Just like any other therapy appointment, I was prepared to talk about stressors, anxiety and the like. I wasn’t prepared for the therapy appointment I was about to have. The one where my therapist told me I have PCOS.
Medical Records……not just for hospitals
As we began my session, my therapist casually asked me why I had never talked about my PCOS (Poly Cystic Ovarian Syndrome) diagnosis. She was clearly confused. My youngest daughter had been diagnosed with PCOS 2 years ago. I told her I didn’t have PCOS, my daughter did. She looked very surprised. She reminded me of when she had asked to request my medical records. Then she pulled out a stack of papers stapled together.
There in black in white, dated August of 2010, was PCOS. I had to read it several times to make sure I wasn’t confused. I had not been told about this by my primary physician. My primary is a family doctor, so I see her for everything from colds to pap smears. There was no way I would have forgotten this type of diagnosis, especially since my daughter had been diagnosed. In 2017, when she was diagnosed, PCOS was all new to us.
PCOS…..the mysterious ailment
I was in shock. How could this have been missed for 9 years? Would my doctor not have asked how my PCOS was during regular visits? My therapist went over several symptoms that I had been experiencing that made her suspicious that I had PCOS. Apparently, most doctors are not very skilled in diagnosing it and not much is known about it. Treatment is often birth control pills or Metformin, a diabetic medication.
This was an overwhelming discovery. I wasn’t prepared for this and had no idea how to process it. As my therapist went over the long list of symptoms, I found myself in denial. There is no way I have PCOS. Women with PCOS struggle with fertility. I have three children. They have irregular periods. I only on a rare occasion have that issue, usually due to stress. There were too many things that didn’t add up in my mind. Surely my doctor would have said something in the last 9 years!
Coming to terms….
For some reason, this was and still is a struggle. I don’t know that I have come to terms with it yet. After I told my husband, I become angry. How could a trusted medical professional not mention this? I then began questioning everything. If I had known, could we have caught my daughter’s PCOS sooner? Could she have had a better prognosis and treatment?
I knew I needed to make an appointment with an OB/GYN to follow up on these findings. I also needed to make an appointment with my daughter’s endocrinologist. But I didn’t. I still haven’t. Perhaps I am still in denial.
Answering the questions……
I swore I would never go back to my primary physician. There was anger. I had lost trust in someone that you should be able to trust fully. All of this had been pushed to the back of my mind until a week ago. I got a reminder that I had an appointment with my primary. I needed a medication check that I was required to have every three months.
At first, I decided I would just miss this appointment and this would be the push to find a new doctor. Then, I decided I needed answers. Why was I diagnosed? How did they forget to check up on this?
Today was my appointment. I didn’t go in angry, frustrated or upset. When the nurse asked questions, I asked her some. She looked surprised and said I had legitimate concerns. I calmly waited for the doctor to arrive. I had practice a hundred times how this would go. There were all kinds of scenarios. She would be defensive and throw me out. I would get angry and tell her I am never coming back. I would chicken out and not mention it.
None of those happened. She swept into the room and told me she was going to research this immediately. As she typed on the computer, I prepared myself for her response. She found the visit in which PCOS was first mentioned.
It’s all about communication
“Oh, It’s right here! We put you on Metformin to regulate your periods. You had an ultrasound. No signs of endometriosis.”
I was dumbfounded. I remembered this. But PCOS had NEVER been mentioned. I got sick on the Metformin and stopped taking it. My periods were wonky for a few months, we thought due to stress. I told her this. I asked why PCOS would have been assigned. She shrugged and said “due to irregular periods I’m assuming.”
My appointment finished up and I was still lost of confused as I was in the beginning. Did I have PCOS? Was this all a mistake? Miscommunication?
The doctor stopped back in the room to give me my prescription. “We will have you scheduled for another ultrasound so we can check out those ovaries!”
As I was checking out, the receptionist asked me if I would like a print out of today’s visit. I had never been asked this. Perhaps this was new. YES! I want a copy!
One thing I learned is to document everything. Ask questions. If you aren’t able to understand what you were told or able to explain it to someone else, don’t leave until you can. Request copies of your visits and write things down!
I have always been good about documenting things. I would have written this down, researched it and asked questions. That’s what I do.
Now, I know I have to be more aware. Yes, doctor’s have the degree and the college education, but sometimes we have to ask the right questions. We have to stay on top of things and push to get answers. Doctors are human. They see hundred and even thousands of patients.
I’m not bitter
What happened to me was not right. It’s clear that I was not given all the information. Sure, in the beginning, I was angry. Putting some time between me and the original discovery helped a lot. There is still a lot of research, appointments and questions ahead.
I also know that a family doctor doesn’t specialize in things like PCOS. This means I need to branch out to those who do. While PCOS is familiar to me due to my daughter, it’s not familiar as how it affects me. This is a new journey that is going to take time, patience and understanding.
September is PCOS Awareness month! Be informed!