Do men and women experience IC the same or differently? Understanding how male and female IC patients differ can help healthcare providers provide better treatment and help patients receive more effective care based upon their unique needs. Yet, only a handful of studies have looked at gender in IC treatment and experiences. A recent one was small in scope with only 37 participants, but its fascinating results highlighted some flaws within current IC treatment modalities.(1)

Symptoms and Diagnosis

The recent study showed that men and women reported a similar variety of IC symptoms, but they focused on different ones. Women were impacted by pain most while men were most impacted by frequency, especially at nighttime. However, both genders agreed IC reduced their abilities to work and participate in social activities. Struggles with sexual intimacy and family relationships was also common between men and women.

Of the 37 study participants, 27 were female and 10 were male. This breakdown alone shows a disparity in representation of both genders when it comes to IC research. In fact, even though as many men as women have been found to have IC or chronic pelvic pain in the past decade, men are seldom represented in studies.(2) In the past, researchers have said men are often misdiagnosed or undiagnosed with IC.(3) However, the 2022 study found women were diagnosed on average 7.44 years from the time their symptoms first started, while men were diagnosed an average 2.20 years from the time their symptoms first started.

Theories for diagnostic differences

There could be a variety of reasons the men in the study were diagnosed nearly four times sooner than the women. First, women have more options for pelvic pain causes than men, so perhaps it takes longer to narrow down exactly what is causing the problem. In fact, the study itself reported that both men and women said their diagnosis and treatment were trial-and-error based.

Second, gender bias in overall healthcare continues to persist with women getting less evidence-based care than their male counterparts with the same symptoms. This is further compounded by women having been excluded from many clinical trials for years because researchers struggled to control for the variable hormones in women.(4) (Ironically enough, males are vastly under-represented in IC-related studies.) So, it is possible that women going to their doctors with IC symptoms just aren’t being taken as seriously as soon as their male counterparts.

Another potential risk for gender bias comes from the vast difference in gender among urologists themselves. Only 10.9% of urologists in the United States are female — and that’s the highest number of female urologists in history.(5) Male patients may feel more comfortable talking about their symptoms with male doctors while male doctors may better understand the symptoms in their patients of the same gender.

Mental Health and Emotions

Statistically, both male and female IC patients experienced mental health challenges as a result of their health, but females were much more likely to notice and talk about it. Depression and anxiety were elevated in both genders. Anxiety was mild for men and moderate for women. Women were more inclined to notice a correlation between their emotions and their symptoms, and they reported greater feelings of being overwhelmed. In terms of emotion types, women focused on sadness, and men focused more on stress, worry, anxiety and anger.

Perhaps due to societal pressure and norms for men, male IC patients were much more likely to suppress their emotions, whether intentionally or not. However, this also resulted in men taking more pragmatic and practical steps like planning for managing their IC symptoms.

Women were much more likely to feel guilt over their IC symptoms and their impact on others than men were. In fact, men more easily advocated for their needs amongst peers and family compared to women who worried about inconveniencing others. This difference may be rooted in different coping strategies between genders.

Healthcare interactions

Study participants reported different healthcare experiences based on gender, which could certainly play a role in time to diagnosis and negative mental health impact. Though both genders struggled to find a knowledgeable provider, 90% of the men felt their symptoms were taken seriously. Men were also more likely to be actively included in the treatment decisions while women were more commonly dismissed by their healthcare providers. As a result, women felt more uninformed and a greater need to advocate for themselves. Some of the men, on the other hand, felt extra stress about being involved with treatment decisions because they didn’t know what was best. They were also more likely to report they were at the end of their treatment options, which is a difficult and discouraging place to be whether real or perceived.

One big difference for men and women in dealing with their mental health and emotions is how they perceived they were treated by healthcare providers.

“Men reported feeling believed, validated and supported by healthcare professional whilst women felt disbelieved and dismissed,” the researchers wrote.

This, the researchers speculated, could be because women were more emotional at their appointments. Other research shows healthcare professionals have a harder time responding clinically to strong emotions. No matter the reason, though, all the men rated communication with their healthcare providers as being positive while 84% of women felt dismissed in health care. This was especially true for female patients being treated for chronic pain. They reported feeling stigmatized by healthcare professionals.

Treatment Needs

The study also looked at treatment differences and similarities between genders. Many issues overlap — like a desire for better treatment. But, other challenges were identified and managing them could help patients have better outcomes. Men and women concentrated on different aspects of treatment. For both medical and self-help strategies, men focused most on practical solutions. They wanted to find ways to manage and/or improve their symptoms. Women, on the other hand, focused more on the need for social and emotional support for IC.

Ideas for improving IC treatment for men

Understanding how men respond to and manage IC makes it easier for healthcare providers to best meet their needs. Since they are more practical and less likely to discuss their emotions, explaining how emotional stress impacts their symptoms and the importance of its treatment for men would be beneficial. Managing stress is included in the AUA guidelines for treating IC, highlighting its importance.(6)

Compared to their female counterparts, IC male patients were very bothered by night-time voiding and the interruption to their sleep. Urologists could address this more in-depth with male patients by giving them practical treatment solutions.

Since men focus more on the practical needs and treatments for IC as problem-solvers, men might respond best and appreciate more practical treatments like bladder training. A benefit of men’s practical approach to IC is that it makes them more adaptive in managing chronic health conditions. That, in turn, can reduce feelings of overwhelm, which the men studied didn’t have nearly as much as the women.

Men also need to be included in more research studies and supported more as a whole within the IC community.(7) Including men would help more researchers discern difference between male and female IC patients and identify better ways to treat men.

Ideas for improving IC treatment for women

Knowing women are more likely to recognize the emotional and mental health impact of IC can help with managing their symptoms and treatments as well. While both male and female IC patients did their own research about IC and its treatments, women were less likely to focus on practical solutions and treatments. As such, healthcare providers could address more problem-solving and coping strategies with their female IC patients. Helping female patience understand the importance of trying more practical solutions could also be helpful.

Another area to improve on in treating female IC patients is being aware of gender bias (usually unintentional) within the healthcare system.

“These results suggest that gender health inequality may exist in the healthcare experiences of IC/BPS,” the researchers wrote. “Current practices seem to provide satisfactory patient-centered care for men and not for women.”

Training providers to not dismiss symptoms and women is important. Healthcare providers should also understand women may require more validation, empathy and support in order to receive better care and perceive a fulfillment of their treatment needs by providers. Gender bias is impacting the treatment of IC for many female patients and continues to need to be addressed within the healthcare community.

Moving Forward

Both male and female IC patients have challenges. Some of them overlap and some of them are unique to one gender over the other. However, both men and women with IC have the potential for better quality of life with the right treatment from healthcare professionals and self-help strategies.

References:

  1.  Windgassen SS, et. al. Gender differences in the experience of interstitial cystitis/bladder pain syndrome. Frontiers in Pain Research. Aug. 11, 2022.
  2. Suskind AM, et. al. The prevalence and overlap of interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome in men: results of the RAND Interstitial Cystitis Epidemiology male study. Journal of Urology. Jan. 2013.
  3. Arora HC, et. al. The enigma of men with interstitial cystitis/bladder pain syndrome. Translational Andrology and Urology. Dec. 2015.
  4. Paulsen E. Recognizing, addressing unintended gender bias in patient care. Duke Health. Jan. 14, 2020.
  5. Stephens S. Numbers of women in urology on the rise. Health eCareers. March 6, 2023.
  6. Clemens JQ, et. al. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome (2022). Journal of Urology. January 2022.
  7. Osborne J. The unique needs of men with IC/BPS. IC Network. May 5, 2014.