As a patient living with Interstitial Cystitis (IC)/Bladder Pain Syndrome (BPS), I want to openly share with you, the unfortunately dark, but very real side to the pain and flare ups associated with this disabling urinary condition.
In this blog post, I will discuss the increase in suicide risk in patients with Interstitial Cystitis/BPS and review a recent Canadian study conducted by Queens University that was published in June 2021, that examines the biopsychosocial predictors of this outcome.
First, what is Interstitial Cystitis (IC)/Bladder Pain Syndrome (BPS)?
IC/BPS is a chronic pain and bladder condition with painful urinary symptoms that lasts over 6 weeks in the absence of a urinary tract infection or any other clear cause.
You can educate yourself more on Interstitial Cystitis/BPS here
In my personal experience with this condition, the pain associated with Interstitial Cystitis/Bladder Pain Syndrome is crippling, and is a pain that has been labelled by some doctors as being more severe than bladder cancer related pain.
IC/BPS uproots and creates chaos for those suffering from the condition. It has a strong, stern grasp on every aspect and decision in your life.
I wouldn’t wish to inflict this pain on my worst enemy.
Below is my personal experience with suicide ideation due to the pain I live with from IC/BPS:
It was 3am on a cold January night in 2018, sitting on the shower floor, hot water pouring over me, and I was sobbing. The apartment was silent because of the fresh snowfall earlier that night and my partner was fast asleep.
This is where I had my first thought of suicide.
The pain was 20/10 and nothing I was doing or the pain medicine I was taking, was helping the sharp, shooting pain and spasms in my urethra, bladder, vagina, and lower back. I remember thinking to myself at that point, “I can’t do this anymore. I can’t make it 6 months until I see the specialist that MIGHT help me”. I wanted the incessant debilitating pain to end and go away for good.
Anger filled me (and still does), as I had gone through nearly two decades of being told my bladder symptoms and pelvic pain was nothing to be concerned with because they were common in many who identify as a woman. I went through years trying to find answers, help and guidance, with no luck.
When I take a step back and look at those dark stretch of thoughts in my IC/BPS journey, I see that I hit the point of believing suicide, to end the pain, was the best and only option. Because in all honesty, I felt like I exhausted all of my reserves: doctors, medications, support systems. I began to feel responsible for my pain, and the burden felt too heavy for me to carry.
The suicidal thoughts start to overwhelm your judgement and that is where the slippery slope lies.
I don’t have the magic equation on how I pulled myself out of that tub or how I keep pulling myself out of these holes but I do know it takes some resilience, support and after much research and education, I have learned that for best outcomes, taking a biopsychosocial approach in managing the condition, shows most beneficial for patients living with Interstitial Cystitis/BPS.
This does not downplay the need for more biomedical research on Interstitial Cystitis/BPS and more pain modulators, whatever that may be. Be it a cure, or at least some form of commonality between patients. This focus is a necessity as well.
However, the biopsychosocial approach suggests that our biology, thoughts, emotions, behaviours and social/cultural factors play an important role in overall human function when someone is living with chronic pain or illness.
Biological: Find, understand, try to treat the cause of the bladder pain (subtype: Hunner’s, bladder wall lining injury, pelvic floor injury, pudendal neuralgia, or multiple pain disorders/central sensitization) with medical treatments and medications.
Psychological: Managing emotions, mental health, loss of identity, anxiety, depression that come along when living with chronic pain and illness.
Social: Navigating through culture and social status. Building relationships and support system. Creating joy in your life through hobbies and things that make you HAPPY, such as spending time with loved ones rather than isolating oneself.
The medical community is learning that the past bio medical model alone doesn’t promote the avenues to reach best outcomes. Using this biopsychosocial approach in addressing, improving and coping with bladder symptoms shows promise for IC/BPS patients. But more research on this topic and the constellation of other factors affecting this condition is evidently needed.
New study: Biopsychosocial predictors of suicide risk in patients with interstitial cystitis/bladder pain syndrome [1]
Speaking of research, a 2021 Canadian study conducted by Dr. Dean Tripp et al. at Queen’s University, researched the biopsychosocial predictors of suicide risk in patients with interstitial cystitis/bladder pain syndrome. The study looked at 813 individuals who were assigned female at birth and were recruited from online IC/BPS support groups.
Participants in this study completed questions in regards to their demographics, pain, symptoms, and psychosocial factors in that individual’s life. Specifically, age, gender, ethnicity, country of origin, education, relationship status, occupational status, diagnosis, suicide exposure (i.e., “Do you know a family member or other person that has died by suicide?”), presence of insomnia, and smoking habits.
Results
This study resulted in a whopping 38.1% prevalence in suicide risk in patients with Interstitial Cystitis/BPS. This statistic is striking in comparison to the estimates seen in chronic back pain (19%) and patients with other various chronic pain conditions (14%). [2][3]
It is also important to note that in this study’s findings, the extent of disease and symptoms did not directly predict suicide risk but the other psychosocial predictors like exposure to suicide, psychache, hopelessness, and perceived burdensomeness proposed the highest suicide risk.
Based on my personal experience and as someone who is in the IC/BPS trenches, it is interesting to see the results because my first assumption, was that the amount of pain I was experiencing was the direct reason and trigger to those suicidal ideations that I spoke about earlier.
When you think about it, it makes sense.
The pain and suffering pushes us towards the psychosocial triggers that were noted in this study (psychache, hopelessness, and perceived burdensomeness + history of suicide) and then it is the psychosocial triggers, which ultimately leads to a higher risk of suicide for many.
It is sort of like the butterfly effect: the idea that a specific action can eventually lead to a significant difference to a system or pattern – such as that of a butterfly flapping its wings, creating wind, which eventually accumulates weeks later into a hurricane.
Our pain is the butterfly, and our emotions and psychosocial factors are the suicidal and stormy hurricane.
This study confirms that the emotions I feel are real and that suicide risk is an important topic of concern within the IC/BPS population.
We like to assume we have control and can predict the future, especially when it comes to our health and wellness. Jokes on us though, because we cannot. However, we can try to create favourable conditions to live alongside IC/BPS. This is where I believe the biopsychosocial approach to management is most warranted to help decrease the chance of IC/BPS taking the life of another patient.
As a patient I feel that there needs to be more focus and research created to be able to cater to the needs of those most at risk. In order to do this, IC/BPS management should move towards an approach that integrates managing the condition and the pain itself (finding the root cause), directly alongside the psychological well-being of the patient.
My hope is that this approach, and an increase in support can help decrease the chances of suicide in the Interstitial Cystitis/Bladder Pain Syndrome population. And my ultimate wish for those suffering, is to begin to understand that the pain does not have to devour every piece of you. Allow the pain to be your compass that brings you to your reason why and allow it to be a reminder of how valued your life is.
Have you battled suicidal thoughts? How do you manage to pull yourself through those valleys?
References:
1.Tripp, D. A., Dueck, J., Holden, R. R., Moreau, J., Doiron, R. C., & Nickel, J. C. (2021). Biopsychosocial predictors of suicide risk in patients with interstitial cystitis/bladder pain syndrome. Canadian Urological Association Journal, 15(12). https://doi.org/10.5489/cuaj.7337
2. Smith LD, Peck PL, McGovern RJ. Factors Contributing to the Utilization of Mental Health Services in a Rural Setting. Psychol Rep 2004;95:435-42. 23.
3. Calati R, Bakhiy CL, Artero S, et al. The impact of physical pain on suicidal thoughts and behaviors: meta-analyses. J Psychiatr Res 2015;71:16-32
