Surviving IC & Endo: A Patient Story of Hope
By the time she came to the PelvicSanity Out of Town Program, Claire had been struggling with debilitating symptoms for 13 years - almost half her life.
Her pain had started in middle school, primarily centered around her menstrual cycle. While birth control pills masked her symptoms for several years, in her twenties pelvic pain and symptoms returned with a vengeance.
Pain with intercourse made intimate relationships impossible. She went through 'phantom' UTIs (UTI symptoms without an actual infection) and was prescribed round after round of useless antibiotics.
Claire visited doctor after doctor. She was dismissed, brushed off, prescribed more antibiotics (without an infection) and left without hope. She finally received an IC diagnosis, but no real help.
"Some days, I'd cry so hard I felt like a child walking around my house in uncontrollable tears....[it triggered] so much emotional suffering I withdrew from my friend circles, my performance suffered at work and I couldn't be happy."
At PelvicSanity, we've seen more than 100 patients in our Out of Town Program from all over the world.
"My first visit...made me realize this program would be worth every penny....Our initial consultation changed my life and validated so much of what I had suspected for years"
During her time in the Out of Town program Claire was seen by the PelvicSanity team for two hours each day. Her time was spent in hands-on treatment, education, developing a plan going forward, nutrition counseling, and strategies to get back to the things she loves.
The clinic recommended an endo surgeon we work with regularly and helped prepare Claire for excision surgery. She left having completed the PelvicSanity Out of Town Checklist, with a flare-busting plan and plan for treatment going forward.
Claire has been through so much, and we're sure many of you recognize aspects of your own story in what she's been through. It has taken so much courage and grit to get where she is, and we're so proud to be a part of her healing journey.
After completing the Out of Town Program, Claire wanted to share her story to inspire others and help everyone realize - no matter how long you've had symptoms - there's always hope for recovery and relief.
See her entire story - in her own words - below!
Who are We at PelvicSanity?
At PelvicSanity, it's our mission to support patients with pelvic pain and pelvic floor symptoms, regardless of where you live. We can help with:
In-person treatment for those in Southern California at the PelvicSanity clinic
Immersive Out-of-Town program for those able to travel
Remote Consultations to get you expert 1:1 help, advice and an action plan
A Facebook support group for patients called Finding Pelvic Sanity.
How I’m Surviving the “Evil Twins of Pelvic Pain"
The worst thing about having a chronic pain condition is that no matter how hard you try, you can’t run away from your own body.
It forces you to think more conceptually about problems - the fact that many problems in life can either be resolved by running away, money, talking it out, taking the time to get over it, or just simply rolling up your sleeves and fixing it. With a chronic pain condition, you are stuck in this endless loop where your usual problem-solving tactics won’t work. You live in your body 24/7 and never get a break from the pain. It doesn’t matter how good everything else in your life is - your pain goes everywhere you go, even if it’s a beautiful destination or with the people you love most. And fixing it is far from simple. It makes you realize that health is truly wealth - and the blessing of being able to feel no pain in your body is an important key to happiness in your life.
My pain started when I was in middle school. I was awkward, obsessed with boys, and trying very hard to fit in at a fancy private school that I was lucky enough to attend on a full scholarship. And once a month, my menstrual period would absolutely debilitate me. As a 13-year-old, I would have days where I could not get out of bed due to the searing pain running from head to toe. Menstrual cramps so bad I would sink to the floor crying and begging my mother for the heating pad. It felt like a monster ravaging my body from the inside, and pain episodes would last several hours at a time. And then there was the blood. Heavy bleeding that soaked through my shorts, onto the chairs in math class. Blood so bad I had to wear two overnight pads during the day and change them constantly, always carrying an extra sweater in my backpack in case I needed to tie it around my waist. My period was something to be feared - and trying to live a normal teenage life on top of it was hard. I made up excuses for why I had to miss swim practice every month. When I sometimes had to run off to throw up, I said I must have eaten something bad. No insecure middle schooler wants to admit to her peers that her periods are debilitating, as potentially having the whole school learn about your heavy bleeding would be deeply mortifying.
Around 9th grade, the fainting spells started. First I felt dizzy, then I would start losing my vision, and next thing I’d be passed out on the floor. I didn’t think it was related to my periods because it would happen anytime of the month. I would wake up on the floor after regaining consciousness, my head throbbing from whatever object it had hit during my fall. It was terrifying and I had no idea what was happening to me.
