Chronic pelvic pain casts a veil over the color of life, leaving everything a shade less vibrant. It muffles the sounds around you. You watch those around you and wonder if they too are moving through life with faded colors and garbled sounds.
Chronic pain is a constant distraction, holding half your mind hostage as you struggle to be fully present. You wonder if you’ll ever be able to fully join the living. You pretend, you perform, you smile, desperate to at least appear normal. It occurs to you that others may be doing the same. And you begin to suspect, maybe you aren’t alone.
Jump To Section:
- Chronic Pelvic Pain Is Not A Diagnosis In Itself >>>>
- The Back Story To This Back Story >>>>
- Finding Compassionate Care For Chronic Pelvic Pain >>>>
- Finding The Right Care >>>>
- Pelvic Floor Physical Therapy For Bladder Nerves >>>>
- My Main Takeaways >>>>
Chronic Pelvic Pain Is Not A Diagnosis In Itself
If you take nothing else away from this story, let it be this:
If a diagnosis does not seem to fit, keep advocating for yourself with medical providers to find the true root of your symptoms. You will eventually peel back the layers of the onion to find the core. With this message in mind, let’s get into it.
My UTI and chronic pelvic pain story began at the age of 17. After confirming a misdiagnosis of interstitial cystitis and fighting to find a set of practitioners who gave me the care I deserve, I found some answers, and seemingly against all odds, effective and accurate treatment.
As I continued to fight for a diagnosis, multiple hypotheses were offered by various practitioners along the way. My first urologist thought I might have interstitial cystitis. My pelvic floor physical therapist noted that I broke my back and had a compression fracture on my L-2 vertebra, and this may be causing nerve compression and bladder dysfunction.
A psychotherapist thought I had a pain syndrome from the trauma of my first experience with pelvic pain and UTI without support or medical intervention at 17. A primary care doctor thought it (and interstitial cystitis as a whole) was just anxiety. But none of those leads resulted in a cure.
I spent 13 years of my life living with chronic pelvic pain and countless urinary tract infections.
I had severe chronic depression, anxiety, and suicidal thoughts very much so driven by living with this pain and finding no help in the medical system.
I spent much of this time believing I could not heal. This was confirmed time and time again by a medical system that makes it overwhelmingly difficult to find doctors who will spend the time and energy that’s necessary to solve and treat these types of challenging cases.
But it’s been over a year since I’ve had a UTI that required antibiotic treatment. My chronic pelvic pain is reversed at last, following the right diagnosis and treatment via surgery.
In short, the recipe for my recovery has been:
- Continuing to fight for the right diagnosis, and not wasting time with doctors who weren’t taking me seriously
- Clearing chronic infection with antibiotic bladder instillation treatment, administered via self-catheterization
- Mental health therapy to uncover and heal from trauma that led my whole being to believe I deserved this and couldn’t heal
- Pelvic floor physical therapy that has focused on restoring mobility to my back and reducing nerve tension so nerve signals allow for proper pelvic muscle function
- Consultation and surgery with an endometriosis specialist.
The Back Story
I contracted my first UTI after having sex when I was 17. I had no idea what a UTI was, and I was too scared to tell my intensely conservative/religious mother that I needed to see the doctor. I went to Planned Parenthood on my own and requested full STI testing, without discussing my symptoms. The test came back clear, but my pain persisted.
I realize now how incredibly lucky I was that it did not develop into a kidney infection at that point. For the next 13 years, my severity of pelvic pain would ebb and flow between feeling like I might have a UTI developing at its best, and fiery, sometimes bloody, gut-wrenching urinalysis-verified bladder infections requiring antibiotic treatment at its worst.
“Thanks to my upbringing and no answers from doctors, I came to believe at my very core that this condition was divine punishment for pre-marital sex that I would just have to live with. Each time a doctor told me everything looks healthy and normal, this belief would be confirmed.”
