All in My Head: Women Often Ignored for Severe Pain

Severe pain impacts women, but health professionals often ignore their voices.

One of the most disheartening things to happen to me during the coronavirus pandemic was giving myself a skin infection on my chin from picking due to stressing over the shutdowns. I opted for a virtual doctor’s appointment to avoid going in person. The online app doctor looked at me through the camera. She commented, “Well, good thing there are masks, right, honey?”

She said to me about my face, “Good thing there’s masks, so other people don’t have to see your face.”

Now, of course, she didn’t say, “So other people don’t have to see your face.”

But what do you think I thought when she said that? This authority on my health tore me down without even an ounce of recognition of the emotional implications of her words.

This is also not the first time that doctors ignored a valid concern. I am a plus-size woman, and rather than listen to me. Indeed, most doctors want to address my weight instead of the cause of weight retention by someone who eats fairly healthy.

My Experience With Severe Pain

My birthing experience further sheds light on my experiences with severe pain.

The day my daughter was born was hands down the worst day of my life. Now I will never tell her this because I don’t ever want her to think that it is her fault. But my birth experience was the opposite of beautiful. It was traumatic and abusive and scary. Furthermore, I was alone for so much of it because I lacked a supportive partner and was sadly faced with medical professionals who opted for their lunch break over…well, my life.

I spent my entire pregnancy, including the years when we were trying to get pregnant, planning a dreamy beautiful, and serene water birth. And I got close. I labored naturally for 14 hours handling the contractions three minutes apart, then two minutes, then one – for hours like a champion. It hurt, but I knew I had the power. I had lived in pain my entire life – contractions had relief – I had this in the bag. Fourteen hours into my labor I got out of the birthing tub to get ice chips. Then as I lifted my leg over the edge of the tub, I felt the most excruciating pain. My daughter had flipped inside of me. She was now in a full split with one foot by her ear and one hanging out nearly earthside.

I was rushed into surgery with very little time to prepare emotionally. Even the prep for the surgery was traumatizing and was an example of having my humanity ignored. Inexperienced rookie nurses in training on their first week of work pricked my veins over and over again. Then they ignored my cries in pain as my arm turned purple. They told me, “Let me just try one more time.”

My mother finally had to yell and cause a scene to get someone more experienced to put my IV in to save me from continuing to be a human pin cushion. For the record, I have pretty normal veins, nothing unusual. They also shaved me with no lubricant such as shaving cream, which caused the razor to slice me open multiple times – leaving the wounds unattended. They would go on to have an infection that would impact my postpartum experience.

At the door to the OR, the midwife who promised she wouldn’t leave my side…told me her shift was over…and left me at the door. Another midwife I had only met one time prior showed up to take me into the emergency surgery room.

The anesthesiologist was clearly in a rush and made me feel I was a burden. She missed my spinal tap three times before getting it in on the fourth try. This procedure was the most severe pain I have ever felt was when they hit a nerve connected to my leg. In fact, the pain of my daughter flipping inside of me while 8 cm dilated was nothing compared to the long needle in my spine not hitting where it was meant to hit. I was convulsing badly from anxiety, reactions to the pain, and sheer terror. They strapped me down – arms stretched out like a cross with leather bands strapped to my wrist to the table. I felt like a prisoner…alone…while the doctors and nurses talked around me, barely acknowledging I was a human being.

They left me sitting in my bloody bed for twelve hours in post-op. Nurses promised to come back and never return. My mom had to fight for someone again to change the bedding and help me. They did not even show the little kindness of acknowledging me.

Giving birth was not the most beautiful day of my life. Neither were the three months that followed where I got an infection on my incision, mastitis, couldn’t go to the bathroom alone for almost six weeks, my milk never came in. Besides that, other moms judged me. They made me feel like I was hurting my child by having to give her formula to nourish her.

I felt like a failure. To be honest, I am not shocked. Looking back, that I had some pretty severe postpartum depression.

I was lucky enough to know people who have been through this and knew about postpartum depression. So I immediately contacted a mental health specialist who helped me work through these feelings and hormones.

The Unfair Label of Hysteria

The history of hysteria is an important one to note when discussing women and pain.

