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Writer's pictureLezbigay Together

Asking the Right Questions: Patient Advocacy



When we walk into a medical facility, we want to think that we are in good capable hands. We assume that the doctors and staff are doing what they are expected to do. But sometimes, as patients, we need to advocate for ourselves and ask the right questions. I, unfortunately went into the IUI process assuming that our fertility team were experts and I had to put my complete faith into them and the process without question. This post is going to talk about the obstacles my wife and I faced during our IUI journey and the importance of asking your doctor the right questions.


When we began the IUI process, I had assumed that my physician had reviewed my donor's profile and looked at not only his medical history but his genetic conditions prior to the insemination. However, right before our fourth try, my doctor called me up out of the blue explaining to me that my donor specimen had a genetic disorder called hyperplasia; a genetic disorder that I had not been tested for. My first thought was, why was this information not brought to my attention earlier and why had I not been tested for this?


You see, in the beginning of the process after my genetic test results came back, one of the nurses at the practice had explained to me that I had only not been tested for two conditions, but when I asked if I needed additional testing she said that the likelihood of me being a carrier for either of these conditions was very small so she did not think it was necessary. I misunderstood this; I had thought that meant I had been tested for everything so when I looked at the donor profile I thought that even though he was a carrier of a condition, it would not matter because I had come back negative for all my results. Flash forward to three cycles later, this was approximately $5,000 later, I was found that not only had I not been tested for this condition but there was a large number of conditions I had not been tested for. Mind you, since that first visit, this was the first time I had spoken to my doctor in months.


After my doctor gave me this information, he proceeded to tell me that we needed to skip that month's cycle and not only complete more genetic testing, but he wanted to make sure my fallopian tubes were not blocked; this was yet another thing I thought had been done in the very beginning of this process during my internal ultrasound. This was an additional $900; almost an entire cycle's worth. So, I was distraught. What if my tubes had been blocked this whole time and IUI was not possible? Why had this not been done in the beginning along with all the other preliminary testing? We had already spent most of our savings on the first three cycles of IUI.


To make matters worse, when I went to my appointment that following week to have my fallopian tubes checked, my doctor blindsided me with signed paperwork from when we purchased our donor specimen. He showed me that we had signed saying we were aware of the donor's condition so they were not liable. When I told him that the nurse explained to me that I had only missed two conditions from the genetic testing and hyperplasia was not one of them he said, "Oh well it seems mistakes were made on both sides."


There were definitely mistakes made. I should have asked more questions, asked for clarification, and ensured that I had thoroughly done my own research before undergoing this process. I think sometimes doctors forget that what they do for a living is not something other's are familiar with. Their common knowledge is very different from people just starting the fertility journey.


My advice:

  • Ask your doctor to look over a donor profile with you to see if the donor is a good fit for you.

  • Ask for clarification if you do not understand what is being explained to you.

  • Ask for specification when it comes to the testing they want you to undergo. If you do not go through them for genetic testing what is the next best option?

  • Make sure you look at the health history of your donor and talk to your doctor if you have any questions or concerns.

  • Do your research and have questions ready at each appointment.

When it comes down to it, this is a job for your physician, an everyday thing. But for you? This is your future. Your family's future. Do not be afraid to ask questions no matter how simple they could be. Advocate for yourself.



Thanks for reading!

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