My Journey with Cushing’s disease
At 30 years old, I was fit, healthy and naturally a size 8–10. I knew my body well, which is why, when it started to
Interstitial cystitis (IC), is a chronic condition which causes pelvic pain, discomfort, and/or a frequent, urgent need to urinate. While there is no known cure for IC, there are ways to manage symptoms holistically which will allow you to live a normal life. Often it takes years for diagnosis, and when we get it, knowing there is no cure can make the journey to becoming symptom-free feel incredibly daunting.
IC doesn’t just affect the bladder; it affects the entire body on an emotional AND physical level. On an emotional level, it affects every aspect of our identity. For me, it affected/impacted on my psychological well-being, my sense of who I was (as I was so limited in what I could do), my role as a girlfriend and friend, my hobbies, my joy, my professional life, and more. I had no energy, I didn’t sleep properly, I couldn’t care for myself in the most basic ways, I felt as though I’d lost a big part of who I was.
The long and short of it is, nobody looked at all of my symptoms, at me as a whole individual person and the havoc IC was playing with me, in every sense. I believe the standard allopathic approach is simply not enough. It doesn’t make it easy for the whole body to be easily explored in the way it should be in order to see satisfactory relief and to understand the underlying reasons for urinary pain. Ultimately, it was this, what I felt was the failure of standard medicine to help me, that led to my own research into IC and an exploration of my own symptoms, which has resulted in my symptoms being totally relieved.
On the physical level, it is interesting to note that the American Urological Association updated their IC guidelines in May 2022, and declared IC a pelvic pain condition, not a bladder condition, which is a huge leap in the right direction. Very often, IC-sufferers have completely healthy bladders, which begs the question: why are we suffering from urinary symptoms? This is because there are external factors playing a role here and we need to be looking at them holistically.
When we treat IC and focus solely on the state of the bladder, we are missing the bigger picture, and in my opinion, this is the reason there is such a low number of success stories with existing treatments. You just have to look at any IC forum or group to find thousands of people suffering without receiving adequate treatment and getting minimal relief from their pain. If we are looking for more evidence that IC expands further than the bladder, then let’s break down some of the physical side/aspects of IC:
Urine comes from what we eat and drink, so it makes sense that diet plays a role. Most find some relief when they remove foods from the IC diet lists. The danger here is staying in restriction for too long, as people are often frightened to reintroduce any food in case the pain returns.
Typically, after completing a full elimination diet, most feel they have 5-7 foods they find more difficult to tolerate and that removal of all potentially bothersome food, as suggested, is not necessary long-term. I have noticed, anecdotally in the clinic, that many also struggle with sugar, in most forms to some degree, gluten and dairy.
A complete elimination diet, and food-sensitivity tests, should be conducted to gather the correct information for your body as every single person with IC should be treated completely individually. All patients with IC should have a specific diet created which works for their own body and symptoms.
We have cells that line the intestines which are bound together by ‘tight junctions’. These are designed to open and close for nutrients to be absorbed. The problems start to happen when this mechanism for opening and closing these junctions fails, and it is left open. If this happens, it means food particles, microbes, pathogens and toxins from the gut can enter the bloodstream (and by extension, the urinary tract). This can create a few problems for the body such as:
So, what causes these tight junctions to open? It can be:
It has been suggested that microbes may move from the gut to other parts of the body, such as the bladder, which can play a role in UTIs as well as IC. As mentioned above, IC patients have been found to have issues with irritable bowel syndrome (IBS) and IC has also been linked with autoimmune disorders which have been linked with increased intestinal permeability.
If we look deeper, more research has proved that IC patients have an imbalance in gut flora. They tend to be deficient in certain microbial strains such as O. splanchnicus, F. prausnitzii, C. aerofaciens, E. sinensis, and L. longoviformis.
There are two which stand out the
most: F. prausnitzii is one of the butyrate-producing bacteria, which is the fuel to keep the gut cells healthy. L. longoviformis plays a role in estrogen metabolism. Interestingly, hormones also impact bladder health.
Many people notice a change in symptoms according to their menstrual cycle. So, how does estrogen play a part in IC? Mast cells, which is what we need to heal wounds and defend against pathogens, and play a role in allergies, have been found in the bladders of many IC patients. The mast cells are necessary for the immune system to begin inflammation, which helps with healing. When those cells misfire, it can increase inflammation even without an injury. This means that if we have an elevated number of mast cells in the bladder, we can have more inflammation, even if it isn’t necessary.
Dr. Theoharis Theoharides, who has spent years studying the role of IC and mast cells, has found that elevated estrogen levels can increase mast-cell firing, leading to more bladder discomfort for IC patients. This could be the reason some find they have higher levels of pain during ovulation as estrogen triggers ovulation.
Something else to bear in mind is the role of estrogen as women enter the menopause, as estrogen levels lower/drop. Even those without IC can experience urinary frequency, urgency and pressure or pain, due to lower estrogen impacting the bladder wall, which can become dry and sensitive as it’s a mucous membrane. We can also develop dry skin in the vagina, vulva and urethra from this lowered estrogen, which can worsen IC symptoms.
A study in 2018 from the Stratton Medical VA Centre has discovered that these estrogen changes during a menstrual cycle can affect the smooth bladder muscle and the mucosal blood-flow in the bladder, which can contribute to IC symptoms. There is a lot more when it comes to hormones, but these are the most common effects of hormones with IC.
There are also other parts of the body which we ought to be looking at when relieving IC symptoms, such as the nervous system, the pelvic floor, autoimmune and co-existing conditions, and more. This is simply an introduction to understand how your IC doesn’t have to be affected by the bladder itself, even though you’re experiencing urinary symptoms.
Focusing on the entire body, understanding what other symptoms you are experiencing and how they could be playing a role in your IC is crucial. By optimizing the other areas of your body such as your gut, or balancing your hormones, working on your pelvic floor, or whatever you’re experiencing alongside IC, you are very likely to be able to control your Interstitial Cystitis and live normally. IC doesn’t have to be a life sentence; it is very possible to thrive and not just survive.
References:
Braundmeier-Fleming, A. et al. “Stool-Based Biomarkers of Interstitial Cystitis/bladder Pain Syndrome.” Scientific Reports 6 (2016): 26083. PMC. Web. 29 Apr. 2018.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4870565/
Fasano, A. Leaky Gut and Autoimmune Diseases Clinic Rev Allerg Immunol (2012) 42: 71. https://link.springer.com/article/10.1007%2Fs12016-011-8291-x
Latorre, M., Krishnareddy, S., & Freedberg, D. E. (2015). Microbiome as mediator: Do systemic infections start in the gut? World Journal of Gastroenterology : WJG, 21(37), 10487–10492.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4588071/
Levin R, et. al. Cyclical Estrogen as a Major Etiology of Interstitial Cystitis: A Theory and Review. Journal of Urology and Renal Diseases. Oct. 10, 2018.
Osborne, J. Genitourinary Syndrome of Menopause (GSM) & Estrogen Atrophy Common In IC Patients, IC Network.
Van De Merwe, J. et al Systemic aspects of interstitial cystitis, immunology and linkage with autoimmune disorders Int J Urology October 2003 [10: S35-S38]
Warren, J. et al Interstitial Cystitis/Bladder Pain Syndrome and Nonbladder Syndromes: Facts and Hypotheses Urology [78 (4): 727-732)
https://www.sciencedirect.com/science/article/pii/S0090429511006273
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