Monday, September 1, 2014

Giving feedback to previous doctors

Over the years I have had many doctors that have dismissed me and my endometriosis symptoms. Unfortunately, this is a reality for almost all patients with endometriosis. Often I just move on to a new doctor without giving the last doctor any feedback. However, after another doctor took my urinary symptoms seriously and found some treatments that helped manage them, I felt that it was my duty to email the original doctor to supply them with this information so that in the future they would be more informed in treating new patients.

I tried to be as respectful, empathetic and civil as possible. Doctors are humans and make mistakes, and endometriosis is a disease that I imagine would be frustrating to treat, as there are no treatments that work for everyone, and often patients end up with none of the treatments being fully effective. It's unpredictable and far from simple. However, on the other side of the equation, women with endometriosis are often marginalised and told that the pain is in their own head or that there is nothing that can be done and that they should just deal with it. This is not okay, and many women end up having to cope with symptoms without even knowing about or trying treatments that may work for them.

Health professionals, can you add any tips for communicating with doctors and health professionals who have misdiagnosed or dismissed symptoms?

The following is my email to the receptionist at this doctor's clinic (name censored to protect identity):

Dear Sir/Madam,

I would like to give some feedback on treatment I received from Dr xxxxxx in December 2012. I went to see Dr xxxxxxx about a few issues that had persisted after a laparoscopy was conducted on me by another doctor in March 2012, where I was diagnosed with endometriosis and some of the endometriosis was ablated.  I went to him as I was being woken up in the middle of the night multiple times with my urinary symptoms (urgency, frequency, burning) and it was also causing me to miss work. Dr xxxxxx dismissed me and told me that if he had to get up in the middle of the night to pee, I could “deal with it” too. Being 24 years old when I heard this, I did not accept this. I went and did my own research, changed my diet (cut out wheat, caffeine, alcohol and soy) and tailored my exercise plan. After these changes did not give me the full improvement that I had hoped for, I then sought a second opinion in Dr Susan Evans in Adelaide. She prescribed amitriptyline (25mg a day) for neuropathic pain that she believed was causing some of these symptoms, and pelvic floor physiotherapy to treat muscles that had become permanently tight due to my long history of pelvic pain. As a combination of both of these treatments over the course of several months, my urinary symptoms have pretty much disappeared and I can now sleep through the night easily and not spend my work day distracted by urinary pain.

Dr xxxx did prescribe me with tranexamic acid for heavy bleeding during this same appointment and that has helped me greatly. I am thankful for that.

I hope you will relay my feedback to Dr xxxxx and that he will take it into account when treating future patients.

Elizabeth Metz

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