Not Interstitial Cystitis, PNE, Pelvic Floor Dysfunction, or Vulvodynia, but an Orthopedic Hip Injury?

Disclaimer:

I am not a doctor, and I am not providing any medical advice. If you are in pain or injured please

seek the advice of a medical professional. In this article, I am simply sharing my story.

My Story: How I Solved My 4-Year-Mystery of 
Chronic Burning Pelvic Pain

Hello, I’m Meg, I’m 27 years old, and I have suffered from debilitating chronic pain for over 4 years. I was only 23 years old when this horror story started. I’ve lost a large part of my 20’s due to agonizing pelvic pain and disability. I’m writing this blog post because millions of men and women are diagnosed with some form of pelvic pain each year. A majority of these sufferers are handed pain pills to mask symptoms. The focus is typically pain management rather than pain elimination. 

Having bladder pain, burning in your male or female “parts,” or any type of pelvic discomfort is not only excruciating and embarrassing, but also, scary as hell. If you experience pain in those areas, it can halt your ability to exercise, work, be intimate with your partner, and even laughing can be unbearable.

At my worst, my suffering was so great that I was suicidal. I am writing this article as someone who dug deep to find the root cause of my suffering. It took me four years of research, patience, and self-advocacy, but I did it. If this article helps even one person unravel the mystery of their pain, then sharing my story will have been worth it.

Summer of 2012: Mysterious Symptoms Surfaced:

This is embarrassing to write, but I feel the need to be fully candid. Following a severe car accident in May of 2012, my body was a mess. I was dealing with some pretty serious back and neck pain. Little did I know, my worst pain was yet to come. Weeks later, I began experiencing twinges of burning pain in my “lady parts” as well as a near-constant urge to urinate. 2012 was my year, let me tell you!

When I visited my gynecologist at the onset of this severe burning pelvic and bladder pain, I learned I didn’t have a UTI, yeast infection, or any STD’s. I remember feeling a confusing mixture of relief and terror. I was happy to learn I didn’t have horrible disease. However, I wondered, “What is wrong with me?!” I was perplexed, but worse, my gynecologist admitted that she was also dumbfounded. She said, “Everything looks normal.” She threw some hormonal creams at me, encouraged, “Good luck! Come back for your annual in 3 months,” and sent me home. This commenced a nightmarish pattern of many visits to oblivious doctors. I learned that a majority of doctors I saw were unaware about what causes pelvic pain and dysfunction (in the absence of an infection). Even most gynecological specialists seemed to have little training on the subject. Meanwhile, millions of people are suffering and some are bedridden with this type of pain.

Going from Doctor to Doctor:

Over the past four years, I was determined to find answers and regain my health. Many doctors told me to join a pain clinic, prescribed opiates, and preached, “just find a way to learn to live with the pain because this is how it’s going to be.” With heated tears of rage pouring down my face, I thought, “Find a way to live a sexless, jobless, couch-ridden life...as an active, outgoing and ambitious person by nature? You try experiencing that life, Doctor. Then, tell me again how I should find a way to live with it! Also, if you don’t even know what’s wrong with me, then how can you presume that I’m doomed for life?! There is just no way.”

Prior to my pain, I was an NCAA Division 1 scholarship swimmer. I broke half a dozen collegiate records and qualified for the Olympic Trials. I was healthy and driven. As a young journalist working for a local television news station, I was trained to do research and find answers. I refused to accept a numb, drugged-up life surrounded by pain. In my gut, I knew there was a scientific explanation for my suffering. My pain wasn’t psychological. My body wasn’t housing some mysterious syndrome that possessed a life of it’s own. There had to be an anatomical reason for my pain.

From the start, I knew it would be easier for me to give in. I could accept what doctors offered—a path of pharmaceutical dependability. “I might lose my spark, my personality, but at least I could forge through my days with moderate rather than severe pain levels, right?”

I knew that it wasn’t in my character to choose the easy path before my chronic pain started. Similarly, I was not ready to accept other peoples’ lackluster efforts and reasoning especially when it came to my health. And, the fight began!

The Endless Search…

My mom and I in San Francisco to see a pelvic
pain specialist. We left without any luck, but we
continued our search until we found an answer!

Since the summer of 2012, my mom and I have logged hours of daily research, consulted over 60 medical professionals, flew internationally, and spent over $100,000 out-of- pocket. I was misdiagnosed or left undiagnosed over and over again. I saw medical doctors of numerous specialties including: general practitioners, gynecologists, urologists, neurologists,
orthopedists, oncologists, a psychologist, and an osteopathic physiatrist. I even underwent some invasive procedures and surgeries. I was also referred to a bunch of pelvic floor physical therapists.