There were times that I was certain this pain would eventually lead me to end my life due to the emotional toll it was taking on me and the threat it posed to ever having a healthy, intimate relationship. I no longer believe this.
Taking My Treatment Into My Own Hands
Once I began my undergraduate degree in Utah, I was about 2 years into my recurrent UTI and chronic pelvic pain journey. I saw a gynecologist on my own, and my pelvic exam was normal except that my vaginal skin appeared to be “easily irritated.” The doctor wrapped up the appointment by telling me that psychosomatic symptoms can feel very real and cause real pain. It was deeply invalidating and humiliating.
After several repeats of similarly unhelpful attempts to find medical care without answers, I found myself shelling out my part-time college student wages to the world of home remedies, diets and supplements, which led to hundreds of dollars of credit card debt.
I was taking my health into my own hands with varying degrees of relief. My life and time was measured in bladder pain and infection flare-ups.
Finding Compassionate Care For Chronic Pelvic Pain
Dozens of bladder infections and one kidney infection later, I was at year 7 of chronic urinary dysfunction. My bladder secretly had a stranglehold on my life, though I worked hard to appear functional and healthy.
“I decided to try again and see a urologist, who for the very first time let me know I am not alone in my experience. She made me feel heard at a doctor’s office for the very first time.”
She put me on a year of prophylactic trimethoprim to see if this was a chronic infection, and it helped. I had a full year without a single UTI! The daily bladder pain didn’t go away, but it hurt less.
At the end of that antibiotic year, I got another UTI shortly after stopping antibiotic treatment and was back to where I started. My urologist did a cystoscopy and saw a patch of mild bladder irritation in my bladder lining. She told me about interstitial cystitis, and said that’s what I probably have.
I was initially elated. I thought I had an answer. But over time, my interstitial cystitis diagnosis felt wrong. Treatments weren’t helping, and I was finding it to be a major barrier to further investigation.
So Close, But Not Quite – Pelvic Floor Physical Therapy For Interstitial Cystitis
During the 10th year of chronic pelvic pain and recurrent UTI, I found myself with the most intense flare up of daily pain that I had felt thus far. I felt like I had an active urinary tract infection for weeks, but urinalysis tests kept coming back negative. This landed me in pelvic floor physical therapy (PT) for the first time.
My pelvic muscles were in spasm. It took me two full weeks to learn how to fully relax my bladder. This brought the pain down. I simultaneously went back to the world of home remedies and took a high-quality, high-PAC cranberry supplement, aloe vera, and started acupuncture. For the first time, I was improving without antibiotics.
And then abruptly, I had a sledding accident that caused an MCL tear and a tibial plateau fracture. This quickly ended my pelvic floor physical therapy. Instead, I began knee physical therapy. I was nervous about another chronic pelvic pain flare-up or UTI. So just in case, I kept up the cranberry supplements and relaxation techniques and thankfully they helped. By some miracle, I continued to enjoy a period of relative freedom from bladder hell.
Return Of The Burn, With A Vengeance:
Enter September 2019, the 11th year of chronic pelvic pain. After a severe post-intercourse UTI that ended months of what I considered to be remission, I found myself back at the level of the flare-up that led to my first experience with pelvic floor PT.
Every time, and I mean every time, my husband and I would have sex, an aggressive UTI followed. Instead of antibiotics bringing me back to a 1/10 on the pain scale as I had expected, I was only coming back down to a 4/10. I was desperate, miserable, and depressed once again, but motivated to find real answers.
I tried to connect with several mental health therapists, but didn’t find the right one until the 6th attempt, which was around year 12 of this journey. Step one to my healing was building the emotional resilience to keep fighting for answers. I worked through several modes of mental health therapy that included Eye Movement Desensitization and Reprocessing (EMDR).
I started finding hope. I began to believe that I could heal, and most significantly, I stopped blaming myself. My therapist helped me trust my body and its messages, and to keep trying.