“Until 1980 hysteria was a formally studied psychological disorder that could be found in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. Before its classification as a mental disorder, hysteria was considered a physical ailment, first described medically in 1880 by Jean-Martin Charcot.” – McGill, Office of Science and Society

According to Wickedpedia:

“The word hysteria originates from the Greek word for uterus, hystera. The oldest record of hysteria dates back to 1900 B.C. when Egyptians recorded behavioral abnormalities in adult women on medical papyrus. The Egyptians attributed the behavioral disturbances to a wandering uterus—thus later dubbing the condition hysteria. To treat hysteria Egyptian doctors prescribed various medications. For example, doctors put strong smelling substances on the patients’ vulvas to encourage the uterus to return to its proper position. Another tactic was to smell or swallow unsavory herbs to encourage the uterus to flee back to the lower part of the female’s abdomen…. Between the fifth and thirteenth centuries, however, the increasing influence of Christianity in the Latin West altered medical and public understanding of hysteria. St. Augustine’s writings suggested that human suffering resulted from sin, and thus, hysteria became perceived as satanic possession. With the shift in perception of hysteria came a shift in treatment options. Instead of admitting patients to a hospital, the church began treating patients through prayers, amulets, and exorcisms. Furthermore, during the Renaissance period many patients of hysteria were prosecuted as witches and underwent interrogations, torture, and execution.”

I lived with my pain for so long because the chiropractors and doctors I saw essentially ignored me. They told me to go on a diet or reduce my stress less. Try this stretch – try that turmeric – try this keto diet or that elimination diet – try this medication – see a therapist – try this SSRI for stress – but yet not a single one acknowledged the severity of the pain I was in. Not a single one took my pain seriously enough even to order imaging to see if something was wrong with me.

“Women are more likely to wait longer for a health diagnosis and to be told it’s ‘all in their heads’. That can be lethal: diagnostic errors cause 40,000-80,000 deaths in the US alone…In 2016, the Brain Tumour Charity released a report on the treatment of brain tumour patients in the United Kingdom. It found that almost one in three of them had visited a doctor more than five times before receiving their diagnosis. Nearly a quarter weren’t diagnosed for more than a year. Women, as well as low-income patients, experienced longer delays. They were more likely than men to see 10 or more months pass between their first visit to a doctor and diagnosis –and to have made more than five visits to a doctor prior to diagnosis. – Maya Dusenbery for BBC.com

My story is not unique. I like to think I am an absolute individual. However, this is not only my problem. We must call out the medical industry for systemically ignoring severe pain in women.

A Life Free of Severe Pain?

Can you imagine a life free from severe pain?

For all of the reasons explained above, I couldn’t before I met NP Mary Moshier. She was my client first. I knew that she was in the neuro field, so I asked her for help. Without hesitation, she ordered me an MRI. For the first time, I was finally going to know what was wrong with me.

The MRI experience was not fun. I had a severe vasovagal response to stress in a closed MRI, and they had to pull me out. So I sat on the machine in tears because someone was willing to listen to me and help me the first time. But I was going to get in my own way!

Elizabeth Losin, Ph.D., a psychology professor, reported on this topic and dug deep into a Journal of Pain study: “Gender Biases in Estimation of Others’ Pain.”

“It was found that female patients were perceived to be less pain than the male patients who reported and exhibited the same intensity of pain. Additional analyses using participants’ responses to the questionnaire about gender-related pain stereotypes allowed researchers to conclude that these stereotypes partially explained these perceptions. If the stereotype is to think women are more expressive than men, perhaps ‘overly’ expressive, then the tendency will be to discount women’s pain behaviors….What’s more, psychotherapy was chosen as more effective than medication for a higher proportion of female patients compared to male patients. Additionally, the study concluded that the gender of the perceivers did not influence pain estimation. Both men and women interpreted women’s pain to be less intense.”

Well, it turns out it all IS in my head…but not the way you think. I have a cerebellar tonsillar ectopia that causes occipital neuralgia. Aka, my skull is 2mm too far forward and damaging a nerve in the occipital lobe of my brain. This condition causes searing pain in my occipital lobe that radiates down my neck and shoulder and behind my eyes.

Google it.

“Severe,” “shooting,” “intense.” All words to describe the level of pain for the condition that I have. The extensive medical terms for the base of the skull and the back bottom part of your brain make it sound a lot scarier than it is. When I received my MRI results, I Googled them. Terrible idea. Quickly, I plunged into the dark rabbit hole of worst-case scenarios. Aahhhhh, brain surgery! Mary brought me back to earth. She explained all of my options, shared her own experiences with her neurosurgeon and neurologist, and reminded me that there is now a light at the end of the tunnel.

For the first time in my life – I actually CAN imagine a life free from severe pain. All it took was 1 NP to listen finally.