Learning to Listen to my Body - My IC Story

My name is Mel.

I'm certain I'll shed a few tears while writing this because it means reliving two of the hardest seasons of my life. But I want to tell this story. I want to share it with other women who may find themselves in the same situation—women who feel the same despair I once felt and can't yet see the light at the end of the tunnel.

Because I couldn't either.

I'll try to keep this brief... although there's so much to say, I could probably write a novel.

It all started in 2011, when I was 22 years old.

One morning I woke up with urinary urgency. Like most young women, I assumed it was a simple UTI. I went to my doctor, they ran tests, but found no signs of an infection. They sent me home with an antibiotic anyway.

By the end of the week, I thought I was starting to feel better. Then, the day after I finished the medication, my symptoms came back with a vengeance.

Little did I know that I'd spend the next two years using the bathroom more than 60 times a day and living with constant bladder pain that no medication seemed able to touch.

Eventually, I was diagnosed with Interstitial Cystitis (IC). At the time, it felt like a catch-all diagnosis for unexplained bladder pain and urgency.

But here's something I want you to remember:

An unknown cause doesn't mean there isn't a cause. It simply means the cause hasn't been found yet.

Over the next two years, I tried just about everything my doctors recommended.

One urologist spent maybe two minutes with me before telling me to take over-the-counter Cystex (which I had already been taking) and to eat more potatoes for the "roughage."

I left that appointment in tears... and with a $380 bill.

Next came Elmiron.

It was supposed to help my bladder pain. Instead, it made my hair fall out and thinned my blood so much that even a pinprick wouldn't stop bleeding. I stayed on it for several months because I was desperate for relief, but eventually I gave up. At nearly $500 a month, it wasn't worth it for me. Years later, I learned the manufacturer was facing lawsuits alleging serious vision problems associated with the medication. Looking back, I'm grateful I stopped taking it when I did.

Then I was prescribed amitriptyline for chronic pain.

It's an antidepressant that's sometimes used to treat chronic pain, but for me, it just made me feel weepy. It didn't touch my bladder symptoms.

After that came bladder instillations.

Twice a week for several weeks, I'd pay $50 a visit to be catheterized while a numbing solution was placed directly into my bladder.

It never worked.

Not once.

Finally, I underwent a bladder hydrodistention—a procedure where the bladder is stretched with fluid while the doctor examines it.

Afterward, I was told my bladder was cracked and bleeding. Looking back now, I suspect much of that damage may have been caused by the stretching itself, though I can't say for certain.

For weeks afterward, I urinated blood.

It felt like I was peeing razor blades.

When I told my doctor how much pain I was in, he simply shrugged and said, "It doesn't help everyone."

I wasn't given any pain medication.

Years later, after reading more about the procedure, I learned that while discomfort afterward is expected, severe pain lasting for weeks is not typical. Whether something went wrong or I simply had an unusually difficult recovery, I'll probably never know. What I do know is that I came out of that experience feeling worse than when I went in.

By that point, nearly two years had passed.

I'd been poked, medicated, catheterized, scoped, stretched, and experimented on.

And I hadn't experienced a single ounce of lasting relief.

I was exhausted.

I was discouraged.

I felt like a guinea pig.

So I stopped.

I stopped going to doctors.

I stopped trying new medications.

I stopped chasing treatments that only seemed to leave me with more pain than hope.

The entire time I was dealing with my bladder issues, I was also having very obvious digestive problems. I had IBS symptoms, episodes of pancreatitis, and food seemed to move through me without being properly digested. If I ate carrots, they would literally come out looking like bright orange mush—as if they had barely been digested at all.

Through all of it, not one doctor ever made a connection between my digestive issues and my bladder pain.

But I couldn't shake the feeling that they were related.

So I started researching on my own.

I read everything I could get my hands on. I found countless stories of people who had improved their IC symptoms through holistic approaches, and while I knew everyone's experience was different, it gave me hope. If other people could find relief, maybe I could too.

I decided to stop focusing solely on my bladder and start looking at my body as a whole.

I switched to a whole foods diet.

I started practicing yoga.

Within five months, I experienced a significant reduction in my symptoms—something I hadn't achieved in two years of doctor visits, medications, and procedures.

Then I started noticing patterns.

