My Health Journey

I believe there are millions of (primarily women) silently suffering with bladder issues, who are being prescribed excessive antibiotics for what they believe are UTIs, taking their bladder specifically and their health in general, in the wrong direction. My intention with this blog post is to share my journey so that other women can perhaps better understand what’s going on with their health and dive a little deeper into their own self-care. This post covers interstitial cystitis bladder flares (what appears as a UTI), low-back pain, adrenal fatigue, and food sensitivities which are often occurring simultaneously whether the person realizes it or not. I’ll begin with my health & lifestyle history. Please bear with me as it helps to paint the bigger picture of what’s going on now. 

I am not a medical doctor and this is not intended as medical advice at all. I am simply sharing an exploration of my own health journey.

Remember the 90s water bottle trend? I was In middle-school at the time and I tried carrying a bottle of water with me everywhere I went. The problem was that it already seemed like I had to pee a lot so the idea of drinking more water wasn’t very appealing. What I didn’t understand at the time (I was just a kid) was that becoming dehydrated leads to concentrated urine which ironically, makes us feel like we have to pee all the time. Often, the answer is actually to drink *more* water, not less. Concentrated urine isn’t always obvious once it mixes with the water in the toilet bowl. I was out of touch with my body and thirst signals, often mistaking them for hunger signals. I was chronically dehydrated for the first 35 years of my life and didn’t know it. 

In my late teens, I had sharp pains in my yoni (vagina) one day while staying at my boyfriend’s family’s house. Linda, his mother, rushed me to the ER and while there, I was diagnosed with Pelvic Inflammatory Disease (PID). I was embarrassed when they shared with us that it could be sexually transmitted, but they weren’t really sure what caused it. I knew it wasn’t sexually transmitted but I think Linda was suspicious. Turned out PID was a catch-all diagnosis for we don’t really know what’s going on with your bladder. It goes by several other names as well including Painful Bladder Syndrome. 

Later on when I began experiencing occasional pain with sex, the OB/GYN would simply tell me “everything looks fine”. So, I just endured the pain during sex and put it to the back of my mind.

In my early twenties, I began exercising ~ big time. I was heavy and wanted so badly to look like Britney Spears. I trained for and ran a couple of full marathons (26.2 miles) and some half-marathons. I also got really into yoga and would sometimes do 3 hours of Bikram Yoga per day (2 back-to-back 90 minute classes of intense yoga in a 105 degree studio). I had constant pain in my lower back and muscle aches throughout my body, which I attributed to the training. I worked in a pharmacy at the time and saw that Ibuprofen 800mg three times a day was a common prescription. I started taking 3-4 ibuprofen at a time as it was very effective at numbing my pain. I jokingly called it “Vitamin I”.

Though I was doing all this exercising (and working full-time, studying at college, and socializing), I lacked the energy to fuel it. I discovered Hydroxycut, an over-the-counter diet pill, and would begin my day with it. I thought I had chronic fatigue syndrome since my body couldn’t keep up with my demands on it. Since I was still heavy despite all my exercising, I wanted to keep my calorie-count low and would sometimes consume as little as a thousand calories a day for weeks. Yes, I literally starved myself into losing weight, which would eventually come back, as my weight yo-yoed for all of my twenties. 

When I was eating, it was typically processed foods as I was single with very little time. I also appreciated that the number of calories was conveniently marked on the label because I was still living under the lie that calories in and calories out was all that mattered. Now I know that truth ~ calories don’t matter when you eat a healthy diet which actually consists of fruits and vegetables, appropriate protein, whole grains, very little sugar, and lots of water. Homemade food from whole foods; seasonal and organic if you can. Yes, I understand that it’s a commitment and a challenge in the current climate.

In my early thirties, I worked at a hot tech start-up in San Francisco as a Regional Operations Manager. I loved what I was doing and worked very hard. I also partied very hard. We took airplanes like taxis and drank ourselves into oblivion. It was fun and exciting, but also a complete wrecking ball on my health. 

I honestly did not realize that I was abusing my body with these behaviors. I actually thought I was getting healthy! I had no understanding of what a healthy lifestyle looks like and this was just how I operated as I tried to make my way through the world, young and deeply insecure. Living in a physically abusive home for several years of my childhood, I had largely dissociated from my body which set the stage for self-neglect and abuse.

