Dear My First Urologist: a letter from an IC/BPS patient

Dear Urologist,

This is a subject that Interstitial Cystitis/Bladder Pain Syndrome patients, have been meaning to discuss with you for some time now, but your medical authority can be more intimidating than you think.

I am also unsure if you are aware just how much power you surprisingly hold and to what extent you affect the lives of every single one of your patients. The interactions you have with us can be deeper than the bladder pain we come to see you with.

Prior to meeting you, before an introduction and my medical history discussion, I was sent to a cold, sterile surgery room alone, where you performed a cystoscopy without local anaesthesia or a nurse present. I voiced that the pain was unbearable and you promised me it would be over soon.

It was not.

You looked up at me from the screen, told me my bladder was perfectly normal and that it is common for women to get urinary tract infections a lot, especially because the exits/entrances are in close proximity.

After the procedure, we met in your office where there were penis models and diagrams everywhere. Not one visual of the female urinary system. I voiced my health concerns but you dismissed them and continued to give me a talk about proper hygiene.

If you would have given 20 year old me, more than a cold glance and the scripted hygiene talk, you would have seen and heard the despair of someone needing your help. Not a young woman wanting to be told how to wipe front to back, for the 100th time in her life.

What I needed was hope, new treatment options or a referral to another doctor who’s focus was on women’s pelvic pain.

I left that appointment without an ounce of hope, guidance and was more hurt then I have ever felt, emotionally and physically.

As a doctor you have promised to do no harm to your patients, but you must acknowledge that there are ways that you can hurt us without even recognizing you are doing so. The relationship between any patient and doctor should always be built on trust, understanding and the security of knowing that your doctor isn’t going to dismiss you.

You, the Urologist, have the incredible ability to give us some power back that was taken away from us by our pain. That little bit of power can make a big difference while we navigate living life with Interstitial Cystitis/Bladder Pain Syndrome.

Remember, when you take the time to listen to a patient, it tells us that you truly care about our wellbeing.