Interstitial Cystitis

There are so many under researched women’s health conditions, and lack of awareness can have repercussions when a serious disorder is brushed off as recurrent UTI’s or worse, being told it is all in your head from anxiety. This blog is going to focus in on a condition that affects over 3.8 million women in the US (only including cases that are actually diagnosed). Interstitial Cystitis (IC) is a condition of the bladder that causes flare ups of severe pelvic pain, pain with sex, and an intense urge to urinate. Symptoms that accompany the pelvic pain during a flare also include fatigue, body aches, and bloating. 

Since so many women are silently suffering with this condition with no idea how to manage their pain or predict a flare up, this blog is going to cover everything from root causes to how to get help and what you can do on your own to make day to day life easier. 

UTI or Interstitial Cystitis? 

While UTI’s are acute infections with a direct cause, IC is an autoimmune related condition, meaning that the body’s immune system is attacking the bladder. As discussed in my previous blog, the odds of having an autoimmune disease is disproportionately stacked against women, and IC is no exception. In true autoimmune nature, there is no direct, definite cause to IC but it has been linked to stress and holds comorbidity with other autoimmune/chronic illnesses. To further confuse things, chronic UTI’s can actually cause IC as a result of stress on the body and mind. 

Although symptoms can overlap, UTI’s are treated with antibiotics because they are caused by bacteria entering the urinary tract and causing an infection. IC on the other hand, has recurrent autoimmune flare ups and also can only occur in the bladder. If you are currently experiencing symptoms, a simple urine culture can rule out a UTI. 

If the culture comes back negative for pathogenic bacteria and you are suffering with these symptoms of pelvic pain, intense urge to urinate, etc. then it may be time to learn more about this disease. 

What Causes Interstitial Cystitis? 

In short, we don’t know. At least not definitely, but this is because there is no one size fits all response to this question when it comes to most autoimmune conditions. This is for many reasons, in part that they are influenced heavily by stress and trauma, part that they are under researched, and part that there are no true diagnostic tests to confirm any of these speculations. However, as women we know the power we hold by doing our own research and listening to our bodies when they not only scream at us but also whisper. When you first started to notice symptoms of IC, what was going on in your life? Were your boundaries being violated, were you experiencing crippling amounts of anxiety and a loss of control, were you diagnosed with another chronic illness around the same time? Now, when you have a flare up of your symptoms, does it echo this time in your past at all? Your body is constantly listening in on your mind and there are always traceable patterns. 

I wanted to begin with that because every other possible cause I am about to list is rooted back to this one cause…..stress. Here is what research has shown that can trigger IC: 

  • Chronic, untreated UTI’s 

  • Nerve damage 

  • Weakening of/damage to the epithelial lining of the bladder that allows toxins and irritants to enter

  • IBS. This theory can be due either to overall inflammation or “cross sensitization” where nerves supplying different areas impact each other 

  • Pelvic Floor Dysfunction (from pregnancy and vaginal birth, aging, surgery, endometriosis, trauma to the pelvis, etc.) 

  • Over production of Histamine linked to inflammation and hypersensitivity in the bladder 

The connection between histamine over production and IC is a growing field of research for this condition that may be a huge clue as to why women are suffering from this disorder. 

Histamine Connection 

Histamine is a signaling chemical released by the white blood cells in your immune system in response to the antibody IgE. This antibody is released because of a variety of triggers more commonly known as allergic reactions, such as pollen and certain foods. The hidden connection between histamine and IC lies within the intricacies of your nervous system. 

During bladder distention, histamine leads to sensory nerve hypersensitivity in the bladder. This same research even showed that a significant amount of nerve fibers that are typically “silent” were actually activated in the presence of histamine. If you are over producing histamine, such as from a condition like MCAS, you can see why your nerves would be overly sensitized, resulting in the constant urge to urinate and an inability to control your bladder. When activation of sensory nerve cell bodies are overly expressed, the sensation of fullness is exacerbated at the slightest feeling of distension/fullness in the bladder.  