When my mother died six years ago, I went through an indescribable amount of grief and trauma. My body was already so stressed from a terrible diet, pill-popping, and adrenal-busting activity levels that the emotional stress brought my health to a new low. I began bleeding outside of my normal menstrual cycle regularly, which eventually became very concerning to me. I ended up in a pattern of having a period, then two weeks later I would experience what felt like a UTI with bleeding, then two weeks later I’d have my period again, then the UTI… Every two weeks, bleeding, and this went on for months. It was scary and depressing.

While in the middle of a painful episode with a burning yoni, cloudy urine, frequent urination (getting up 5 times a night) with a weak stream and some occasional bloody tissue ~ I went to the CVS Minute Clinic for a UTI test. The urine test could not confirm a UTI (strange) which I was told was sometimes the case but offered antibiotics anyway. I was desperate for relief and I took them. They seemed to help in the immediate but I was back in the same loop within a couple weeks.

I finally saw an Integrative Doctor who ran a hormone panel to figure out what was going on. I was diagnosed with adrenal fatigue after my cortisol production came back *extremely low*. My adrenals had worked so hard for so long that they were out of gas. In retrospect, I believe I’ve had varying levels of adrenal fatigue since my teens when I was always searching for information on “Chronic Fatigue Syndrome”. Because of the instability and trauma of my childhood, my body was stuck in a stress response and couldn’t relax. We must be relaxed to properly digest food, absorb nutrition, and to heal our bodies.

In order to heal adrenal fatigue, you must avoid your food sensitivities as they create inflammation that then triggers a cortisol response. So, I had a food sensitivity test. I was shocked to find out that I had high reactivity to wheat, dairy, and eggs ~ 3 foods I ate every single day. I committed to avoiding these foods and was put on a regimen of detoxifying and tonifying supplements. I’ve had two different tests and recommend the Everlywell Food Sensitivity test. In my opinion, if the test is showing foods with very high reactivity, it is accurate. This information was essential for getting my health on track.

Food sensitivities come from a leaky gut. Leaky gut comes from frequent use of NSAIDS (Vitamin I, Ibuprofen), antibiotics, GMOs, exposure to pesticides on conventionally grown produce, and other toxins found in processed foods and in the environment (personal hygiene products, household cleaners, etc.). I had ignorantly consumed all of these, regularly. It’s important to understand and read labels! These chemicals alter our gut microbiome and damage the intestinal lining, allowing toxins to enter the bloodstream, causing inflammation, and damaging organs.

Our gut biome is a community of bacteria and other organisms that actually help us to digest our food, as well as complete many other vital functions. In fact, each organ has its own biome full of bacteria, viruses, and funghi, some of which are helpful and necessary for healthy functioning and others which wreak havoc on our bodies. Dysbiosis is a condition of a poorly balanced microbiome with too many pathogens and is at the heart of many chronic conditions.

But what about these UTIs?! I guess she was hoping that whatever reactions I was having would be solved with these dietary adjustments. Later I heard there is a saying with Functional and Integrative doctors, “If you don’t know where to start. Start with the gut.” So that’s what she was doing. Great practice as we are made of the foods we consume.

I had a good run of 4 months where I was eating clean, avoiding my food sensitivities, and resting as much as I could. My health improved dramatically ~ I lost 15 pounds, had lots more energy, and I was no longer having what I thought were UTI episodes. Then I got pregnant. 

My condition worsened while pregnant as my growing belly placed increasing pressure on my bladder and I gave into the roller coaster of horrible food cravings and aversions. I didn’t sleep for 9 months with as many as 10 or more trips to the bathroom each night. It was horrible. I had UTI symptoms of cloudy urine, frequent urination, burning sensation, along with some small blood clots. My midwife referred me to a urologist who shoved a rod up my urethra to look for a blockage, which was way off-base now that I know what I know about Interstitial Cystitis (more on that soon). I did not return to the urologist.

