Hunting for an Endo Specialist

I wish this post was going to give more hope. Sadly it won’t. 

When I found out I needed a specialist. I was upset I had to hunt again. But figured, they specialize in this, they know the pain and they will help right? I found a list of names on a support group I am in. I also checked online for any others. My nurse practitioner thought of any doctors they knew of who they thought could help. 

We sent out one requisition. 

We sent out a second. And a third. A fourth. Finally I lost count at 22.

 All refusing me. All saying no. As is their right. But to say I felt defeated, unheard and forgotten about is an understatement. I couldn’t understand why no one would even give me an appointment for a year later or something. 

I cried every time I was refused. Begging for help. My depression came back. I wanted to die multiple times. I was tired of the pain, fighting to be heard and just exhausted. 

One evening, I was having a pity party after another rejection call. I decided to vent to my support group on Facebook. These ladies all understand and always offer advice, love and support. So I decided to make a post just asking if anyone knew anyone who would actually take me. I am so glad I made that post. 

A bunch of people told me about one doctor. They were on my list to contact. But I hadn’t made it that far down yet. They are a fair drive. But all of these individuals were recommending them and saying all these amazing things. I figured, what’s the worst that’ll happen? They say no? Everyone else already has. So I called my nurse practitioner, gave them the name and asked them to send it out. I also requested they add that ‘ patient is aware of an extended wait time and is willing to wait’. Off it went. 

2 days later, 2 days! I got a call. They booked me for 2023. I cried on the phone to the poor receptionist because I was so happy. I finally found someone who agreed to see me!  Now it was almost a year away, but I didn’t care. At least I had some hope. 

We kept sending out more requisitions, in hopes I would be seen sooner. I am unsure how many has been sent in total, but I was aware of over 20. Over 20 doctors refused me. Told me no. Didn’t ask me to wait or give me hope. Just told me flat out no. 

I started preparing my paperwork for the specialist. I was going to come armed and loaded. I had just under a year to prepare. The months started to go by and the date got closer and closer. Then suddenly, I got a call in September 2022 from the specialist office. They had a cancellation and wanted to know if I wanted an earlier appointment. YES PLEASE! I took it without question. I’ll make the appointment work. I am so grateful to get in earlier! Now I’ll be seeing the specialist at the end of November 2022 instead of January 2023. Hopefully this doctor will have an idea on how to help. I am hopeful. 

One doctor, one. Out of how many? Agreed to see me. Only one. 

I am beyond grateful I have this appointment. But it breaks my heart to know someone else will have this same struggle. To be refused. This post is made simply to show you, that being persistent will pay off. Ask questions. Research. Have a good relationship with your doctor. Stick to the facts(I know it’s hard not to get upset and emotional, but you need to try) and most importantly, find a support system that understands. It took me years to join the Facebook groups. I was shy and embarrassed of the pain and needing help. I don’t know why I refused for so long. These individuals, who are all my fellow endo warriors and strong as hell, understand and want to help in anyway they can. I was never alone. I just didn’t realize.