Finding The Right Care for Chronic Pelvic Pain
I found two doctors through the Live UTI Free Community who together, ordered PCR urine testing that found persistent, low-grade infection. I was prescribed 6 cumulative weeks of antibiotics administered directly into my bladder via self-catheterization. This is also referred to as antibiotic bladder instillation.
My chronic pelvic pain improved. I started taking methenamine hippurate daily to prevent re-infection, but my post-intercourse pain was still feeling like a major setback each time. Thankfully, I was finding that the post-intercourse pain only lasted 24-48 hours.
Then, my knee started hurting again whenever I ran; and it turned out to be the best pain of my life.
The Beginning Of The End of Chronic Pelvic Pain
When I returned to my knee physical therapist, her tests included a nerve function assessment, where she tapped the inner part of my left ankle. I couldn’t feel her touch on my skin. She immediately asked what I did to rehabilitate from my back break injury when I was 14 years old. My mom had taken me to the chiropractor twice after getting my back brace off. That was it.
Turns out there are lots of bladder nerve roots around where the nerve root for the numb location of my ankle was, which was also all around the L-2 vertebra that I broke. She suggested that maybe my bladder nerve signals aren’t always making it where they are supposed to, thanks to this injury and lack of rehab.
I thought the back break connection was interesting, but around the same time, I also came across an online story of a woman who spent 15 years in a similar chronic pelvic pain/UTI cycle. She got connected with UC Health Denver, and one of the urogynecologists there found a urethral cyst. She was able to resolve her symptoms with surgery.
Within a week, I had secured a referral to see a doctor at UC Health in Denver. While this doctor didn’t find any surgical intervention was necessary, she opened up the door to the right diagnosis and treatment.
Proofreading My Medical Record: Erasing Interstitial Cystitis
My doctor at UC Health was highly suspicious of my interstitial cystitis diagnosis. She explained to me that it is so incredibly rare and so overdiagnosed, so she wanted to rule that out first. Another cystoscopy in the books, and my bladder lining was totally healthy. I didn’t have interstitial cystitis.
She ordered an MRI of my abdomen and pelvis to check for anything else that could be at the root of my problems (both of which came back normal). She explained that almost certainly, I have pelvic muscle dysfunction, which can cause very real pain and infections.
She prescribed a post-intercourse prophylactic antibiotic prescription, which I take and know has been critical in preventing re-infection.
She also prescribed me another round of pelvic floor PT, this time without the shadow of an incorrect IC diagnosis. And it was here that I found answers as to why my MRI and cystoscopy are normal, but my urinary system and pelvic floor function aren’t.
Pelvic Floor Physical Therapy For Bladder Nerves
My second round of pelvic floor physical therapy is the piece of this puzzle I am the most grateful for along the whole journey. I went to a new pelvic floor PT with a clean slate. Confirmation of a misdiagnosis opened the door to fresh investigation. She saw the notes about the tests my knee physical therapist had done that suggested nerve funkiness in my back via my numb ankle.
“She explained that nerve tension and compression can still be present but might not show up on any imaging tests. Then she pressed on my back, and my bladder burned. She had me do some nerve gliding exercises, and my bladder burned again. My persistent bladder pain has a root (or several) in my back & nerves.”
After a year of physical therapy, I had made a lot of progress though my chronic pelvic pain and cyclical urinary incontinence/bladder pain was still present. My physical therapist was confused about the amount of work I had put in relative to my ongoing pain patterns.
During one appointment she told me that the amount of improvement in my back and the amount of pain I was continuing to have didn’t make sense if it’s all from nerve compression. She told me that she really thought I might have endometriosis.
It wasn’t the first time I’d heard the possibility, but it was the first time it came from someone who had really spent the time with me to understand my case, so for once, I heeded the suggestion. I recalled seeing Dr. Nicholas Fogelson’s interview with Live UTI Free and thought his clinic is the place for me given the possible nerve involvement and his expertise in pelvic neuropathy. I reached out and was connected with his clinic partner, Dr. Shanti Mohling.