During a pelvic PT visit, therapists go internally. They stretch and pull your vaginal muscles in case they are shortened, too tight, too weak, or in spasm. The object is to relax and free up tight muscles in case they are impinging nerves and causing pain. Those visits were joyous and free of humiliation. I looked forward to each and every one. Yeah, right. However, I do have to admit that pelvic floor physical therapy was a decent pain management tool throughout my suffering.

I also tried handfuls of alternative therapies such as: chiropractors, naturopathic physicians, massage therapists, acupuncturists, strict diets, and even some weird, new-age energy medicine crap! I also spent $600 to send my urine to a lab in Virginia to be tested for “rare” bacteria that could have been causing an undiagnosed infection. Everything came back negative. I spent months on antibiotics and herbals on the off chance I had a mysterious case of chronic lyme disease. None of my symptoms changed. I was desperate and willing to test anything that could reduce or eliminate my pain. Some therapies helped mildly. Others worsened my pain. Nothing eliminated it for good.

My Worst Experiences with Doctors:

Finding a doctor who could actually help me was like searching for a needle in a haystack. By the end of 2012, I had seen four gynecologists who ran every test possible, and had no idea what was wrong with me. One morning, I woke up from a dream where in it, acid was being poured all over my pelvis. Everything burned. My pain levels were so bad I began screaming and crying. My mom rushed me to the emergency room. After having a trans-vaginal ultrasound and blood work, everything came back normal and negative. Doctors asked, “Hun, are things stressful at work? Are you being or have you ever been sexually abused?” I felt so demeaned. When my mom asked the ER doctor what our next course of action was, she said, “Do your own research. Pelvic pain affects a lot of women.” In other words, I was on my own.

Over time, I visited a couple gynecologists and urologists who diagnosed me with interstitial cystitis and vulvodynia. In short, this meant chronic pain in your “lady parts” for no known reason, and irritation in your bladder for no known reason. “Gee, if that’s a diagnosis, then hand me my medical degree right now!” I thought. Any laymen could have deduced that.
It’s like going to the doctor for a headache, and having them tell you, “Hmm, I’m thinking you have a pain in your head.” “But why, Doc? How do I treat it?” “I don’t know. Let’s try medications with horrible side effects that hardly help at all. How about Elmiron. That’ll make your hair fall out. Let’s also put you on antidepressants. Good luck!”

I found some forums online where women explained how they cured their vulvodynia and interstitial cystitis symptoms by seeing a chiropractor. One woman’s pelvis was twisted which put pressure on her pudendal and sciatic nerves. Pudendal nerve irritation can cause all types of pelvic and bladder pain. After a couple months, once her pelvis was adjusted and properly aligned, her nerves were no longer irritated. Her pain went away.

To me, visiting a chiropractor sounded easy enough. It was worth a shot. Unfortunately, I wasn’t referred to a good chiropractor like the lady from the forum. I unknowingly went to a “woo-woo,” new-age one. He put a cloth on my lap, said it was “blessed,” and told me to “expect a miracle.” I thought that he was strange, but most likely harmless. He adjusted my hips and my spine. I felt little to no relief, but hoped in time, once my body was more “aligned” symptoms would subside. Then, after a series of visits, this man tried a strange pseudoscientific process called muscle testing on me. There are no double-blind studies that prove muscle testing works. In fact, any studies I could find say that it works no better than a guessing game.

What is muscle testing? In short, the doctor pressed on my arm and asked the “intuitive energy within your body” to tell him what is wrong with me. Every week, he would diagnose me with something different from kidney disease to adrenal fatigue. He even told me that I had pain because I wasn’t in touch with my, “feminine side.” Are you kidding me?! Eventually, I realized he was a con-artist who preyed on the elderly, sick, and desperate. I moved on to a few more science-based chiropractors. Many were kind, considerate, and good at their job. However, I found no relief, and assumed that my problem was not structural in nature.

Doing my research, I found an article by a urologist and supposed pelvic pain expert in Colorado. She claimed to have cured dozens of women with interstitial cystitis. In 2014, I signed up for a phone consultation with her. She convinced me that I was the perfect candidate for her treatment. She said that if I flew out to Colorado for eight weeks, she would offer a highly effective protocol to “reverse this condition once and for all.” After 2 months, many painful and embarrassing bladder installations via catheter, spinal injections of ozone, acupuncture, and pelvic floor physical therapy, my pain didn’t improve. I had spent my entire financial savings, had no answers, and I reached an all-time low
of hopelessness.