My bladder symptoms would improve during my menstrual cycle.

They consistently got worse after drinking my "healthy" spinach smoothies.

My feet would tingle after I ate white rice.

When I was stressed, my teeth would tingle.

It all seemed incredibly bizarre, but I couldn't ignore what my body was trying to tell me. I didn't understand why these things were happening, but I knew there had to be some kind of underlying connection.

As time went on, my symptoms continued to improve.

I discovered that foods high in oxalates consistently made my bladder pain worse. (Interestingly, more recent research has explored oxalates as one of several possible factors that may contribute to symptoms in some people with IC.)

I also found that eating home-fermented foods dramatically improved my digestive symptoms.

Little by little, the constant bladder pain and urgency faded into the background.

It never disappeared completely, but I could comfortably go an hour or two without needing a bathroom. That may not sound like much, but when you've spent years sprinting to the restroom every 15 minutes, it feels like getting your life back.

For the next decade or so, I lived with only mild flares. Nothing I couldn't tolerate. Eventually, I forgot just how bad the pain had once been and simply got on with my life.

Then, in 2024, everything started to change.

I got COVID, but my experience was nothing like what I expected. I never really had the typical flu-like symptoms. At first, I thought I was having asthma because I couldn't seem to catch my breath. Then, a few days later, my head felt incredibly floaty, almost like I wasn't fully present.

Not long after that, the insomnia started.

It wasn't just a few restless nights. I was sleeping maybe three hours a night, if I was lucky. I later learned that sleep disturbances are common after COVID, but at the time none of the doctors I saw seemed to consider that possibility. After nearly a year of barely sleeping, I started having panic attacks.

Once again, I found myself trapped in the same cycle I'd experienced in my twenties—seeing doctor after doctor, leaving without answers, and driving home with another bill and tears in my eyes.

During one appointment for my insomnia, I asked my doctor if hormones could be playing a role. I'd been noticing some unusual menstrual symptoms, and there were times—usually during my period—when it felt like my cervix was almost falling out... if you catch my drift.

She told me it sounded like a prolapse.

But because I hadn't had children, the conversation ended there.

I left feeling like my concerns had been brushed aside.

About two years later, I went on a fair ride. When I got off, I suddenly had an overwhelming urge to pee—but I couldn't.

At first, I wondered if I was just pee shy, even though I'd never had that problem before.

The urgency never went away.

As I searched for answers, I came across stories about amusement park rides occasionally aggravating underlying pelvic floor issues or bringing attention to symptoms that were already developing. I don't know if the ride caused anything, but I do know that after that day, my bladder symptoms escalated rapidly.

The pain and urgency kept getting worse until I found myself right back where I'd been in 2011.

It was hell.

And I was terrified.

Not just because I was in pain, but because I was afraid no one would be able to help me.

Unfortunately, that fear wasn't unfounded.

Many of the doctors I saw wanted to repeat the exact same medications and procedures that hadn't helped me the first time. The thought of going through all of that again filled me with dread. Looking back, I think I was carrying a lot of trauma from everything I'd experienced in my twenties, and I simply couldn't bring myself to repeat it.

Eventually, I had to take FMLA leave from work because my symptoms had become so debilitating.

One thing that was suggested this time—something no one had ever mentioned back in 2011—was pelvic floor physical therapy.

I committed to it for three months.

I didn't notice much improvement, but I did notice something else.

Certain exercises consistently made my symptoms worse.

I had a constant feeling of pressure at the front of my vagina that wouldn't go away.

If I lifted something heavy, it felt almost like a dry tampon was slipping out.

Crunches and other exercises that increased pressure through my abdomen almost always triggered a flare afterward.

Even eating a large meal made it feel like my abdomen was pressing down on my bladder.

The more I researched, the more I wondered if there was some type of pelvic support issue contributing to my symptoms. Whether or not that explained everything, I became convinced there was a muscular component that hadn't been addressed.

At the same time, I noticed other strange symptoms.

For nearly a year, I had what looked like tiny grains of sand and large flakes of tissue in my urine.

Every time I mentioned it, I was told it wasn't concerning.

Maybe it would have been easier to dismiss if I hadn't also been living with severe bladder pain and relentless urinary urgency.

Another thing I couldn't ignore was that my bladder pain completely disappeared during my period.

