Updated: Dec 7, 2022
This is a transcribed version of Episode 25 of the IC You Podcast. Listen to this episode here. I edited it to make it a bit more user-friendly.
Do you ever wonder if diet is causing your interstitial cystitis flare ups, or if it's something else?
Today I wanted to talk about some non-diet related triggers in relation to IC. What we know is that about 90% of people with IC have an extent of diet sensitivity. The thing is that there is likely at least one other trigger outside of diet that is causing a flare up or symptoms.
Usually, multiple triggers are at play and it could be very balanced between diet and non-diet or not very balanced. For me, stress is my biggest trigger, I have one or two diet triggers, and then my pelvic floor dysfunction plays a moderate role. You can break it down into a list of severity or percentages, whatever works for your brain to visualize this.
It's just important to realize that there are factors outside of diet that could be playing a role. So what I wanted to get into is the non diet IC triggers, so everything that could possibly be triggering you that is not related to your diet. In this post I'm going to dive into the top five non-diet IC triggers.
The Top 5 Non-Diet IC Triggers
The body's stress response is designed to protect and to help the body survive. When the body senses a stressor or a threat, the nervous system elicits the fight or flight response. This causes the brain to signal the endocrine system and triggers the immediate release of adrenaline and an increase in cortisol. These hormones speed up heart rate, breathing, reaction time, muscle contractions, and actions that are all designed to instantaneously provide the resources that your body needs to outrun this threat or this stressor, or get it under control.
This stress response is a good thing and can be even lifesaving when it works as it was designed, which was to be short, temporary, and sporadic. Prolonged exposure to the stressor causes dysfunction in your nervous and endocrine systems leading to chronic inflammation.
Stress = inflammation = pain and frequency or IC symptoms.
We can get stuck in this long term stress. With IC or another chronic illness, your body thinks that the threat is always there. So you can never get out of that fight or flight state or that cycle. With IC this can trigger tension in our pelvic floor.
Developing relaxation techniques, developing ways to cope with and be aware of it are key. Diaphragmatic breathing, meditation, and visualization can help. There are tons of apps out there that can guide you through a meditation or they can guide you through a visualization or a breathing technique. For example, my one client discovered that journaling was a great outlet for her. One of my other clients learned that taking a walk by herself works for her. We're going to call this your” you time”.
You need to treat that like it's a medication that was prescribed to you by a doctor. Stress management as a prescription
There isn't a ton of research surrounding the effect of hormones on IC. I've seen different research studies say that low estrogen is likely to play a role in interstitial cystitis. Also too much estrogen can play a role. Research isn't always going to point the same way as the next research trial.
Let's talk about mast cells. These are cells that the body needs to heal wounds and defend against pathogens and mast cells have been found in many bladders of IC patients. Mast cells are most known for their role in allergies and they are what the immune system uses to induce inflammation, to help with healing. This can be very helpful, except for when those cells misfire and increase inflammation, even without an injury.
Mast cells and bladders mean more inflammation, even if there isn't a reason for it. Higher levels of estrogen can make mass cells fire more often, which can cause more bladder discomfort for IC patients, as estrogen binds to mast cells and can cause issues. This could be why many IC patients report higher levels of pain during ovulation, since estrogen triggers ovulation and possibly more mast cells.
My recommendation is if you think hormones could be at play, track your menstrual cycle. If you can identify times during your monthly cycle when you're more likely to flare, like during ovulation, then you can know what times of the month to prevent flares by monitoring your food intake or your stress levels and any other triggers you can monitor those more closely.
What about those people you hear going into remission during pregnancy? Pregnancy remission can happen because the body initiates a response so that the mother's body doesn't reject the fetus. According to Dr. Theoharides, the change in the immune system is most likely what causes the remission that some patients experience. There are other autoimmune diseases like irritable bowel syndrome and fibromyalgia that are also prone to experience a remission of symptoms during pregnancy.
IC symptoms may happen later on in life when women enter menopause and their estrogen levels lower, even non IC patients can have some bladder symptoms in menopause, such as urinary frequency, urgency, pressure, and pain. This is thanks to the lower levels of estrogen impacting the bladder wall. With less estrogen, the mucus membranes in the bladder can become dry and more sensitive. Women who are menopausal can assume that if the skin on the outside of their personal area is dry, then so is the inside. And that could be contributing to IC symptoms. Something that can help is topical estrogen therapy, but there are many over the counter products that are designed to add moisture. I would say that you guys should check out the Interstitial Cystitis Network Shop. They have a variety of products for that.
Estrogen also plays a role in nerve endings and so for example prior to puberty, boys and girls have the same likelihood of developing chronic pain conditions, but after puberty women are two to six times more likely to develop a chronic pain condition than their male counterparts, as the increase in estrogen in females is one of the major differences during that time period. In general, pain increases when estrogen levels are low and progesterone levels are high. Estrogen levels are at their highest during pregnancy and childbirth, which could explain some of the decrease in symptoms during pregnancy.
There's actually a higher prevalence of seasonal allergies in IC patients than in the general population. A lot of people notice that if their doctor prescribes them a drug like hydroxyzine that they experience a positive effect in their symptoms. Their IC seems to calm down.
What you can do about it is you can chat with your doctor about trying something like hydroxyzine, you could try an over-the- counter antihistamine first, you could monitor pollen counts in your area, you could try a filter for your house and make sure to stay hydrated.
4. Pelvic floor dysfunction
So for this, I lumped a bunch of smaller triggers into one umbrella of pelvic floor dysfunction.
So first underneath that umbrella is sex. If it's penetrative sex, if it's non penetrative sex, it could irritate you whichever it is. It could be an immediate trigger, it could be painful during sex, it could be the next day, it could be very variable. For some people I've heard of doctors prescribing Valium suppositories to take a half an hour before sex. Another thing that could help is something like Botox, a more invasive type of solution.
I would absolutely encourage anyone listening to this who has flares after sex or during sex to try to work with a therapist and get the mental side of things in check. Know how powerful the mind body connection is. I would also recommend going to a pelvic floor physical therapist that is familiar with interstitial cystitis and pelvic floor dysfunction.
The next thing under pelvic floor dysfunction would be tight clothes. Anything that is constricting you and your pelvic floor can cause a flare if you're in the central sensitization subtype. Definitely try to wear loose clothing as much as you can.
Another thing that could contribute to a flare is sitting or standing for too long. So if you have pudendal neuralgia, this could come into play. Some people who sit in the car for too long can have a lot of issues or it can trigger a flare and then also strenuous exercise. So if you exercise really hard or you do heavy lifting or sprints that can also flare up some people. Not all, but it's definitely something to be aware of. Maybe you would need to do something a little less like a lower impact exercise or something that's shorter and less triggering for your bladder.
5. Scents and Fragrances
These can be irritating to anyone with IC and or vulvodynia. It's all related to the nerves. So any detergent that's scented, any dryer sheets, feminine products, tampons pads, body wash, perfume, body spray, any household cleaning products and candles. These can all be irritating to your nervous system.
If you're able to switch to scent and fragrance free products, that would be ideal. Especially if you're somebody with a strong sense of smell, in that subtype five of central sensitization, or have overlapping conditions.
I hope that me taking you through these top five triggers has been helpful and can open your eyes to really take that step back. I think everybody needs to do a full elimination diet, but I also think it's important to not focus only on diet and to focus on other triggers like the ones we just talked about that could be contributing to your symptoms.
Need help identifying your triggers? Apply for Road To Remission now and I can help you minimize your symptoms in just 3 months.