Endometriosis is a frustrating disease. You do something to try and help, and it maybe works awhile, you feel better, and then something else comes along to knock you off your feet. It is almost like the disease has a sort of artificial intelligence. You find one way to combat it and it finds another way to strike back. So finding a way to effectively fight it can be pretty empowering and feels incredibly good. Additionally, getting some time away from the pain is great as well.
I was presented with an opportunity to effectively fight my endometriosis by getting an excision surgery from Dr. Arrington. Out of all my surgeries, this was my first surgery that I actually felt better afterwards. I was walking in days, was able to get a job, and re-enrolled in school. It was the first time a treatment actually worked for me.
Dr. Arrington is a speciality surgeon though, not a routine doctor. He's not the OB/GYN you see every month to modify medications and perform a check up. After Dr. Arrington was finished, I returned to my normal doctor. Both doctors approved of this agreement prior to my surgery (in fact Arrington is the one that referred me to the doctor nearer my home).
And this is where the event begins. I had a horrid endometriosis flare about a month ago. The pain and nausea were so horrible I lost almost ten pounds, I didn't leave my apartment for a week, I missed work and school... it was pretty horrendous. I made an appointment with my regular OB/GYN doctor instead of going to the ER; I knew that there was not much the ER could do for me. Their only treatment seems to be pain killers. And I hate taking those. For the pain relief to be substantial, it has to be morphine, and the side effects are no longer worth it.
I get to my appointment, start to be checked in, when the nurse begins to bombard me with inappropriate comments in regards to my temporary treatment from Dr. Arrington. She accused me of being selfish and using my regular doctor only because of 'what was convenient for me'. I tried being calm about it and explained how I wanted to try a different type of surgery since my prior two surgeries had shown no improvement. She then grabbed my face and lectured me about the surgical skills of my regular doctor, with the tone one uses when speaking to a toddler caught in the cookie jar.
Here I am thinking, "this is my body, my disease, my suffering, and no one has the right to lecture me on what is best for it.". I was so insulted, I grabbed my things and said (out loud now), "I'm sorry, am I not supposed to be here? Should I leave?". I was furious, and I made a decision to not accept such a sort of treatment. I was ready to leave, let them keep my copay, and get the hell out of there. If I had not needed a note for school, I would have just gotten up and left without a word and tried to find another doctor.
It's situations like these that get me frustrated. That doctors look at endometriosis patients as stock, as a monetary value in their revenue. Obviously, medicine is their profession, not their charity. Yet there is a division between the doctors that balance their desire for higher incomes with the desire to do the best they can for a patient. During this same visit, the doctor pushed me to go back onto Lupron (which did not help any and gave me horrible, permanent side effects) and to consider a hysterectomy (which research supports is not as effective if done before age 35). Both procedures also provide significant monetary returns. It was tremendously insulting.
Having any chronic illness (especially a painful/debilitating one) can really put a person at the mercy of his/her doctors. All access to medications and treatments are managed by these gate keepers. And sometimes, it seems they get more focused on what they think, rather than what their patients think. They do not always think of how these treatments can have horrific negative consequences, which is understandable since they have many patients and do not have to experience it personally. But they should still keep in mind that their patients are people that have to live with the choices they make.
On top of doctors sometimes being careless in regards to the unintended consequences of them ignoring patient opinions, but the patients, who have grown accustomed to being at their mercy, learn a significant sense of helplessness. They forget that they have choices and powers in what happens to them. Especially the sicker and more helpless you are feeling, the less capable you feel in questioning a doctor's decisions/actions. I myself have fallen victim to overly trusting a doctor's judgment and the consequences of my lapse in judgement have cost me dearly.
Here is my advice: question your doctor's decisions. Research what they prescribe. Be firm in what you want. And if they are not 'okay' with that, move on and find another doctor. Because it is your body and your disease.
I really like the doctor I saw. As a person, he is a nice and caring individual. And he is a good doctor. But I did not feel like my opinions/actions were being respected. So I'm moving on. No matter what your disease is, if you do not feel like your opinions are being respected, you should move on. Because ultimately, you are the one that has to live with their treatments. Do NOT be a passive receiver!