Chronic Pain Medical Mystery Solved - My Pelvic Floor Dysfunction Journey

My journey with chronic pain has been challenging to say the least. Although, I am grateful that over the years I have found creative ways to work around my unexplained chronic pain, it can still be difficult to deal with. My healthcare experiences have taught me a lot about patience, resilience and working on remaining hopeful. My physical pain started over a decade ago and finding the reason why I have pain on my right-side has been like trying to solve a mystery. This year I finally got a diagnosis, which has put my mind at ease. Although my pain won't go away entirely, I am grateful I know how to best manage it and have excellent healthcare experts to guide me along the way. In this blog article I am going to discuss my health issues, how it affects day to day life and how my diagnosis unfolded.   

My Long History with Physical Pain

My health issues started in my early thirties. I was diagnosed with ovarian cancer at the age of thirty-three. I was very lucky, because I was persistent about seeing a doctor when I didn't feel well and received an early cancer diagnosis - ovarian cancer stage 1. Immediately after my diagnosis, I had two major pelvic surgeries. One of those surgeries was a hysterectomy followed by chemotherapy treatments. From that experience alone I took all of my future health matters very seriously. Over the years I continued staying on top of my healthcare. I am diligent about seeing my routine doctors and when something doesn't feel right I go see a doctor. 

My physical pain first started with my feet back in 2013. My feet started developing incredible amounts of pain. Every step I took lead to some sort of discomfort. Both feet felt sensations of tingling, numbness, soft to sharp pains. My feet had good days and bad days. Slowly new pain progressed to the right side of my body. I started developing pain in my lower back, tailbone, pelvic area, hip, knees and had sciatic symptoms. Simple tasks started becoming difficult. Sitting in a chair became painful and made social settings extremely uncomfortable. When going out to dinner I had to find restaurants with booth seating or bring a special seating pad. Fun events started to become discouraging. Family and friend dinner parties produced anxiety. Too often their dining chairs made my pain worse - hard wood chairs without cushioning. My physical pain even affected my fashion. I could no longer wear heels of any kind. I was forced to wear adjustable tennis shoes, which made me sad. I automatically assumed my unexplained pain was just my aging body and years of being a long distance runner. I decided to go see a doctor to be on the safe side and to seek out some answers.

The first doctor I saw diagnosed me with hyper mobility after doing a simple hip x-ray. He said that it was the root cause of my pain and I was born with it. My gut told me the doctor was wrong. So, I decided to get a second opinion. My husband suggested going to the University of California, San Francisco (UCSF) Medical Center. After meeting with a few UCSF doctors I luckily found the right one for me, an Orthopedic Institute Sports Medicine Doctor. On my first visit, the doctor ordered an MRI. Amazingly, that same day I received the test results and was diagnosed with a torn labrum on my right hip. I was so relieved to finally have a diagnosis. I had surgery the following week to repair the torn labrum.

Although my surgery recovery was tough I was thrilled to get my life back on track. The recovery included rest and no pressure on the repaired torn labrum side for two weeks. It was challenging walking only on one leg. During the recovery period I noticed my knee and sciatic pain was entirely gone. I was relieved and thrilled. Strangely, I still had pain in the other areas of my hip, back, pelvic and feet. I made another appointment to go back and see my doctor. After a tearful post op visit with my doctor we decided on another MRI to make sure nothing else was going on. When my MRI came back normal I was crushed. I just knew this would be a long journey and feared I would be living with pain forever.

During the upcoming months I decided to just live with the pain and take a break from seeing doctors. Eventually I went back into the healthcare system to seek some answers and hoping for treatment. Over the course of ten plus years I saw over 10 doctors, endured numerous imaging tests such as MRI's, CT scans, nerve testing, injections and even tried physical therapy. Nothing was coming up abnormal, except some arthritis which was consistent with my age. I was so frustrated. I felt hopeless at times. I missed simple things in life, such as being able to take long walks, sit comfortably at the table and confidently stand at dinner parties. 

