One of my three sisters, Zain came to visit China in February 2018 for the Chinese New Year celebration. She, like my other two sisters Brittany and Lisa, are not related to me by blood, but they were family. I was very excited to have her come visit. I made elaborate plans that included foot massages and briefed Ben’s parents on what things she couldn’t eat while we all spent the New Year together. It was going to be so much fun!
And it was fun, with the exception of the occasional pain that would make it hard to walk. You see, Chinese New Year happened to coincide with when I ovulate, and this meant suddenly stopping on the side of the street because I felt nauseous and lightheaded, or finding a place in the mall where I could sit down before I fell down.
The interruption of my vacation and time with Zain was the real motivation to go back to see a doctor, to try again to make my concerns about endometriosis clear to someone who might know more about this condition. After Zain left, Ben and I spent a lot of time looking for doctors that specialized in endometriosis.
After we found a good one, we called our insurance company and asked them to help us schedule an appointment with this doctor. The agent responded that the insurance company didn’t have a contract with the hospital or clinic where this doctor worked so couldn’t help. After checking on a few other doctors with the same result, we asked the insurance company to recommend a doctor they had a partnership with who also specialized in endometriosis.
This led to an appointment with Dr. Jane. I’m using a pseudonym here to later differentiate her from Dr. Hatty because they both have the same last name. Dr. Jane had a very energetic, friendly demeanor. She did a quick physical examination, which involved a quick feel around my derriere, and she responded that it doesn’t seem like I have endometriosis.
That was not what I was expecting to hear.
She then looked at my test results from my previous year’s physical and some of the data about my health that I had been compiling on my phone. When you are trying to conceive, you have months of information about your basal body temperature, daily aches and pains, cervical mucus, etc. Also, thanks to my apple watch, I data on my heart rate, sleep quality, daily exercise, and much more.
After looking at the data and that physical check I mentioned, she decided my “infertility” problem was related to my ovulation. So, she recommended that I go talk to Dr. Hatty who specialized in helping women with their ovulation. In any case, she would order an MRI and a blood test to confirm I did not have endometriosis.
I was a little bit confused by this. Ben and I wanted to have children. However, our lack of success up to that point was not what brought us to the doctor. We had only tried for about 7-8 cycles before we saw the doctor. The definition of infertility is not being able to get pregnant after 12 months of actively trying, and I was not sure the month I didn’t ovulate counted towards those 12 months. Nevertheless, I was now being recommended to see Dr. Hatty about my ovulation.
But what about the pain? I came to see about the pain, not about making a baby.
Ben and I suggested to Dr. Jane that perhaps we should wait until I had done the MRI and the blood test and got the results back before going to Dr. Hatty. However, Dr. Jane insisted that there was no need to do that; I could go see Dr. Hatty directly. She was quite confident.
I did not know what to do about this except to make an appointment with Dr. Hatty, which was not easy. The hospital and insurance company wanted an explanation about why I wanted to see a different gynecologist. It was hard to explain when I was also unsure why I was being recommended to a new doctor when the blood test and MRI had not yet been conducted. However, I managed to explain that this wasn’t my idea, and they scheduled an appointment for me to see Dr. Hatty the same day after much confusion and irritation from the customer service representatives.
It was only upon talking to Dr. Hatty that I learned Dr. Jane had mistakenly assumed that Ben and I had been trying to get pregnant for three years because we had told her we were married for that long. Dr. Jane had apparently written on my medical record that I was infertile, and she thought the problem was related to my ovulation. (This would later cause me problems with the insurance company as my medical insurance does not cover issues of “infertility.”)
Dr. Hatty looked at all the same data I shared with the first doctor, and she also thought my ovulation didn’t look that great. She ordered a battery of additional blood tests and an ultrasound.
Everything Dr. Hatty tested for came back either negative (as it should be) or normal. The one blood test Dr. Jane had ordered also came back, but far outside the normal range. This blood test looked at CA 125, CA standing for cancer antigen. To say this blood test result scared me is putting it mildly. Did I have cancer?!
This is the danger of using Google to investigate medical issues. It occurred to me, however, to investigate the relationship between CA 125 and endometriosis. It turns out that this cancer antigen can also be a marker for endometriosis. I was immediately relieved. I now had some evidence that would allow me to revisit the issue of endometriosis.
The following week, I had another appointment with Dr. Hatty. You see, I couldn’t change back to Dr. Jane without a referral, even if her test result was the only one that seemed to be getting at a problem. However, I ran into Dr. Jane in the waiting area, and I showed her the result of my CA 125. She said, “It looks like you do have endometriosis. We may have to give you a shot.” The problem was that I was talking to a doctor I didn’t have an appointment with, which the hospital frowns upon. So, we both had to go our separate ways before I could ask, “What shot? What do you mean by giving me a shot? Can I make an appointment with you?”
All of this was happening in another culture and language, and every trip to the hospital was exhausting.
I had my MRI on the day of the second hospital visit. However, the result would not be released for another 4 days. So, two weeks after the first meeting with Dr. Jane, I had my MRI results. The results were inconclusive. They could say for sure that there was some abnormality with my endometrium, but they weren’t quite sure what it was. They said it would be up to the doctor’s judgement to decide what was going on. Dr. Hatty looked at the results and recommended a diagnostic surgery to have a closer look but this was not her area of expertise. So, she referred me back to Dr. Jane.
You can imagine me going back to the customer service reps at the hospital to explain how I wanted to see the original doctor again.
Unfortunately, the customer rep I dealt with was a know-it-all who half listened to what you were saying and then told you what you needed to do, which normally was not what you needed to do. However, I was incredibly tired of being run around the hospital, and I did not care what she thought I needed to do. I just told her to schedule another appointment with Dr. Jane in two weeks, and she ultimately did after my insistence.
At this point, I had decided that I did not care how much foolishness and attitude I had to deal with, I was going to get the care I needed even if I had to drag it out of people tooth and nail. I stopped in those moments worrying about how it looked for a foreigner to get irritated. I stopped worrying about being an ambassador for the entire black population. And when necessary, I reminded people that their opinion was not relevant to my care.
This was especially important as I was trying to schedule surgery with a specialist at one of the top women’s hospitals in China. This doctor only did surgeries at this hospital on Wednesday mornings. This gave me only 4 chances per month. Also, one Wednesday was always ruled out because I couldn’t do the surgery during my period. So, I really only had 3 chances per month, and, believe it or not, I wasn’t the only patient who needed surgery. This meant the timing of appointments and surgeries were very delicate things, and the customer service rep held a lot of power over how that happened, and she knew it.
However, when you reach the level of pain, discomfort, and frankly irritation that I had reached, you just stop caring so much about what people think and start insisting on what you need.
Of course, I definitely believe kindness is the best path to your destination, but when that’s not working, you just need to assert your right to good care. It’s important to note that this woman was not behaving this way because I was black or a foreigner. Ben’s normally very easy going, but he cannot stand this woman either. If we have no choice but to interact with her, he lets me handle it. She is incredibly rude, and she speaks to everyone like they are a child.
However, I am quite accustomed to being spoken to with a lack of respect and like I am a child. I am young; I am black; I am female. I get that a lot. So, I was not at all impressed by this woman. I just kept speaking to her until she did exactly what I needed her to do. Every week we would spar, and I would go home feeling irritated with her but more than anything victorious that I had again accomplished my mission, on my timeline. I ran around that hospital every Wednesday in the month of March, but by mid-April I would have finally, a definitive diagnosis.
**The featured image is of Zain and I ice-skating during her trip to China.
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