Op-Ed: I Spent 15 Years In Pain. Here's What I Learned About The Gender Pain Gap

woman lying in bed holding her stomach in pain

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Rachel Charlton-Dailey is a journalist specializing in chronic conditions and disability. Her work is featured in publications such as Healthline, Huffpost, Metro UK, The Guardian, and Business Insider. Charlton-Dailey often uses her platform to spotlight issues that affect disabled people, as well as issues often dismissed by healthcare providers. Here, she shares her first-hand experience with the gender pain gap.

Seeking medical care can be stressful for anyone, but if you were born female or are presenting as female, you may face what's called the "gender pain gap."

Compared to people born male or presenting as male, people trying to access healthcare as women face significant challenges not just in diagnosis and treatment, but in being heard and having their pain taken seriously in the first place.

I experienced the gender pain gap firsthand. After struggling with intense gynecological pain for 15 years, it was only in August of this year that I received a diagnosis of endometriosis. The road to getting here was long, frustrating, and painful in more than physical ways.

Since starting my periods at the age of 17, I experienced debilitating cramps and heavy periods, often with many clots. The cramps were strong around menstruation and ovulation. My periods were very irregular and could last anywhere from three days to two weeks. My cycle length also varied, sometimes eight weeks long, other times just three. 

I went to my doctor and they told me it was "just" period pains. They prescribed birth control, but since I have lupus and that puts me at an increased risk of blood clots, I couldn't take any pills with estrogen. I only had the option of taking the progestin-only pill.

It didn't help. The pain did not get better; in fact, it was now in my back, too. It also hurt to have sex and go to the toilet.

After explaining my symptoms and almost being in tears from sitting in one position for so long, my male doctor said, “Maybe this is just the level of chronic pain your body needs to get used to."

After repeatedly going back to my doctor about the pain, they finally agreed to refer me to a gynecologist. However, they were even more patronizing than my doctor.

He—the gynecologist—spoke to my mother more than to me and derided my pain. After explaining my symptoms and almost being in tears from sitting in one position for so long, he said, “Maybe this is just the level of chronic pain your body needs to get used to."

By that point, I knew that he wasn’t going to take my pain seriously. I had already been diagnosed with lupus, arthritis, osteoporosis, migraine, and celiac disease. He didn't know anything about my chronic pain levels.

Between 2010 and 2016, I saw four gynecologists. I was tested for polycystic ovary syndrome (PCOS) as well as endometriosis. I had been in the emergency room and to my doctor more times than I remember. I also tried three different birth control methods: two types of the progestin-only pill (many times), Depo Provera injections, and the IUD (which was a horrible experience for me).

In 2016, I’d had enough of the constant pain and no answers. Out of options and onto my sixth gynecologist, I brought up the possibility of having a hysterectomy. I’d mentioned it before, but it was never taken seriously. I was always told that we should try X, Y, and Z first. Well, I’d tried them all to no avail.

I convinced a different general practitioner to refer me to gynecology with the option of a hysterectomy in mind, but he said, “OK, but I doubt they will give you one.” His words were cynical, but since I was only 27, he understood how I would be viewed.

The misogyny that is present in a lot of the world has trickled into medicine.

My appointment with the new gynecologist was as unpleasant as the ones before it. When I said that I wanted a hysterectomy, I was told I was being irrational and emotional. The gynecologist, a woman, said that I was jumping into it without thinking it through properly—even though I’d already explained my case and years of pain.

I was repeatedly told that I was too young. I was asked to consider my life in a few years' time and was reminded that a hysterectomy was not reversible—as if I expected them to be able to reinstall my womb when I wanted a baby and then take it back out again! 

The harshest blow of all came when she asked, "What if you meet a man who wants children?"

I was sitting right in front of this doctor begging and crying, and she was putting the feelings of a fictional man before me. 

The doctor eventually agreed to put me on Zoladex, a monthly injection that induced chemical menopause to see if my body would benefit from having a hysterectomy. Another hoop to jump through, but I was willing to do it. It was tough on my body but it eased the pain massively.

In 2017 I finally got a hysterectomy—but the pain didn't go away. They had refused to take my ovaries out during the operation because of my age and the increased cardiovascular and osteoporosis.

Clearly, the ovaries were what was causing my pain. I still had painful ovulation and pelvic cramps, found sex painful, and had bowel symptoms. I was left on Zoladex for another four years, which was dangerous because of the blood clot risks associated with lupus.

Finally, in February of this year, I got my ovaries removed (a procedure called an oophorectomy).  

I was sitting right in front of this doctor begging and crying, and she was putting the feelings of a fictional man before me.

It was only when I asked my gynecologist about endometriosis during a telephone appointment back in August that she revealed that they had removed three lumps during my oophorectomy in February. I wasn’t told this at the time.

I’m still in pain now and was told that this could be because some of the endometriosis might have been left behind—an explanation that I would never have known had I not asked.

How the Gender Pain Gap Hurts

As I learned, the doctor’s office is not always a source of comfort for women. Instead, it can be a source of judgment and a place where we struggle to have our voices heard.

The misogyny that is present in much of the world has trickled into medicine. It contributes to neglect, ignorance about how symptoms can present differently in women and men, and missed and misdiagnosis of illnesses.

The doctor’s office is not always a source of comfort for women. Instead, it can be a source of judgment and a place where we struggle to have our voices heard.

Women who go to emergency rooms in the United States wait 16 minutes longer than men to receive medication for abdominal pain—and they are only 7% likely to be offered it in the first place.

In the U.K., women are 50% more likely than men to be misdiagnosed after a heart attack because the symptoms present differently in women than in men (who tend to have more "traditional" symptoms like chest pain). 

Women account for 78% of autoimmune diseases, yet they are the ones who struggle the most to be believed when they say that they have symptoms.

In a 2018 review, Samulowitz and colleagues found that men were viewed as "brave" when they sought help for pain, but that women were perceived as "hysterical, emotional, and choosing to not want to get better" when they did. They also found that women with chronic pain were more likely to be assigned psychological causes for their pain.

For gynecological symptoms, the situation is even worse. On average, it takes 8.6 years for a woman to be diagnosed with endometriosis. Studies have shown that 75.2% of patients report being misdiagnosed with another physical health (95.1%) and/or mental health problem (49.5%) in that time.

The U.K. Government All-Party Parliamentary Group on Endometriosis surveyed over 10,000 women about their experiences. Prior to diagnosis:

  • 58% visited a general practitioner over 10 times
  • 21% visited doctors in hospital 10 times or more
  • 53% went to the emergency room
  • 27% went to the emergency room 3 or more times
  • 38% said that they had had symptoms for 10 years or longer before receiving a diagnosis

It's been 15 years since I first started experiencing painful periods. While much of my pain has gone, I can't help but feel grief over the fact that I’ve lost such a chunk of my life to pain. There was also a huge period of time where I was told that my pain wasn’t valid and that took its toll on me physically and mentally. 

More than anything, I think of how many other people have gone through, or are going through, what I did. They are enduring their pain alone because they are denied care by doctors with misogynistic bias. 

The healthcare profession needs to take women’s pain seriously; so many of us have suffered—and for far too long.

6 Sources
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