Earlier this year, my 14-year-old daughter had severe pelvic pain — enough to cause her to shiver, sob and be unable to stand upright. We headed to the emergency room of our local hospital. After waiting for three hours, we finally saw a nurse practitioner. My daughter’s pain was dismissed as period cramps, even though pain medication only brought mild relief for about 20 minutes.

We asked about having an ultrasound to check for cysts and were told ultrasounds aren’t available in the evenings of our major hospital. Half an hour later, an older man next to her was sent for an ultrasound.

Eventually we were discharged with her pain level still around a 7 or 8, and the pain chalked up to period cramps (even though she was on day four of menstruation).

Her health saga continued for six weeks of fighting our way from one medical provider to another to get answers. She had two more ER trips to a larger city nearby with children’s hospitals. Our best determination ended up being over-zealous nerves and her pain is not bladder related.

However, her story is just like so many IC patient stories. I’ve been that patient myself. I was actually the same age as she was when I had a pediatric urologist tell me all my issues were caused by me not voiding properly.

Sadly, a gender gap still exists in healthcare. I’m disheartened my young teen daughter has experienced this firsthand. But, I’m also glad to have experienced it enough myself to know I needed to keep pushing and self-advocating until we got her help. Our best help eventually came from a pelvic pain specialist in the city an hour from our home.

And I know we aren’t alone. Chances are very good a male presenting in the emergency room with pelvic pain would be treated differently. Studies back up these findings.

For example, women average a 65-minute wait before receiving pain medication for abdominal pain in the emergency room, while men average only a 49-minute wait.(1)

Gender Gap and IC

Studies show two to three times as many women as men have IC.(2) With a majority of patients being female, how does the gender gap in pain care factor in? It turns out, the gap still exists, according to recent research from the MAPP Research Network, which is a network of medical professionals who have been researching IC and pelvic pain since 2008.

Previously research showed men and women deal differently with IC, but new research looked at how often women with IC had their pain dismissed by medical professionals. In studying various groups of IC patients, researchers discovered women with IC had experiences of providers not believing or dismissing their pain.(3)

As a result of being neglected by their medical providers, women with IC used the following different strategies to try and get the help they need:

  • Seeing different specialists
  • Trying doctors to see whether they knew about and treated IC
  • Advocating for themselves
  • Managing their condition on their own
  • Doing their best to avoid the stigma of chronic pain
  • Crying
  • Choosing alternative medicine

The final conclusion of the study was patient and provider communication needs to improve.(3)

The Cause of the Gender Gap

While finding one definitive reason for women being treated differently by healthcare providers is impossible, some theories and facts certainly contribute to its cause. One of the first areas to look at is medical research. Men and women often experience symptoms differently for medical conditions from IC to heart attacks.

However, the National Institute of Health didn’t include gender as a biological variable in its funded studies until 2016.(4) Historically, medical research was based on studies of males — both human and animal. So, research didn’t factor in differences for women versus men.

For studies related to chronic pain, the numbers are more disparaging. Women make up 70% of patients with chronic pain, but 80% of pain studies are conducted on males. This comes in spite of studies showing the women feel pain more intensely than men, so logically they will have a different reaction and needs for management.(1)

Another possible cause comes from training. In a survey of nearly 2,000 medical students, 96% agreed understanding gender differences in health improves healthcare and should be part of their school’s curriculum. Yet, 63% of the students also agreed the majority of their curriculum is primarily related to males and only 31% said sex and gender-based curriculum was part of their education.(5)

What Patients Can Do

We certainly want to promote and see change in the medical community as a whole, but in the meantime, we patients have to have a plan of action. The best way to overcome the gender gap in healthcare is by becoming your own best health advocate. The following tips can help you advocate for yourself and the other females in your life.

Communicate.

One of the challenges that comes up in IC in particular is the embarrassment of talking about bladder symptoms. The best thing you can do is remain factual and honest with your doctor about what is going on. Be direct about what exactly is happening and how it is impacting your life.

(Read more: How to Talk to Your Doctor About Symptoms “Down There”)

Do your own research.

Your doctor and medical providers should definitely give you information about your conditions and any proposed treatments, but do some research outside of that as well. For example, when we were left without answers for my daughter, I dug into research and found a few things I was able to address with her doctors. At the very least, they could rule out things that didn’t pertain.

If there is specific research you want to discuss, print it out and bring it along. Just remember, however, you are not a doctor and haven’t been through medical school. Your own research can help you determine whether you’re getting good care or need to find someone else.

Take someone with you.

When you aren’t feeling well or are overwhelmed, you may need help speaking up for yourself. I’ve had a few appointments when my husband has spoken up on my behalf when I was downplaying symptoms and their impact on my life. I did the same for my daughter.

An added bonus of having someone else with you is he or she can help you remember what the doctor said as well.

Ask questions.

If you don’t understand what someone is saying to you or why they are recommending certain options, ask. That first ER visit with my daughter this year included a urine check. I had to ask to find out what they were screening for.

Maintain your own records.

This is especially important if you are seeing providers who are part of different networks or medical groups. When I’ve had procedures out of town, I always get a copy of my records for my local provider while keeping a copy for myself as well. When we went through the issue with my daughter this year, I kept a large envelope of test results and findings that we took along from one appointment to the next.

Don’t be afraid to get a second — or third or fourth — opinion.

Though a gender gap in pain management exists in healthcare as a whole, not all providers will ignore or downplay your pain. If you see a doctor who dismisses you, then move on to another one. I had a doctor a few years ago who insisted I could not be feeling the pain I was. Needless to say, I moved on, which led to a repair surgery for prolapse and me feeling much better in the end.

Don’t give up.

Not being taken seriously or finding answers for your pain is incredibly discouraging. I think at some point, most of us ICers question whether our symptoms are somehow all in our heads. I certainly have. When I saw my daughter start to do the same thing, I stopped that line of thinking in its tracks. You know your body better than anyone else. Keep going until you get an answer or treatment you feel comfortable with.

None of us want to be diagnosed with a chronic pain condition like IC, but so many treatment options are available, that we must persist to find what works best for us. Take a moment and feel your feelings of frustration and discouragement, then pick yourself up and keep going, because you are worth it!

(Read more: How to be Your Own Best Health Advocate)

References:

  1. Harvard Health Blog. Women and pain: Disparities in experience and treatment. Oct. 9, 2017.
  2. Windgassen S, et. al. Gender differences in the experiences of interstitial cystitis/bladder pain syndrome. Front Pain Res. Aug. 11, 2022.
  3. Brown VL, et. al. Believing women: a qualitative exploration of provider disbelief and pain dismissal among women with interstitial cystitis/bladder pain syndrome from the MAPP research network. Int Urogynecol J. Vol. 35, No. 1. Jan. 2024.
  4. National Institute of Health. Consideration of Sex as a Biological Variable in NIH-funded Research. June 9, 2015.
  5. Jenkins MR, et. al. Sex and gender in medical education: a national student survey. Biol Sex Differ. Oct. 2016.