A striking 22 out of 33 women who suffer from IC also have elevated levels of histamine. This really is too apparent of a correlation to be ignored. What do we do with this information though? For starters, try avoiding foods that contain high levels of histamine and see if you notice an improvement in your symptoms. Foods to avoid include: 

  • Fermented foods (yogurt, sauerkraut, soy sauce, etc.)

  • Alcohol, especially wine

  • Processed meat 

  • Avocados 

  • Spinach 

  • Preserved fish and shellfish 

If you notice that decreasing your intake of these foods decreases the severity of your flares, then histamine may be a major player in your IC. Aside from taking antihistamines for a flare up or after you are exposed to high levels of histamine, we can also take a look at your stress levels. Not surprisingly, MCAS is also related to high levels of stress or following a traumatic event in your life. This brings us to the next area of discussion surrounding nervous system dysregulation and IC. 

Nervous System Connection 

Your pelvic floor is heavily innervated, in fact, your bladder has the highest nerve density of any organ.  It has to be, considering what a sensitive and vital area of the body it is. Through a complex interconnection between your central nervous system, bladder, spinal cord, and pelvic organs, stress and repressed trauma can heavily impact the functioning of your bladder. When you are under chronic stress, your sympathetic nervous system (SNS), the “fight or flight” response,  is going to be in a constant state of underlying over stimulation. The link between IC, chronic fatigue, and fibromyalgia can be explained with this SNS theory as a result of chronic stress. Being in a state of fight or flight suppresses your parasympathetic nervous system, which would calm inflammation and promote relaxation and healing.

 Your body cannot function normally when it feels that it is constantly under threat, and this certainly applies to a sensitive area such as the bladder. As a result of this constant over stimulation, your bladder nerves become unable to “silence” themselves and you are left with chronic pain and a need to urinate at the slightest bit of distention. Over time, your nervous system essentially becomes “unregulated” and even the gentlest stimulation is interpreted as urgent and painful 

In order to decrease SNS stimulation, there are various things that can help such as meditation, deep diaphragmatic breathing, light exercise such as walking and yoga, avoiding trigger foods, and more. 

Treatment of Interstitial Cystitis 

IC is a very complicated disease. At first glance, it is a disturbance only to the bladder, but in fact it also is intertwined with the spinal cord, central nervous system, and pelvic organs. IC even often co occurs with other nervous system disorders such as: 

  • Fibromyalgia 

  • IBS

  • Chronic fatigue syndrome 

  • Syncope 

  • And more! 

I bring this up not to paint a bleak picture, but to make it clear that treating IC is not a one size fits all approach, as nothing really is. There can be many different causes related to a past trauma, emotional repression, physical and/or nerve damage, chronic stress, etc. 

However, there are symptom relief modalities outside of OTC pain pills or surgery that everyone can benefit from trying regardless of what is directly causing your flare up. 

  • Neuromodulation 

  • Demulcent herbs for soothing (aloe, marshmallow, great mullein, plantar, cleavers) have polysaccharides for healing bladder lining

  • Kava supplement for acute flare pain 

  • NAC supplement for protection of the epithelial bladder lining and reducing fibrosis

  • L-glutamine 

  • Vagal toning exercises. Humming, gargling water, cold water face splashes, gentle massage of face, neck or foot

  • Homeopathic remedies 

  • Quercetin -antioxidant 

  • Nettle -antihistamine 

  • Horsetail for tonifying bladder 

  • Anti inflammatory herbs like turmeric 

  • Avoiding caffeine on empty stomach

  • Avoiding alcohol high in histamines such as wine 

Outside of supplements, many people benefit from guided bladder toning meditations, acupuncture, pelvic floor therapy, nervous system healing, and more. 

IC is a complex disease state and you have a plethora of options at your hands to explore so that you can feel more at ease in your own body. Seeking help from professionals who know this area of the body like the back of their hand is vital as well. You deserve to be guided and held during such a stressful disease state, and remember that it is far more common than you think and nothing to be ashamed of. Holding on to shame and embarrassment of this condition will only repress emotion further and further and perpetrate a vicious cycle of inflammation. 

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The Gender Gap: Autoimmune Diseases