Giving feedback to previous doctors

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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.

Sincerely,
Elizabeth Metz

You cannot protect yourself from sadness without protecting yourself from happiness

Jonathan Safran Foer

I spent my life learning to feel less.
Every day I felt less.
Is that growing old? Or is it something worse?
You can not protect yourself from sadness without protecting yourself from happiness."

- Taken from Extremely Loud & Incredibly Close by Jonathan Safran Foer also know as one of the greatest wordsmiths that ever did live

The past few months have been a great test of how well I can cope with consistent vulnerability. There have been quite a few good things that have happened - in fact if I wasn't being lazy and was still publishing Thankful Thursday on here, I would probably have a list a mile long every week for all the things I have to be thankful for. [Quick recap so it doesn't seem like life is terrible: lots of great work feedback & opportunities, lots of opportunities to inspire young minds about science, sponsorship from work to do my dream Masters degree at Durham University next year, amazing friends that are there at the drop of a hat, the most supportive family you could ask for, higher self confidence, relatively little endo pain, exciting plans for the future and lots of little everyday things too]

However, there have been a couple of things that haven't turned out quite the way I had wanted them to, and it's gotten me in a little bit of a funk. It's funny how you fool yourself into thinking you've won the war, when you've really just won the battle. There are always going to be challenges in life and the things you take for granted aren't necessarily going to be there forever. I'm trying not to beat myself up too much about the grief I have for things that no longer are, particularly when I have so much good going for me. I've gotta let myself feel the hurt, even if it sucks for the meantime. Denial will get you nowhere except 2 pm in the work carpark unable to suppress your tears.

I value honesty, and I value transparency, and I value vulnerability. Openness. Passion. Sharing. Having those values makes life hurt, but it also makes it brilliant. With those kind of values you get to experience the best life has to offer, but by keeping the door open to those experiences, it's also inevitable some tough things will sneak in too. The people I admire most have those values and still keep their vivacity for life. If I turn out to have even half that spark I'll be doing well. I wouldn't have it any other way.