My Diagnosis Journey: Part 3

Read Part 1 here
Read Part 2 here

Finding a gynecologist who was willing to listen to me and talk to me about endometriosis was like pulling teeth. The fact that the doctor I had been seeing brushed off the thought of endometriosis really hurt me.

I ended up going through 5 different doctors. They all performed the same procedure- a transvaginal ultrasound. They seemed to ignore that medical records that I brought to them, which stated that I had just had that procedure done a few weeks ago somewhere other. It annoyed me that the first thing they would suggest was that I was pregnant. If they read my medical records, they would know I was not sexually active due to pain. So how could someone who was not having sex be pregnant?

While each doctor turned me away and frustrated me, there is one I will forever remember. This was going to be my first time seeing a male doctor. I was getting no where with female doctors, so hoped he would show more compassion.

"You're just crazy"

I sat in the exam room, explaining to him what was going on, and I felt I had made the right decision. I quickly changed my mind when he called my husband into the room. Right in front of me, he told my husband my symptoms were psychological... that I needed to see a psychologist. The reason I wasn’t feeling romantic with him anymore was unrelated.

He explained that there was no way I had endometriosis, even if my family members had it. He said that a surgery would be a waste of time and they would find nothing. I sat there, letting him belittle me in front of my husband. As soon as we left the office, I broke into tears. This was my final breaking point. I had no idea what else to do. Was I really just crazy?

The fact that I was just humiliated in front of my husband led me to a panic attack. When my husband calmed me down, he told me we would figure it out. We would call insurance and see if they could help us find someone in our network that specializes in endometriosis.

Back to square one

A few days later, a friend of my parents told me how her daughter had endometriosis and that they went to this amazing specialist. She warned me they were out of network and pricey, but I didn't care. I called them right away and had a phone consultation with the doctor. He told me it indeed sounded like a pretty severe case of endo and that they would need to do quite a bit of surgery. A few days later, my surgery was scheduled. But just like that, a few days later my surgery was cancelled. When the nurse called me to tell me what I owed right up front the day of surgery, my jaw dropped. I knew it was going to be expensive, but I had high hopes there would be a payment plan.

I had to decline and take my name off the surgery list. Back to square one, I broke down again. A few days later, my husband helped me call around trying to find hospitals close by that would be able to perform surgery. I ended up finding one and made an appointment to meet with the doctor.

The new doctor explained how he knew about endometriosis, but there were certain things during surgery he would not be able to perform, that it could be risky. At this point, I didn’t care. I wanted and needed that endometriosis diagnosis. I knew I wasn’t crazy and that something was wrong with my body. We agreed that this laparoscopy would only be exploratory and that he would remove what he could.

Surgery morning

Surgery morning came fast. Before I knew it, they were wheeling me back into the OR. I remember many doctors watching over me and then my eyes closed. When I opened my eyes, my doctor's face was right there watching me. I slightly remember him saying, “Kim, you DO have endometriosis”. I began to cry tears of relief and pure pain. When they calmed me down, my husband came back to see me and confirm what I thought I heard my doctor say, “You do indeed have endometriosis”.

Finally, I have a diagnosis

For some, they wonder why someone would ever wish to find out they have some sort of illness. If you experienced years of pain, being told you were crazy and needed therapy, you would understand the excitement of finding a diagnosis.