My mother took me to the doctor where I underwent blood panels and other tests. My iron levels came back extremely low, and I was diagnosed with iron deficiency anemia. Iron deficiency anemia occurs when your body doesn’t have enough iron to produce hemoglobin, which prevents adequate oxygen from reaching the brain. It can cause dizziness, headaches and fainting, among other symptoms. A common cause of iron deficiency anemia is excessive blood loss, and women with heavy menstrual periods are at high risk. We determined that was my case. And that was also the first time I heard the word “endometriosis”.
“You probably have endometriosis based on your symptoms, but you are too young to get a surgery. We’re going to put you on the birth control pill to make your periods easier,” the doctor said. Luckily, my mother took the time to educate me on endometriosis because she’d had it as well. At 27, she underwent a laparoscopy to remove it after suffering years of pelvic pain, heavy periods, debilitating menstrual cramps, and other symptoms. She was able to relieve her pain and have children after that, but since it may be a hereditary disease, she warned me to keep it on my radar.
The birth control pills solved my pain for ten years. I finally could live my normal life during my periods, with less bleeding and minimal cramping. My iron levels slowly returned to normal and the fainting and dizziness stopped. In high school and college, my period became a small part of my life and the spells of debilitating pain became a distant memory. I felt happy in my body and never had to worry about where the heating pad was. My only problem was recurrent UTIs but they could always be solved with a quick round of antibiotics. I never imagined that one day several years in the future I would feel like I had a UTI every single day of my life.
When I was 24, the birth control finally stopped shielding me from my symptoms. It started with periods that would last almost two weeks. They weren’t painful, but I became concerned that I’d be bleeding for longer than usual. I was dating someone but we agreed to be casual - so I kept my walls up and avoided topics of conversation that felt deeply personal. Rather than share the extent of my anxiety around the bleeding, I made excuses - saying I was “busy” so I could hide how long my period was lasting.
The symptoms started to pile up. I started bleeding every single time after sex, whether I was on my period or not. Even though the blood would stop after a few minutes, I grew concerned. I went to the doctor about it, and they couldn’t figure out what was wrong after conducting many tests. I got an ultrasound which came back with zero abnormalities. I decided it wasn’t that bad - at least I wasn’t in pain, but perhaps I would switch into a different birth control and see if that solved the problem. At this point in my life, I had completely forgotten what endometriosis was. My mother and I weren’t very close anymore, and my sex life was never a topic of discussion between us.
My friend was on the high-hormone continuous birth control pill Seasonique. She only got her period four times a year and didn’t have any side effects. Since my main concern was bleeding and I wanted to limit it as much as possible, I decided to try this pill as well. I was optimistic that perhaps this would solve my problems.
It didn’t. I still bled after sex. One day, I woke up feeling like I had a raging UTI. I was peeing every hour, had a burning feeling in my pelvic floor, and wondered how I got a UTI after being diligent about urinary care. I wound up at the doctor’s office again that afternoon where they ran urine cultures. And thus began several months of chronic pain yet testing negative for absolutely everything.
For five months, I visited doctor after doctor about my symptoms. Every day felt like I had a UTI and the strange bleeding patterns continued to stress me out. I saw gynecologists and urogynecologists with 30 years of experience. I was tested for every infection it could possibly be. I was diagnosed with a yeast infection even though the tests were negative and the medication did nothing for me. I was diagnosed repeatedly with “I don’t know what’s wrong with you but here’s a brochure on how to manage bladder symptoms. Stop drinking coffee and alcohol.” No one (including me) thought it could be the birth control pills, since I had been on birth control pills for 10 years and they had never caused a problem before.
The panic rose each week that this continued. I’d come home crying from these inconclusive doctor appointments, feeling so hopeless that no one could help me. My close girlfriends knew about my struggles and tried to support me but no one had ever experienced anything like this. A UTI that wasn’t a UTI?
After extensive Googling, I finally learned about interstitial cystitis (IC) and realized I likely had it. IC is a chronic condition characterized by pelvic pain and urinary urgency and frequency. It can have a significant impact on quality of life because it feels like a daily bladder infection and there is no cure. The American Urological Association states “the effect of IC on psychosocial functioning and quality of life are pervasive and insidious, damaging work life, psychological well-being, personal relationships and general health.”
I stopped dating altogether because my chronic pelvic pain and subsequent hunt for answers was too much to handle. I wanted to focus on my health without worrying about pleasing another person, and trying to hide it was exhausting. It would take some time before I finally learned that the right partner would accept me for everything I am, including my chronic pelvic pain and that I would never have to hide it from him.
