Chapter 37: To the Doctors Who Didn't Believe Me

Note: I got this idea from a chapter in Lara Parker's new book Vagina Problems. I reviewed it a few posts ago and loved it. You should definitely get a copy when it's out in October. I figured that it might be helpful for me to do it for myself, too. So, here goes.

To the Doctor and Physicians Assistant Who Ignored My Pain,

Do you remember that summer I came to you for help? I bled for 20 days, then stopped for 10, then bled for another 20? I was bleeding through overnight pads several times a day. I was scared and in pain. As a PA, you gave me a blood test for Polycystic Ovarian Syndrome and made me get a transvaginal ultrasound. It was so incredibly painful and the only way I got through it was with 4 Xanax and several ibuprofen and it was still excruciating. I get why you thought it might be PCOS- I'm overweight. But, that's not the only PCOS symptom. Often people with PCOS have light periods and longer stretches in between bleeding. I had the opposite problem. I learned that from a 2 minute Google search. Women's health is supposed to be your specialty. How did you ignore that? After my PCOS tests came back negative, I suggested that perhaps endometriosis was the culprit. You shrugged at me and referred me to the doctor you work with. You officially gave up on me.

I remember having high hopes when I went in to meet the doctor for the first time. They were immediately dashed when you didn't introduce yourself before you told me that I was fine and there was nothing wrong with me. Then you offered me an IUD. I said that I didn't think I could handle the insertion process- I've heard from non- endo friends that it hurts, so I assumed that for me it wouldn't be possible. When I mentioned this concern to you, you bragged about how great you were at inserting IUDs and that no one had ever complained of pain. Based on the sheer number of women I know with IUDs and how many described the insertion process as excruciating, I quite frankly don't believe you.

I then asked you if it was possible that I had endometriosis. After speaking to the PA I was pretty convinced that endo was the culprit and knew the only way to help was to operate. You laughed and told me to stop Google diagnosing myself. You said it really didn't matter if I had it anyway, which is something I'm still confused by. You offered me a uterine ablation as an option, and mentioned that I could still get pregnant after one but would likely miscarry any pregnancy I had. Who would want this as an option? I asked if you could tie my tubes when you did the ablation and you laughed and said not until I'm married. What in the actual fuck does that have to do with anything?

I am so glad I listened to my gut reaction and didn't let you touch me. Instead, I threw a fit until the practice would let me switch doctors so I never had to see you and your condescending arrogance again. Then, I Googled until I found an endometriosis specialist in my city. And you know what? He listened. He was horrified when I told him what you said to me. He said the operation you proposed would have increased my pain. It took me 10 minutes to convince my surgeon that I had endo and to schedule surgery. He listened to me. He wrote stuff down. He asked active listening questions. He comforted me when I was concerned. He did everything you should have done and failed to do.

I would love to say that you didn't cause harm because I didn't let you do anything to me. I may have escaped the physical harm you would have caused, but I didn't escape the emotional and psychological harm. You both made me doubt my body and what I was feeling. That's inexcusable and definitely in direct conflict with the whole "do no harm" aspect of medicine. I woke up from my surgery panicked that the whole thing was for nothing and relieved that I had a condition that can't be cured. How fucked up is that? I was relieved because that meant my pain was real and I wasn't crazy. Fuck you for making me doubt myself, my strength and my perception of pain.

I wish that I had stood up to you and better advocated for myself. To the PA especially, I always wonder what I could have said differently that made you understand that this wasn't a "take ibuprofen and Vitamin B 3 days before your period" type of pain. This was a crying in bed, throwing up and wondering which household object I could use to dig out my own uterus type of pain. That's not normal. Even though I saw those things to you, verbatim, you suggested ibuprofen and Vitamin B as the solution. That's like trying to hold back Niagara Falls with a teaspoon.

And it's not like endometriosis is uncommon, either. So when I described my symptoms to you both, that should have been something that at least popped into your mind. The fact that it didn't makes me glad that one of you is now retired and you can't make other women suffer the way I did.

I know that I need to work through this because I don't want to continually doubt myself and what I'm feeling. I know my body and I know when something does not feel right. I now have knowledgable advocates in my corner and I'm ready to continue to improve my quality of life. In some ways, you actually inspired me. Unfortunately for women, your level of incompetence is not uncommon in women's healthcare. Because so many women face doctors just as ignorant and heartless as you, the members of the endo community have to teach ourselves a lot of the time. It sucks and it's unfair. But I'm grateful for the chance to truly understand my body and use my knowledge to help others.

In conclusion, as a lawyer I have to take continuing legal education classes. I know doctors do, too. To the doctor that wanted to perform a uterine ablation on a person that clearly had endo- may I suggest your next one focus on endometriosis?

Keep learning and do better,

Christine