endometriosis, ibs, infertility

My Own Advocate

This week I learned something really important: I am my own advocate.

Last week I shared about many of my wonderings around my health. Specifically I mentioned that I wanted to learn more about endometriosis because the reading I’ve done feels familiar and closer to an answer than I’ve had in years. Finally, I shared that I would be seeing my gynecologist soon and was eager to have a conversation with her about all of this.

I didn’t know that this appointment would also trigger all of my fears, doubts and sadness about my infertility. 

I didn’t know that this appointment would require me to find courage, strength and bravery as I learned to be my own advocate.

I didn’t know how much energy and effort it would take to stand up for myself, to trust that my intuition is right. 

My annual exam

On Monday morning I had my annual exam, and because I’m forty now, I had the bonus of receiving my first mammogram along with a blood draw. I had to fast for the blood work — I really thought that would come first, then I’d eat a snack that I packed in my bag before the rest of the appointment continued. Instead the blood draw came last, which probably added to the already emotionally charged morning.

So, the morning started with joining children and pregnant women in the waiting room. I was led past the restroom because my nurse practitioner no longer requires me to leave a urine sample. I sat on a table wearing a thin gown and my socks. Although I go through this yearly, I don’t think I’ll ever get used to sitting like this in an exam room.

She came in and asked about my periods. I told her they have gotten a little longer — maybe 2 ½ or 3 days now instead of my usual 1 ½ to 2. I told her they are still very light. She responded: “Really? That’s a great period!”

She knows my history

This isn’t a new medical relationship. I’ve seen her for quite some time… over a decade? I’m not sure. I’m saying this to reinforce that she knows my history. So her comment caught me off guard. I didn’t respond.

After a few other questions she said again: “That’s a really great period!” with a smile on her face. I was confused and angry. I said to her, “I’d take a worse period if that meant I could get pregnant.” I didn’t mention that I still get cramps and have to take large amounts of Aleve to relieve them.

She stopped and looked at me. She knew what she said was hurtful but she didn’t acknowledge it. I started crying. The waiting room, the vulnerability of being barely clothed, the reminder that my body is lacking — I couldn’t hold back the tears. 

She asked if I had any more questions. I took a deep breath and began my questions about endometriosis. “That’s not on my radar,” she responded. After a few more questions I realized she didn’t want to go down that path, so I let it go. I felt dismissed and unheard.

I felt dismissed

As I drove to work, the tears began to flow. The anticipation I held for this appointment were stomped on and thrown out the door. Rather than feeling empowered and courageous for asking questions about my body, I felt belittled and ignored. I sat in my car sobbing. I didn’t want to face work. I wanted to go home, crawl into bed and cry for the day.

However, that isn’t always an option. So, with my red, splotchy face I went into work. That in itself felt hard. But then I had to do my work and interact with others. I had to keep my emotions in check and tried to stay focused. I used so much energy trying not to fall apart.

I knew that she would call me the next day with my blood work results. I waited all day for that call. Around 4:30 Tuesday afternoon she called. 

A phone call

She filled me in on my cholesterol, thyroid and other basic blood work results. All was normal, all was good. As she prepared to end the call I asked, “Can I share some feedback about my appointment yesterday?”

“When I told you about my period and you responded that it’s great, that felt like a very subjective response. Considering all I’ve been through, it didn’t feel appropriate that you would say that to me. I felt…”

“Dismissed?”

“Yes. I felt dismissed.”

She then apologized. She told me how after the appointment she realized she was wrong. She shared how in the gynecological world short, light periods are a good thing. But she knows for me, in my situation, it is not. She told me she was sorry.

I was feeling stronger and heard, so I kept going.

“And about endometriosis… I don’t need that to be my diagnosis, but I do want to talk to someone about all of my symptoms. Is there someone I could talk to that would help me think about everything I deal with? I’m tired of not feeling good.”

“Did I tell you about the new endometriosis drug?”

“No.” No, because you completely dismissed the idea and didn’t want to talk about it… but I kept that in my head.

“Well, I’ve been hoarding samples of it. I think I have enough for a month’s supply…”

She went on to tell me how endometriosis is hard to diagnose without surgery. She suggested I try this new drug for a month and see if it helps with my symptoms. If it does, we know we’re on the right track. If not, we can start down a different path.

As the call came to a close, I thanked her. She apologized again and thanked me for the feedback.

My own advocate

When I hung up I had a smile on my face. There’s no guarantee this drug will help me. There’s no promise of symptoms disappearing. However, something bigger and more important happened: I became my own advocate. I didn’t let her medical knowledge prevent me from speaking my truth. I didn’t let her dismissive comments prevent me from telling her my experience.

my own advocate
The image I shared on my Instagram story.

When I got off the phone, I felt brave and courageous and strong. 

This experience also reminded me that medical professionals are people too. Maybe she was having a bad day? Whatever the case may be, rather than rushing to find someone new, I took the opportunity to give her a chance to apologize, and she did. I took the opportunity to speak up for myself and not only was I heard, I am now further down the road of finding out answers for myself.

I was the only one who could have that conversation. I was the only one who could be my own advocate.

peace.

my own advocate

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