My IC was constantly at the forefront of my mind. I always had to make sure a bathroom was near, I completely avoided men and sex, I constantly tried supplements to help with bladder pain, and I became depressed. I was also starting to bleed a lot, despite still being on the Seasonique birth control pills. I bled for four weeks straight, heavy bleeding that soaked through my skirt at work despite wearing a super tampon. I knew something was horribly wrong. I went to a new doctor to talk about getting off birth control, and also mentioned my bladder symptoms. She asked me to do the math. How long after starting the new birth control did my bladder symptoms start? I gasped when I realized it had only been a two-week difference. She explained to me that sometimes, birth control pills can trigger interstitial cystitis symptoms, especially if they are high-hormone. The irregular bleeding was also a clear side effect of my birth control and I definitely needed to get off. I chose to stop birth control altogether and just have my “natural” periods.
The bladder symptoms cleared up within two months. I had my body back. It was the happiest I’ve ever been. It’s a unique form of happiness, to know what chronic pain feels like and to finally be out of it. I didn’t have to worry about finding the closest bathroom. I felt like I had a bladder of steel again. I felt no pain or burning. When I finally had sex again, I didn’t bleed. I was thriving because things were finally back on track.
However, my period started giving me problems again several months later. I told myself I’d rather have heavy periods a few days of the month than deal with IC every single day, so I refused to get back on birth control. I remembered how debilitating my periods had been as a teenager, but at 24, these were a little better. And the bleeding was nowhere near what it had been while on Seasonique. One Sunday in October, I was flying back across the country after a work trip. I felt incredibly nauseous and dizzy, and wondered if it was plane sickness even though I had never gotten sick from a plane and there was zero turbulence on this flight. I carefully got up to use the restroom and realized that my period had started. Could these be period cramps? Everything was churning in my stomach and I felt a searing pain, but I was surrounded by strangers and didn’t want to bother the male flight attendant over my menstrual cramps. Once again, my people-pleasing self did not want to burden others, despite truly needing help.
The plane landed and I was still in pain. I didn’t want to get up but it was my turn to get off. Holding onto everything I could as I walked off, I made it to the first chair available at the gate. Sinking down, I opened my suitcase, found the Advil, and downed several pills. I sat in that gate seat for 20 minutes, staring at the planes taking off out the window. Telling myself this was momentary pain and going to pass. Reminding myself that I would take this any day over IC symptoms. It finally passed, and I got back up on my feet. Feeling back to normal, I called an Uber home from the airport and chalked it up to just my period. And life carried on. I would have momentary episodes of horrific period pain but their temporary nature didn’t cause me to stress.
After 7 months of no bladder symptoms, I got a UTI. Just a regular you-didn’t-pee-when-you-should’ve UTI, that was validated by positive urine cultures at the urgent care office. I wasn’t worried because my actual UTIs had always gone away with antibiotics. Fear crept in when I finished the antibiotics course and the symptoms had only worsened. And when nothing improved after the second antibiotics course and the urine cultures became negative, I started to panic.
Luckily, I knew the name of the monster I was facing this time and immediately went to doctors, including a specialist in IC. However, I was gaslighted into believing that it was still an infection. One just kept prescribing me antibiotics, which I refused. The IC specialist told me I didn’t have IC - this was just residual symptoms of the UTI. During our 8am appointment, she said I was the “easiest patient she was going to have all day” and that I “probably didn’t need to see her ever again.” Frustrated, I tried a third round of antibiotics but each pill felt like I was throwing another log into the raging fire on my pelvic floor. I knew these doctors were wrong. I went back to the IC specialist each month, and it took 5 visits for her to finally diagnose me with IC and believe that it was not an infection. She did not treat me with much respect, failed to listen to me, and got angry when I saw other providers. Looking back, I wish I had not wasted so much time believing that she was my only lifeline.
In the summer of 2022, I hit my lowest point in this medical journey. I felt as though I was trapped in a deep, dark hole that I could not climb out of and more hopeless than I’d ever felt before. In July, when I got my period one morning, I could not stand up for hours due to the intense nausea and had to lay in a fetal position, willing the pain to stop. When I finally felt strong enough to rise, I got dressed for the day and made my way downstairs. However, my vision started to black out and I could feel myself starting to faint. I sat down immediately and waited for the dizziness to pass, to prevent myself from landing on the floor. There was no way I was going to work that day. When I regained my vision, I carefully made my way back up to my room – and promptly vomited. The only word I could think about was “debilitating.” My period was once again absolutely debilitating me. I knew this was likely endometriosis, but brushed it off as a problem I’d handle “later” because I wanted to resolve the IC first and didn’t want to handle two pain conditions at once. I didn’t understand yet that the two conditions are in fact, extremely related.
