Interstitial cystitis (IC) is a bladder condition that causes urine frequency, pressure on the bladder, and pain within the bladder (rather than when passing urine, as with cystitis). I’ve been having pretty heavy trouble with mine recently. Whereas I know what triggers my endometriosis, I find it much harder to identify the triggers of my IC pain – they seem to be constantly evolving and changing.
So, it’s time for me to be my own detective. Just as I did when my endometriosis pain returned, I’m tracking, researching, and observing the patterns of pain and IC symptoms in my body.
I’m currently studying to be a women’s health coach, and I’m repeatedly encouraged to become a detective of my own health. Not only is this empowering, but it also gives me a sense of control and responsibility over my health, and allows me to communicate my needs and concerns clearly to my healthcare professionals.
Following are some ways to get started on your own investigation.
Get to know your body
It took me much longer to discover I had IC than to be diagnosed with endometriosis. I had complained about my bladder symptoms years before my endometriosis was found, but after my diagnosis, I resigned myself to believing the bladder issues I was experiencing were linked to endo.
It was only when I got my endometriosis under control that I was able to notice a difference: My endo pain was very specifically linked to my period and felt like severe cramping; the other pain felt like it was isolated to my bladder and was a constant burning sensation.
Understanding the difference enabled me to investigate those distinct symptoms and begin piecing the puzzle together. Many of us with endometriosis have overlapping conditions, such as vaginismus, endometriosis, IC, and polycystic ovary syndrome. It’s really helpful to begin noticing how your body feels when the different symptoms show up so that you know what’s causing them.
This is probably the most important part of being your own health detective. Tracking is boring, yes, but it’s so powerful for discovering what’s helping and what’s worsening your symptoms.
In the past few weeks, I’ve discovered that eating raw red cabbage or sauerkraut for a few days in a row can really trigger severe IC pain for me. I’ve also discovered that eating these foods in small amounts, with a couple of days in between, is OK.
There are other foods that cause interesting patterns when eaten at certain times or in certain amounts, but I wouldn’t have noticed if I didn’t track my symptoms. (I will do this mentally if I can’t stop to write them down.)
Tracking doesn’t have to be fancy. Sure, get an app if it works for you, but if you’re not into apps, write it down in your diary or on a piece of paper, or put it in your phone somewhere. Write down what you ate, your stress level, and your symptoms, and take it from there. You might not notice patterns straight away, but stick with it and they’ll begin emerging.
Do the research
Once you’re armed with your tracking information and you know the symptoms and suspect the triggers, you can really get to work.
You can go straight to your doctor with the information, or you might like to empower yourself further with additional knowledge and information. Researching on the internet can cause a lot of confusion, but there are some really reliable resources out there, too.
First, try going to the charities and authority organizations for endometriosis or the disease you’re looking into. Then, I suggest looking into period and women’s health experts, who share a wealth of knowledge and information through their websites, podcasts, and books. I’m always a little hesitant with forums because I personally find they can overwhelm me and affect me emotionally.
The following links are to information from some of the best women’s health experts out there, who use evidence-based research to support people with endometriosis and other menstrual and hormonal conditions. Many of them have helpful quizzes that help you to understand what your symptoms are telling you!
Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.