[Content warning: discussion of a gynecological exam and insertion of an IUD]
This post is part of an on-going series exploring the ways in which marginalized identities and oppression play a role in medical care, particularly for disabled people.
When we’re in pain, we’re taught to go to the doctor. We’re taught that the doctor will figure out what’s wrong and do something to fix it. But what do you do when the doctors don’t believe your pain? What do you do when the doctors know there’s something wrong but don’t care?
About a month ago, I went to a new gynecologist to resume care for my endometriosis. It had been over a year since I had last seen a gyno due to insurance issues and being fed up with the doctors I was seeing. I had heard a lot of good reviews about this new practice so I was hopeful that maybe this time would be different.
The first visit went well. I left the appointment full of hope. She was the first gyno to accept that I don’t want children without argument. Every other gyno I’ve seen has argued that I’ll “change my mind when I’m older” or that I should really consider pregnancy as a treatment (which is a whole other can of worms I’ll need to unpack in a later post). I went over my history with her, including the fact that I have been surgically diagnosed with stage IV endo that covers almost my entire abdominal region. When I told her that I can’t take hormonal birth control because of the significant effects upon my mental health, she accepted it without arguement (again, a first!).
By the end of the visit, we had decided that I would try the Mirena implant with the hope that the localized hormones wouldn’t have as much of an effect on me. I left with a number to call when I got my period so that I could have the implant inserted.
About a week later, I was back in the office to have the IUD put in. This wasn’t the first time I had gotten and IUD, though the previous time was non-hormonal Paraguard. I was very anxious as I remembered how much it had hurt both during the procedure and afterwards, as well as worries about what effect the hormones would have.
When the doctor walked into the room, she noted the tangle in my hand and asked if I was nervous. I told that I was very nervous because of how much this had hurt last time. Her response was “Well you’ve never had Dr _____ put one in for you before!” (Yes, she referred to herself in third person for this).
I was so taken aback by this statement that I couldn’t really respond. The utter dismal of my prior experience combined with the cockiness of that statement were astounding. I have extensive endometriosis that, among many other places, covers the outside of my uterus and cervix. Of course stretching these organs to put in a device is going to cause pain. Even if putting in an IUD doesn’t normally cause substantial pain, the holds no bearing for someone with endo. When providing healthcare, part of the doctor’s job is to account for known health issues. Further, my personal experience of my body should not have been so readily blown off.
We then proceeded to prepare for the insertion. Once I was in position, tangle still in hand, they began. As soon as the speculum was inserted, the pain was blinding. I don’t clearly remember what happened after this, but my husband was able to fill me in on what happened. Before we continue, I need to note that when I am in excruciating pain, I am quiet. I rarely cry or make sound out of pain, and I often go nonverbal when the pain is too much.
Once the speculum was in, the doctor checked in to see how I was doing. I thought I said “I’m in a lot of pain” but according to my husband, all I got out was “pain.” She continued maneuvering the IUD into my uterus, commenting, in passing, while doing this that my uterus is only two inches on the inside and the smallness of my uterus was making this more difficult. Now, at this point, a better doctor might have realized that I have had multiple surgeries on this area and that nothing has ever noted a small uterus, at least from external views. This should have been concerning, but seemed to be forgotten as soon as she uttered it.
As she continued to jostle things around inside of my organs, I was whiting out from the pain and she kept telling me to talk. As before, I thought I was getting out sentences, but my husband says that I only got out “pain” and “it hurts” over and over which led her to tell me that I needed to “make words happen” which certainly didn’t help my ability to verbalize.
When they were finally done, the doctor and nurse prepared to rush from the room, though they paused briefly when they saw I couldn’t stand up. I was in so much pain that existing was a challenge at that moment, but their response was that I should feel better by the next day.
I left that appointment and broke down in tears as soon as I got to the car. I felt ignored, belittled and dismissed. I was so frustrated at the treatment I had received, not to mention the horrible pain that was still wracking my body.
The next two weeks were hell. I developed wicked insomnia. I started having daily migraines. My mood stability worsened. My period also just didn’t stop. Worst of all, I was having intense pain near my uterus, pain that was very distinct from my normal endo pains. I tried to wait it out as long as I could so that the doctors would take me seriously, but after two weeks, I couldn’t take it anymore.
I called the office and explained all of my symptoms, focusing on the horrible pain I was in. The nurse I talked to was concerned about the possibility of uterine perforation and got me an appointment that afternoon.
When the doctor first walked into the room, she looks at me and says “So you’ve been in a bit of pain?” I almost screamed but managed to reply that I have actually been in a great deal of pain that was seriously impacting my ability to function.
She proceeded with an exam which determined the device was still in place. Then she got ready to end the appointment. I told her I wanted it taken out today, which earned me some attitude since they had already taken out the speculum and everything without bothering to check in with me. Thankfully, the device coming out was much less painful that going in.
Once the Mirena was out, I started feeling better within days. I’m now back to my normal endo pains which sadly is in improvement (never thought I’d say that!). I can sleep again. The uterus pain has subsided. I finally stopped bleeding. The migraines have stopped.
So now I’m back where I started. I once again need to find a new gynecologist and go through this battle again. I’m losing hope though. I have seen at least five gynecologists in the past couple years, and I have yet to find one that takes my pain seriously.
Why is this such a rampant problem? Why do doctors continuously dismiss women’s pain? Why are we denied treatment for our pain? Recent studies have shown that women’s pain is taken less seriously by doctors and that women are less like to receive treatment for pain.
This is ridiculous. I understand the systems of oppression that contribute to this phenomena, but right now, as a patient unable to receive care, I’m angry. Why am I expected to suffer endlessly without any hope of things getting better? Why am I not allowed medication to ease my pain? Because I might become an addict? Why is that possibility so much worse than the very real reality of a life spent in mind-numbing pain? Yes, I might get addicted, but not to the pills. If I were to get addicted, it would be to not being in pain. If you’re not constantly in pain, it can be hard to understand the full scope of the toll it takes on you. The last time I was given pain medication, my husband and friends were commenting in amazement on the difference that not being in pain made for my demeanor. I smiled for the first time in a very long time. I was laughing and enjoying my life for those short hours. Why is this so awful? Why am I denied relief?
Why won’t the doctors believe that I’m in pain? Aside from the sexism at play, ableism also affects the care I receive. I am autistic. This affects how I express myself. I don’t show emotion like neurotypicals. My facial expressions rarely match what’s going on. I don’t react to pain the way a neurotypical does. I lose the ability to speak when I am under too much stress, which includes pain. When my doctors dismiss my pain because it does not present like they expect, that is ableism in action, affecting the medical care I receive.
I’m not really sure where I’m going with this, other than getting the frustration out. Chronic pain is depressing, anxiety provoking, and, at times, hopeless. When doctors deny relief to patients, whether due to sexism, ableism, racism, fear mongering about painkillers, or any other prejudices at play, these doctors damage their patients. Constant pain takes such a huge toll on someone’s mental health and well-being that doctors who willfully deny pain treatment to patients are going against the Hippocratic Oath they have all taken.
We need to take women’s pain more seriously.
We need to be aware that not all people express pain in the same ways.
We need to take people of color’s pain more seriously.
We need to treat pain even if we are “just relieving the symptoms”
We need to help chronic pain sufferers.