Some days, I’d cry so hard that I just felt like a child walking around my house in uncontrollable tears. The pelvic pain would continue daily, and it would trigger so much emotional suffering that I withdrew from my friend circles, my performance suffered at work, and I couldn’t be happy. My wonderful boyfriend supported me more than I could have ever imagined, but our relationship and intimacy certainly suffered too. I beat myself up over the UTI that had triggered the IC symptoms, and it took a while to realize that my pelvic floor dysfunction was not my fault.
It was then when I picked up The Interstitial Cystitis Solution by Dr. Nicole Cozean and started pelvic floor physical therapy in my city. The book empowered me with the many answers behind my pain and I could finally understand IC more comprehensively. My local pelvic PT is an incredible doctor who truly cares about her patients’ recovery and can help me feel better with each visit. She gives me tools and exercises to relieve symptoms and we work together on loosening my tight pelvic floor muscles so that I can slowly regain control over my body. Unfortunately, we are limited by the time and frequency of our sessions due to insurance regulations and the nature of her clinic, but I am eternally grateful to have her on my team.
I was curious about Dr. Nicole Cozean, so I looked online at PelvicSanity’s website. I stumbled upon their out-of-town program, which provides you with 1-3 intensive weeks of daily physical therapy and targeted treatment to manage your specific condition. The program is not cheap - and growing up in a family that had limited disposable income, my mindset was naturally hesitant. I also did not want to take time off work, because I thought I could keep going at my high-pressure job. However, as the weeks went on, I realized how desperately I wanted my life back and to dedicate my time to fighting my pain. I thought again about the word “debilitating.” I needed a roadmap to get out of this, and knew it was a no-regrets decision. Plus, I had coincidentally grown up in Southern California and the trip doubled as a way to come home and see my family.
My first visit with Dr. Nicole Cozean made me realize this program would be worth every penny. She took the time to get a comprehensive history of my symptoms and answered every question I had. I came into the session expecting to only discuss my IC, but she also wanted to know about my periods. In detail. Afterward, she calmly asked a question that none of the gynecologists had ever asked me: “Have you heard about endometriosis?”
I learned that IC and endometriosis are closely linked with a great deal of symptom overlap - in fact, they are often called the “evil twins of pelvic pain.” About 40% of patients with interstitial cystitis are also diagnosed with endometriosis. Dr. Nicole explained that I likely had it based on my symptoms and my multiple female relatives with endometriosis. She told me about the differences between excision and ablation surgery, and how it was so important to find a proper endometriosis excision surgeon. Our initial consultation changed my life and validated so much of what I had suspected for years.
I spent two weeks at PelvicSanity and got more out of it than I could have imagined. They helped me understand the root causes of my pain - the specific nerves, muscles and organs that were all contributing to my daily agony. I was so lucky to work with Dr. Mallorie who empowered me with the tools and resources to control my symptoms and combat flares. Together, we determined strategies for how I could resume activities that I missed greatly in my life and she worked on me daily to reduce pain with hands-on physical therapy. We also worked on nutrition counseling to incorporate an anti-inflammatory diet into my routine. And when I got my endometriosis excision surgery scheduled, she spent extensive time teaching me how to prepare.
I left the program feeling more hopeful than ever before. My pain was fully understood, I had a customized recovery plan, and an incredible team behind me. Interstitial cystitis and endometriosis are going to be lifelong conditions, and I never expected PelvicSanity to “cure” me. But they gave me the tools and resources to mitigate my pain. If I have a flare, I now understand exactly why it’s happening (i.e., something specific I ate) and know the stretches and exercises to reduce it. My next menstrual period was the easiest one I’d had in years, because I finally knew how to combat cramping and prevent it from uprooting my daily life.
As I await my endometriosis excision surgery, I know that health will always be my top priority no matter what. I cannot just “live with my pain” and will do whatever it takes to regain a pain-free body. We only get one body and we rely on its functionality every single day of our lives. For those who suffer from endometriosis, interstitial cystitis, or other pelvic pain conditions, I urge you to go seek help (and look into PelvicSanity). And do not give up. It is going to be a long road. Do not be afraid to switch doctors if one is not helping. Educate yourself as much as possible on your condition. We all deserve the ultimate freedom of feeling good in our bodies, and life is too short to suffer from these treatable conditions.
Dr. Nicole Cozean is the founder of PelvicSanity Physical Therapy in Orange County, CA. PelvicSanity treats patients from all over the world with remote consultations and the Immersive Out of Town Program. She also runs Pelvic PT Rising, training other pelvic PTs to better serve patients.
Named Physical Therapist of the Year, Dr. Nicole is author of the award-winning book The Interstitial Cystitis Solution and the first PT to serve on the ICA Board of Directors, Her passion is helping those with pelvic health issues - regardless of where they live - find lasting relief.