The midwives and doctors at the birth center prescribed a round of antibiotics and tried to get me to stay on a low-dose throughout the course of my pregnancy, which I refused. One midwife mentioned D-Mannose, a natural supplement made from fruit sugars, which I used to manage my symptoms as it helps to reduce inflammation in the bladder. She also mentioned that she thought I might have Interstitial Cystitis (IC). I’ve been researching that condition ever since ~ its telltale sign is chronic UTIs that cannot be confirmed with a urine test because it is not caused by bacteria. There is also usually a history of things like PID and painful sex, like with me. A better term for these UTI-like episodes is actually “IC flares”.

The condition of Interstitial Cystitis is marked by inflammatory flares where the bladder lining becomes compromised by the actual contents of the bladder (concentrated urine full of endotoxins created by the bad bacteria living in our guts). Leaky Gut, Food Sensitivities, Adrenal Fatigue, and Interstitial Cystitis are all related. I now believe that even my chronic low-back pain comes from the inflammation I’ve been experiencing in my bladder for nearly my entire life. After reading that UTIs account for more than half of all doctors visits, I believe there are millions of women with this condition which is being misdiagnosed as UTIs.

Even the urologist missed the IC diagnosis which seems very obvious to me (UTIs with no apparent cause + my health history). I am making this post so others may more deeply question what’s going on with their bodies, rather than relying on doctors and specialists, taking course after course of antibiotics and other medications that do not resolve underlying conditions of an unhealthy and inflammatory diet resulting in dysbiosis, affecting multiple organs eventually leading to this and other chronic health issues.

At this point in my journey, I am no longer flaring from anything food related despite occasionally eating foods I already know I’m sensitive to. I mostly try to keep a diverse diet to avoid too much sensitization to any one food. In nature, grains, fruits, and vegetables are available seasonally and so we can’t overdo it on any one food for long periods of time and our diet remains diverse. Now with grocery stores, processed foods, and easy long-distance shipping, we are out of sync with nature and we do usually overdo it.

Processed foods are addictive without providing nourishment. It would take another post to get into all the reasons why, but suffice it to say that living on ramen, milk & cereal, low cal Subway sandwiches, frozen meals, Slim Fast shakes, pizzas, and all the other crap I used to eat ~ all of that sets the stage for dysbiosis which results in inflammation and chronic health conditions like Interstitial Cystitis.

There is apparently no cure for IC but I believe that I can repair the lining of my bladder through proper hydration + a clean diet that honors food sensitivities  + probiotic supplementation (including fermented foods) + collagen-rich bone broth + medicinal plants + time.

I drink slippery elm tea daily which coats the weakened bladder lining and helps to protect it from the urine, which it also alkalizes to minimize the burning. I also take Garden of Life Raw Probiotics Vaginal Care, which have helped to eliminate food-triggered flares. I do still have hormone-related flares but they are much milder and shorter in duration. My quality of life has improved tremendously. 

Obviously there is a lot of personal information in here. I have found other testimonials to be illuminating in my own search for answers on this health journey. I pray that this post make its way to whomever needs to read it and that it serve the highest good. 

Thanks for reading. I hope it all makes sense! Apologies for typos ~ It’s hard to get long pieces like this out with a 17 month-old daughter. Feel free to message or comment with questions about anything here. 

Xo

2 thoughts on “My Health Journey”

  1. Hi Stephanie – I, too have had a journey with my bladder. It started in my 20’s when I became sexually active (honeymoon cystitis) although I recall once as a child getting a sponge bath before a doctor’s appointment (mom wanted me to be clean and shiny) and she washed my yoni along with the rest of me with a soapy washcloth. Well, the next day I felt the burn and I don’t recall taking antibiotics at that point, but that was the first time I felt that horrible burning sensation and the need to pee constantly.
    It turns out, after years of fighting UTIs, my problem was a short urethra. The cure for me has been the use of D-Mannose daily (as you mentioned) along with coconut oil as a personal lubricant (if it gets up there, it doesn’t cause problems) and also, a macrobid dose after sex (which doesn’t happen very frequently these days, so I don’t worry about overuse). I have been UTI-free for the last 8 years. 🙂

    1. Thanks, Patti. I appreciate your share. I’m glad you’ve been able to find effective ways of managing and happy to hear you’ve been good for 8 years ~ that’s wonderful!

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