I was TIRED of constantly being on antibiotics. One new prescription after another only for the infection to return in a couple of weeks. It took me 7 YEARS to understand what was happening with my body. Learn from my mistakes.
I was drowning in unnecessary antibiotics. This last UTI episode lasted 2 months and the last month I was given 15 different prescriptions in a span of 30 days. I knew there had to be a solution. Life shouldn't be this painful for a 22 year old.
My First Urinary Tract Infection
I was 15, sitting in my Geometry class, taking a test and had to excuse myself to go to the bathroom. When I relieved myself, barely any urine came out and it burned like I had never experienced before.
To add to my confusion, as soon as I sat back at my desk, I felt the urge to urinate again. After getting up a second time to use the bathroom and the same events followed, I knew something was wrong. One of my friends had had a UTI before and I knew my symptoms we're what she described. I told my teacher what was happening, left school early and went to the doctor. From there, I had a new UTI every 3-6 weeks for years. It slowed down for a while in college, but this past year they've been more frequent again.
Many of my urine cultures had come back negative for growth (meaning no bacteria was found) but I was told there could've been small amounts that the culture wasn't finding and to finish my antibiotics anyway. To find the root cause of this, I decided to be a responsible adult and find a Urologist. He performed many tests including the very uncomfortable cystoscopy (a bladder scope). I was told there was nothing physically wrong with me and I'm just "prone" to getting infections.
Re-Occurring, Chronic Urinary Tract Infections
I was in and out of the Urologist's office 1-3 times a week for months. Each time with no new information or answers. I felt lost, alone, and in excruciating pain 24/7. It got to the point that I was taking 3x the maximum dosage of Azo (Pyridium) which is terrible for your kidneys. Some days I couldn't get out of bed. I'd sleep through the whole day just to avoid the pain. After my last visit to my urologist, he recommended I be admitted to the hospital to see an infectious disease doctor.
From my hospital visit, I learned that there was no present infection in my urine or anywhere in my body. They found no bacteria in my urine and no elevated white blood cells similarly to some of my past urine cultures. Confused by this, they called in a Urogynecologist (Urologist & Gynecologist). She came to see me while I was in the hospital and she told me she believes I could have Interstitial Cystitis which has all the same symptoms as a UTI, but isn't caused by bacteria. Now, this was a HUGE mental shift for me. I was convinced for 7 years that I was suffering from UTI's and we just couldn't find the right antibiotic for this current infection, but I was wrong.
Interstitial Cystitis (IC)
What is IC and why have none of my doctors ever mentioned it?
Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe pain. The condition is a part of a spectrum of diseases known as painful bladder syndrome. It is regularly mistaken for UTI's (Mayo Clinic).
If you've EVER had a culture come back negative but still felt as if you have an infection, there's a possibility you're suffering from IC. IC symptoms appear when you're having a "flare" meaning your bladder lining is inflamed. Many things can trigger a flare, including certain foods, activities, allergies, soaps or perfumes, constipation or even stress. Spicy and acidic foods or a food allergy are the main culprits food-wise. Using perfumed soaps or douches can cause irritation and trigger a flare as well. Constipation and stress place more pressure on the bladder which can trigger or worsen your symptoms.
Unfortunately, IC is incurable, but it is treatable. Since being diagnosed with IC, I've started cutting out certain foods, taking supplements, practicing yoga and relaxation techniques, and receiving bladder installations. All have greatly improved my symptoms.
Very little is known about IC and it's still being researched. This diagnosis didn't even exist 10 years ago. As doctors learn more about this chronic illness, hopefully, they will find a cure and more treatment options. If you think you could be suffering from IC, please go see a doctor and DO NOT let them tell you, you are "too young" to have IC. I am 22 and have probably had this since I was 15 or 16.
I am not a medical professional. I'm simply sharing my story in hopes of helping someone else suffering from IC.
Want to learn more about Interstitial Cystitis?
You can read more about it here
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If you're struggling with IC or true UTI's, I feel your pain and I'm here for you. Please reach out to someone because you are not alone and it can be difficult to deal with this by yourself.
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