What I've Learned - Suffering from 10 years of Interstitial Cystitis

My Journey with Urinary Tract Infections and Interstitial Cystitis

I used to keep quiet about my condition because honestly, I was embarrassed. I thought having yoni infections meant that you were unclean. I now know much better and this train of thought is the weight of society's conditioning. Let me tell you - absolutely anyone, anywhere, no matter your lifestyle, can suffer from Urinary Tract Infections (UTI) or Interstitial Cystitis (IC). One in two women will get a UTI throughout their life and often babies suffer from UTI's. They can affect absolutely everyone. On the other hand, the autoimmune disease IC is now more prevalent than diabetes. They are both now so common.

The Painful Side of UTI/IC

I’ve suffered from UTI/IC symptoms on and off every few weeks or month for the better part of a decade. And not just your regular burn-when-you-pee symptoms. I've had symptoms that were so painful they‘d wake me up in the middle of the night. Symptoms that come with excruciating pain and pressure in my pelvis, back and spine. I've completely snapped my collarbone in half in the past and UTI/IC is much more painful than any broken bones. Every time these UTI/IC symptoms struck I would lay on the shower floor crying with hot water pouring over my pelvis because this was the only thing that brought me relief. My partner, Guillaume, would often sit by the shower and hold my hand at all hours of the morning while we waited for the pain to fade. Sometimes it would last a few hours. Sometimes it would come in waves over a period of days. The hotter the water, the more relief it brought so it left a burning red patch on my belly. Our hot water bills were often obscene. This pain significantly decreased my quality of life, often left me in tears, avoiding sex with my partner, or avoiding travel because I was so afraid for this pain to be triggered. When these flare-ups occurred, I often called in sick to work, cancelled on friends and family, and was left feeling physically, mentally and emotionally exhausted.

What is a UTI

So let's rewind a little and take it back to basics. What is a UTI exactly? A UTI is an infection caused by micro-organisms (usually a bacteria called Escherichia Coli or E Coli) in any part of your urinary system. This includes your kidneys, ureters, bladder or urethra. UTI is technically what's known as cystitis and the most common and effective way to treat it is antibiotics.

The Antibiotic Cycle

Over a period of 10 years, I visited many doctors, specialists, gynaecologists. I had so many invasive procedures done of my bladder, kidneys and pelvis. And I was always consistently told the same thing - that there was no medical explanation and I'm likely one of the unlucky women prone to UTI's. When urine test after urine test came back negative for a UTI, I had some doctor's tell me the pain was 'in my mind'. But most doctors would write a repeat prescription for antibiotics and send me on my way. And that was that. After 10 years of heavily relying on antibiotics, I reached a point where I was suffering from these symptoms more and more frequently and antibiotics offered less and less relief. I had tried so many different types of antibiotics and often doctors would write me repeats to last the year. But eventually, they stopped working.

Searching For Answers and Learning About IC

I was exhausted. Why couldn't anyone tell me what was happening with my body? Why me? Surely I wasn't the only one experiencing this. So I starting sharing on social media about my symptoms, condition, talking to friends and doing my own further research. From this, I learned about Interstitial Cystitis (IC). IC is a chronic condition which can last for years or a lifetime. There is no known cause of it, no cure and it's challenging to diagnose. IC so very often mistaken for a UTI. It is caused by inflammation when nerve endings in the bladder become over-sensitised, causes scarring, stiffening and bleeding in the bladder. IC should not be confused with common cystitis, a bacterial infection of the bladder that is the most common type of a UTI. Unlike UTI's, interstitial cystitis is not caused by bacteria, nor does it respond to antibiotics. The real kicker here is that antibiotics, especially used in large doses for long periods, can actually make IC worse. Antibiotics also kill off 1/3 of your healthy gut microbiome. It’s like unleashing an atomic bomb in your gut. This can take months to build back and in the meantime, your immunity is weak and susceptible to inflammation and infection. Furthermore, 90% of your serotonin (your happy neurotransmitter) is produced in the gut. It's known that a poor gut health = poor mental health. For someone who deals with anxiety, this was a big wake up call too.

In one day social media had answered questions that 10 years of doctors couldn't. Since learning all of this and just how many women suffer from IC, my initial thought was "Fuuuuuuck You" to all my previous doctors and specialists who didn't even consider IC here. How is it that after all the appointments, procedures and scans, not one doctor mentioned the autoimmune disease IC? Was is that they didn't know about IC? Perhaps autoimmune diseases are in the 'too hard basket to treat'? But all I could think was 'what if every time a doctor offered me an antibiotic prescription, they had unknowingly been worsening my condition'? I felt like the medical system had failed me.

My last UTI/IC Flare Up Ever

After learning all of this I decided to take it upon myself, quit antibiotics and start off in search of holistic remedies to give both UTI and IC the boot for good and to heal my yoni. When my next UTI/IC flare-up came to visit. It was excruciating and so hard to mentally commit to not reach for antibiotics.

Instagram Story posted by @emmaceolin
Instagram Story posted by @emmaceolin

"Yesterday I had UTI or IC. I don't even know what to call it anymore. It was so painful I couldn’t sleep. It felt like my pelvis was going to explode. I felt it all up my spine. Warm water helps sooth. So I was laying on the shower floor at 3am. Guillaume sat by the shower and held my hand and we waited for the pain to subside and natural remedies to take effect. It felt like my body was detoxing after 10 years of antibiotics. Thank you to everyone who wrote in and shared your story, experience and advice with UTI and IC. One of the sisters said that the pain from her UTIs were comparable to childbirth. I’ve never made a baby so can’t compare. But you get the picture. It fucking hurts. I promise to pass all this info and advice on for those who are moving through the same thing. All these words and love on Instagram leaves me feeling so hopeful!"

What I've Learned

It's now been one year on since going holistic and ditching antibiotics. In this time, I've had ONE small and manageable IC flare-up in comparison to the myriad I would usually get over 18 months. I believe that initially suffered from UTI's, but somewhere along the way I developed IC and continued to feed the disease with mistreatment under the advisement of my doctors. I have nothing against medicine or antibiotics. I believe they're needed when they're needed. But since going holistic, quitting antibiotics, changing my diet, it allowed my body to heal the inflammation and balance, which allowed better management for my IC condition.

My Top Holistic Tips

These are my top holistic tips for IC symptoms and reoccurring UTI's that are no longer responding to antibiotics. These recommendations are compilations fro