Every single month.

That seemed significant.

Then something else changed.

Years earlier, fermented foods had dramatically helped my digestive symptoms.

Now, they made the burning worse.

It felt like my body had changed, and I knew I was dealing with something different than I had before.

I started to notice what felt like possible connections between insulin, histamine, estrogen, and oxalates. I began reading about how these systems can interact with the body and potentially influence inflammation, energy regulation, and urinary or muscular symptoms in some people.

At the time, none of the doctors I spoke with seemed familiar with those kinds of connections. But I also came across research and emerging theories suggesting that conditions like interstitial cystitis may involve mast cell activity in some cases. Mast cells are part of the immune system, and they can be influenced by things like allergies, environmental triggers, diet, stress, and trauma responses.

With that in mind, I decided to try antihistamines.

I did notice a difference.

It wasn’t a complete change, but it felt like something shifted. Looking back, I started to wonder if I was dealing with both a metabolic component and a muscular or nervous system component—though I can’t say for certain which came first. What I do know is that they seemed to interact with each other in a way that kept my body stuck in a cycle of stress and pain.

As I continued working on my health through somatic practices—gentle yoga, stretching, and physical therapy—I began noticing something interesting.

When I was stressed or intensely focused, I would sometimes feel a burning sensation in my bladder.

At first it felt random, but over time it helped me see a pattern: my nervous system seemed deeply involved in how my symptoms presented.

As I continued researching, I found pelvic floor specialists and clinics that also described the role of the autonomic nervous system in pelvic floor dysfunction, particularly how chronic stress responses can contribute to muscle tension and pain cycles.

Around this time, I also tried an online herbal supplement that was marketed for hormone balance.

Within the first week, I was surprised by how much my symptoms shifted. At that point I had been dealing with jaw pain, hot flashes, mood swings, severe anxiety, and urinary pain and urgency. Within the first couple of weeks, many of those symptoms began to ease.

One thing that stood out to me was my jaw pain. I hadn’t realized how much tension I was holding there until it started to improve. Later I learned that estrogen and progesterone can influence how the body processes pain and tension, and that chronic muscle guarding—whether in the jaw or pelvic floor—can sometimes show up together in patterns of stress.

For me, it felt like pieces of a larger puzzle were starting to connect.

For the next two years, I focused on a diet low in oxalates (which are associated with kidney stone–like symptoms in some people), low in histamines, and based mostly on whole foods. I also continued doing physical therapy exercises on my own at home.

I paid close attention to my body and the signals it was giving me, and gradually adjusted my routine based on what seemed to help or worsen my symptoms.

Slowly, I started noticing changes.

Two hours between bathroom trips became three. Then four.

Other chronic pains I had lived with since my 20s also began to ease—joint pain, back pain—things I had almost stopped questioning were suddenly gone.

Where I Am Today

Today, I’m generally able to go three to four hours without needing the restroom. If I have a flare, I can often look back and identify what may have triggered it.

I move more easily in my body than I have in years, and I’ve learned how to release tension in my hips in ways I never understood before.

I’ve also come to realize how deeply stress and the nervous system can influence physical tension in the body. The psoas and surrounding hip muscles, for example, are closely connected to the body’s stress response, and for me, chronic stress seemed to show up physically whether I was consciously aware of it or not.

As I’ve healed, I’ve been able to reintroduce more flexibility into my diet as well. I still generally prioritize low-histamine and nutrient-dense foods, but I can now enjoy treats in moderation without triggering a flare the way I once did.

Even as long as this story is, I know I’ve only shared a fraction of the details.

Hip and bladder pain are incredibly complex. That complexity is part of why I believe they are often difficult to treat within conventional systems that may not always look at the body as an interconnected whole.

What I’ve learned through my own experience is that the body is constantly responding—not just to physical inputs, but to stress, environment, and lived experience. And while every woman’s journey is different, I believe we have more capacity than we’re often told to support our own healing through awareness, regulation, and care.

If this story sounds familiar, I hope it brings you a sense of hope and recognition. You are not alone. Your experience is real, and there are often many layers worth exploring with the right support.

If you’d like to follow along, I’ll be sharing more about women’s health, somatic practices, and the tools that have helped me along the way through my newsletter, YouTube, and future classes—both online and in person.