As time passed my pain felt like it was progressively getting worse. My hope of getting better was diminishing, but something inside me said not to give up. On a positive note I discovered a few ways that helped relieve my pain. This included sitting in a lotus, firelog or butterfly pose positions and laying flat. I also discovered sitting in a zero gravity chair took away most of my pain. Constantly being in different positions also helped reduce my pain as well. Still my walking distance capabilities were limited. I desperately wanted to go for a walk without pain, but it was not in my reality. Social activities remained hard on me physically and mentally. I felt like a total freak explaining to people at dinner parties that I had to sit on a soft couch and couldn't stand up and mingle. Standing while doing the dishes became painful unless I stood on a soft mat. All I could do was try to live with the pain or go back into the healthcare system to see if my medical mystery could be solved.

Chronic Pain Medical Mystery Solved

In 2024 I decided to revisit my mysterious pain, yes again. I went back to UCSF to see a back specialist. We decided to try a paraformis injection to rule out a paraformis issue. The test came back negative. My last resort, to give physical therapy (PT) another try. So, I scheduled my PT appointment at a clinic in Walnut Creek near my home. I tried to remain hopeful on my first day of PT. Although I had been down this road before, I thought perhaps this would help with pain management and may provide answers to this mysterious health issue. On my first day of PT I met a very knowledgeable specialist named Jessica. As I began telling her my long story and physical struggles she carefully listened while taking notes. She asked me a multitude of questions. After I finished my long story I had told 100 times to healthcare specialists she said "it sounds like a pelvic floor disorder and that women who have had major pelvic surgeries can develop this. She said it is often overlooked by doctors." Her words gave me encouragement and finally a glimpse hope. 

During that office visit we went over some physical therapy exercises that could possibly help relieve my pain. Just as we were ending the session she delivers some bad news. It was her last day at the PT facility. Another frustration, there were no other PT Pelvic Floor Specialists at the facility. My next assignment was to find a Pelvic Floor specialist that could help me. The next day I called around to physical therapist facilities in my area, but couldn't find a pelvic floor specialist. There seemed to only be specialists at costly Pelvic Floor Dysfunction Centers that were not covered under health insurance. My husband suggested reaching out to my original doctor at UCSF to find a UCSF Pelvic Floor Specialist. Luckily, after speaking with my doctor I found a UCSF pelvic floor specialist.  Apparently, these type of specialist are in great need.

I scheduled my first Pelvic Floor PT Specialist appointment. When I arrived to my first appointment I told the PT specialist my long detailed history with my chronic pain. Over the course of several months the specialist educated me about my type of pelvic floor dysfunction and found ways to reduce my pain. I thought about all of my previous healthcare advice and this time took in learning something entirely new. I learned about the likelihood of why I had developed a pelvic floor problem. I discovered my type of pelvic floor dysfunction - prone to being in constant state of contraction causing nerve and muscle pain on my right side. 

Today, I am learning ways to relax my pelvic floor and reduce the stomach/pelvic  clenching I have been doing subconsciously for decades. My pelvic floor management is a combination of internal pelvic releases, calming exercises, rest and learning ways to relax. My genetic makeup, trauma from multiple pelvic surgeries, surgery induced menopause from cancer and stress have all contributed to my pelvic floor dysfunction. This whole experience taught me that when I get stressed or carry anxiety my body naturally clenches causing pelvic tightness - all contributing factors of my pelvic floor dysfunction.

Today, I am learning healthy ways to manage my stress, which is a work in progress. Although my pelvic floor dysfunction doesn't go away entirely I am able to manage it. I have pain free days which is a miracle. Sitting is still a challenge for me, but I am at peace about it. I am happy to know why my pain exists at times and realize it won't be an everyday occurrence. That gives me tremendous hope and a much more positive outlook about life. I am hoping my candid story can help someone that suffers from chronic pain and deliver a glimpse of hope. Thank you for reading about my journey.