The End: Endometriosis & Adenomyosis
During our initial call, I explained my case to Dr. Mohling. Her compassion reached right through the phone. She listened and gave me thoughtful feedback on her perspective on my case. She confirmed that it sounds to her like endometriosis is a likely possibility. So I scheduled my surgery, booked flights to Portland, and was on my way to turn over this last leaf.
I was terrified about surgery. I was intensely anxious about complications, or worse, getting a surgery where she found nothing and I’d have put my body through this trauma only to arrive at another deadend. But my fears were rapidly quelled.
During the pre-operative exam, her expert, endometriosis-informed, approach to ultrasound identified obvious signs of endometriosis and potential adenomyosis. My uterus was positioned abnormally (and painfully), tilting backward with signs of inflammation. My personal guess is that previously, when my pelvic floor PT had been pressing around and recreating my symptoms, she was aggravating the spaces where my uterus was already pressing & irritating.
During surgery, exactly where Dr. Mohling predicted there would be endometriosis based on ultrasound, there was classic powder-burn, deep-infiltrating endometriosis. She excised it.
She also found that I did, indeed, have adenomyosis – a painful, inflammatory condition of the uterus in which the endometrium invades the actual muscle of the uterus. This can cause it to become enlarged, press on things it shouldn’t, cause heavy bleeding and severe pelvic pain, and the only cure is hysterectomy.
Many studies have confirmed that adenomyosis is associated with general genitourinary tract aggravation, including urinary incontinence, daytime frequency, and urgency. She also hydro-distended my bladder to double-check for interstitial cystitis and confirmed that my bladder was totally healthy.
In addition to endometriosis excision surgery, I also had a Mirena IUD inserted as a conservative, first-line of treatment for adenomyosis. The progestin released by the IUD is expected to shrink my uterus back down and reposition it to a more comfortable spot.
Around day 7 post-operation, I felt amazing – besides some remaining abdominal soreness. By day 13, I realized I hadn’t had the daily burning pelvic pain I was so used to a single time since my operation. My bladder already felt much less painful, without a moment of urgency since the operation, and my energy is better than it had been in many years. This trend of improvement has only continued. This is what the right diagnosis and treatment feels like.
So after this story of twists and turns that I know so many of us can relate to, chasing so many different possibilities that could explain the pain and infections, here’s the takeaway for everyone.
My Main Takeaways
“Working on mental health, leaning on your supportive relationships, and fighting for the right diagnosis and the right team of doctors is the recipe for success.”
You know your body better than anyone. Don’t let any person or doctor convince you to stop listening to its messages. If treatments aren’t working, you probably don’t have the right diagnosis. As an interstitial cystitis patient of six years who didn’t actually have interstitial cystitis, take it from me.
I certainly had a chronic infection that my six rounds of antibiotic bladder instillations cleared. I also had chronic pelvic pain and pelvic floor dysfunction rooted in endometriosis and adenomyosis.
It’s difficult to think about how quickly Dr. Mohing found the real problem and how many years and prior doctors led me down misdiagnosis-rabbit holes or just dismissed my pain as “psychosomatic”. The relief I feel today is amazing, and yet my heart breaks that the truth is, the time-to-diagnosis that I experienced isn’t uncommon in this patient community.
If you asked me a few years ago whether I thought I’d one day feel normal again, I would have told you I have accepted that I have to live with pain forever unless I have another chance period of remission, and yet here I am.
I am able to confidently say that I am a success story. Further, I know everyone else can be a success story, too, because in the words of my urogynecologist, Dr. Janine Oliver: “There is always a treatable cause driving recurrent UTIs and chronic pelvic pain. We just have to find it first.”
I hope everyone here can take that quote to heart and trust that you are not an exception to that rule. Don’t stop until you find your answer. You deserve to be, and you can be, pain-free.