How Living with Interstitial Cystitis Changed My Life

 By Emily Gammell

In this blog post, guest blogger Emily Gammell shares her story of living with Interstitial Cystitis, more commonly known as Painful Bladder Syndrome, which is a painful chronic condition affecting the bladder. September is Interstitial Cystitis Awareness Month and Emily is doing her part to raise awareness of this often undiagnosed and misdiagnosed condition.

In May 2018 I was diagnosed with Interstitial Cystitis (IC) at the age of 29. Shortly after being diagnosed, I described IC as a “life sentence.” Some people were confused by that statement because I did not look sick. I looked healthy and normal. 

But on that day in May I felt like I’d been run over repeatedly. I felt relief accompanied with confusion and fear. Relief because I had been validated; my pain was real. It wasn’t only in my head as my previous gynecologist had insisted. I was 27 years young when I was basically told I was “crazy” while I was living with what looked like post-menopause even though I had never given birth or undergone a hysterectomy. As I write this, I am now 30. 

Sadly, most women living with IC are not diagnosed for 8 to 10 years. Staggering numbers of these women are opting for extreme surgery like bladder removal, which is an outdated approach with no supporting data showing any improvement in quality of life. There is still no known cure for IC. 

I struggled with what seemed like urinary tract infections (UTIs) during most of my 20s, but the pain I endured was much more than that of a UTI. I had one negative culture test after another and took handfuls of pills. I was hitting a dead end, so I started doing my own research. That is when I found out about IC. 

Unfortunately, IC is not the only menace taking up residency in my body. I also have Pudendal Neuralgia (PN) and Pelvic Floor Dysfunction (PFD). My painful symptoms include, but are not limited to; vaginismus; vulvodynia; constipation; extreme pelvic and bladder pain; frequency, urgency, pressure and burning of my urethra and clitoris; trouble walking, running, standing, sitting and moving; muscle spasms within my stomach, bladder and pelvic floor muscles; heaviness within my pelvic floor; loss of appetite and weight loss; anxiety and depression; painful sex and loss of sex drive due to pain and depression; and increased sleep because of depression, anxiety, fear and sadness. 

It’s an understatement to say that my physical and mental health have suffered greatly. Thoughts of suicide due to pain, isolation, fear and the unknowns for the future of my life began to fill my head space. 

Thankfully, I’m one of the lucky ones who was able to find a urogynecologist to help me. He was the first person to help me gain relief. I have seen five other doctors from the day of my diagnosis, and they all confirmed my diagnosis. I now have a pelvic floor physiotherapist, gynecologist, urogynecologist, chiropractor and therapist on my healthcare team. 

I have done pelvic floor physiotherapy and taken countless prescription drugs and tried everything imaginable in the holistic realm. I do not use birth control as some doctors who specialize in IC feel it makes symptoms worse. Cannabidiol (CBD) and tetrahydrocannabinol (THC) are the only things I use for pain, and I am an advocate of these substances being made available and legal country wide. I’ve had amniotic allograft (stem cell) injections placed into both pudendal nerves and injections to relax my pelvic floor muscles. Chinese medicine has used the harvesting of amniotic cells from participating mothers for centuries and western medicine is finally giving it a chance. 

I’ve made many lifestyle changes that help me to manage IC. I now follow an autoimmune diet that helps to eliminate acidity (which causes chronic inflammation) within my body. I do not consume gluten, alcohol or caffeine. I drink only alkaline water as research shows disease has a hard time thriving in an alkaline pH. I’ve found my symptoms are much more manageable when all things are done in conjunction.

I’m sharing my story in hopes of helping even just one patient who feels held prisoner by their own body. To all IC, PN and PFD patients, I say: stay strong and keep fighting the fight. There is hope. I urge anyone suffering from a pelvic condition to reach out to me via email. I am more than happy to help guide patients toward the specialists who have helped me. 

In addition to her volunteer work as a women’s health patient advocate, Emily works with the Tennessee Growers Coalition in Nashville, a non-profit, non-partisan organization supporting pro-hemp advocacy, awareness and legislation. She can be reached via email at icpatientadvocacy@gmail.com and on Instagram at @icpatientadvocacy.

Thank you, Emily, for sharing your story of perseverance and hope with our readers.

If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others learn about your struggles and increases awareness and understanding. We will help promote your website and social media accounts as well as your favorite advocacy group. Contact us to get started sharing your story now!

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