the time I was 25 I had two more similar surgeries to relieve pain and abnormal bleeding caused by the regrowth of the endometrial tissue. I inquired on more than one occasion about a hysterectomy but was told by the heroes in white coats that I was either too young, I would regret it, menopause at my age would be ghastly, maybe I should seek therapy and learn to "live" with the pain"(that was a good one!) or that I should, as one of my FORMER GYN’s put it, "Swallow the pain medication and Buck Up". Essentially, I let my doctor be the ringmaster of the circus inside my body. I was intimidated by the number of degrees on his walls and the various snapshots of smiling new mothers and newborns; all having had complete faith in this physician to lead them down the path to a better life. Why should I think any different? I mean, who am I, Jennifer, to question a man who spent half his life learning how to practice medicine? But my gut and my instinct were pulling me in another direction; a direction that saved my life.

Only after seven surgical procedures, years on addictive narcotic medications, high doses of mind altering hormones, ER visits, catheterizations and mental anguish did I learn how to learn about being a patient. After experiencing fear and abandonment along with complete lack of faith in both the field of medicine and the doctors who practice it did I begin my true healing. Essentially, I became my own health advocate, and it changed my life.

Knowledge is power, plain and simple. Whether you are stricken with a life threatening illness or dealing with a persistent problem that affects the quality of your life you must take your health and any problems associated with it and ATTACK it with knowledge. In being your own advocate, it is essential that you approach your provider with sense of self and dignity; a competent individual who is aware of her own body. Your own research on and about the issue at hand is vital as well as your own personal ammunition; use it! As much as your physician would like to be, she/he may not be current on all of the cutting edge research and experimental trials that you may be eligible for. Go to the local University or college and research the medical section. The local hospital will also have up to date periodicals and medical journals that may contain useful information. In doing your own research, you become better able to understand your options. Only then can you make an informed consent on the treatment best suited for you. Utilize your provider as you would a consultant. This will enable a mutually effective exchange and your doctor will not only respect your interest in your own healthcare but respond to it.

It took me ten years of chasing white coats until I sat still enough to see my pattern. Be it intimidation, laziness or apathy, I had no regard for my most precious gift, my health. This is a society where we are inherently trained to entrust our healthcare in the hands of doctors. Asking for a second opinion, questioning a test result or inquiring about or expressing concerns over medications you may be taking can be difficult at best. When I was faced with the option of having my seventh surgery I began to really sit and think about my body, my goals (realistic) of the outcome of the surgery as well as the quality of my life. I was not comfortable speaking freely and easily with my current provider so I changed doctors. Instead of walking in her office uninformed, I confidently presented her with a list of questions I had, similar case studies and outcomes of the treatments and my realistic goals. I was able to weigh the pros and the cons intelligently and make an informed decision based on both my research and her professional experience. Less than two weeks later I had a total hysterectomy, something I had wanted and inquired about many times before only to be told that I could not possibly know for certain that was what I wanted because I was too young, too disillusioned or just too nave about the consequences. Only after ten years did I find restitution in having the total hysterectomy and the ironic thing is that I was fought all that time by the doctors who proclaimed they wanted to help me. I got better when I finally decided to help myself.

Questions to ask your doctor include:

  • What are the benefits of doing this?
  • What are the risks involved?
  • What are my other options?
  • What should I do first?
  • What are the probable outcomes of each of these options?
  • What are the probable outcomes if I decide NOT to do this?
  • How many times have you performed/administered this drug before and what were the outcomes?

Remember, this is your body, your healthcare and your decision. Every woman has the potential to be her own powerhouse when it comes to her body, seize the opportunity or someone in a white coat will.

Jennifer Lewis
Author, Endometriosis: One Womans Journey
Freelance writer