Almost the answer, but not quite...

In December of 2015, X-rays of my pelvis indicated that I had a severely dislocated tailbone. My mind flashed back to my terrible car accident in 2012. I wondered if the accident caused my tailbone problem. Since your tailbone is anatomically close to your pudendal nerve, a tailbone injury can potentially cause nerve irritation. Your pudendal nerve is a like a spiderweb of branches that passes through the entire pelvis. It helps control reproductive and sexual functions in the body. Due to my injury and symptoms, I hoped that fixing my tailbone injury would eliminate my pain. After I spent months locating an expert in the US, I couldn’t find anyone with experience and positive testimonials. Two local doctors tried to manually adjust my tailbone through forceful movements. Talk about painful! It didn’t help.

I researched more tailbone experts, and found a doctor in London. His testimonials for treating bladder and pelvic pain associated with a dislocated tailbone were unbelievable. He has helped people get their lives back. Completely in debt and with no money left, I started a Go-Fund- Me account and raised enough to pay for most of my treatment and trip.

Pic from my trip to England to have my tailbone fixed.
My wonderful, selfless fiance took care of me, and stood
by my side during the toughest times in my life. <3

Having my tailbone properly adjusted was the first treatment that helped to noticeably improve my bladder symptoms. It was a godsend. However, my doctor unknowingly thought I was fully healed and told me my nerve pain would resolve within a few months. He encouraged me to exercise. However, the more I exercised, the worst my burning pelvic pain symptoms became.
He encouraged me to find a good pelvic floor physical therapist in the United States when I returned home.

Once I returned home I stopped all exercise, and began seeing an excellent pelvic floor physical therapist. She was so much better and more skilled than any of the previous pelvic PT’s I had tried. She was able to help relax my muscles, and reduced some spasms. My pain levels continued to vary, but she helped a lot. However, whenever I tried doing my home stretch routine provided by my therapist, my symptoms got much worse. I could be at a level 2 out of 10 pain on a good day, do a simple stretch, and then an hour later be in a complete 9 out of 10 on a pain-scale flare-up. My physical therapist thought that it was peculiar that simple stretches worsened my pain so greatly. She wondered if another injury was the driver of my pain. She said that it was a good thing that my tailbone was adjusted properly. However, she thought it was a symptom of a bigger problem, and not the main cause. A bigger underlying issue could have been causing my muscles to spasm, and in turn, my spasming pelvic muscles could have pulled my tailbone out of position.

Discovering My Cause and Cure:

After doing some research, I learned that hip labral tears can, "cause or mimic pelvic floor dysfunction, vulvodynia, and/or bladder pain." A hip labrum is, “A fibrous rim of cartilage around the hip socket that is important in normal function of the hip. It helps keep the head of the femur (thigh bone) inside the acetabulum (hip socket). It provides stability to the joint.”
When a hip labrum is torn, it can greatly alter the stability of your pelvis. It can negatively affect your posture and your gait. In order to prevent more damage to your hip and pelvis, your body has a natural mechanism to protect itself—muscle tightening. The pelvic floor muscles and abdominal muscles tighten and “guard” to help keep the injured hip in place.

This made so much sense to me. My hip labrum easily could have torn due to the massive impact of my car accident in 2012. If that was the case, my pelvic floor muscles weren’t tightening due to “stress” as some experts suggested. They were tightening as a natural response to protect my injured hips. The downside of that tightening is that when muscles become too rigid they can cut off blood flow or tear. This creates a pain cycle of terrible nerve irritation.

On top of the tight muscles impinging nerves, there are also sensitive pudendal nerve endings near the labrum itself. When a labrum tears, it can irritate those nerve endings as well. When irritated, those nerve endings refer intense burning pain to various areas of your pelvis including: Bladder, female/male reproductive organs, vagina, labia, clitoris, penis or testicles.

The Diagnosis: Bilateral Hip Labral Tears, FAI (femoroacetabularimpingement), & Core Muscle Tears (Sports Hernia):

 Surgery Day: September 2016 @ Vincera Institute in Philly, PA

After asking my pelvic floor physical therapist if she thought I might have a hip labral tear, she performed a couple tests to measure my range of motion. She determined that I most likely was correct. She thought I had labral tears in one or both of my hips. She referred me to a local orthopedic doctor who failed to diagnose me properly. Apparently, it is sometimes difficult for local radiologists and doctors to discover a labral tears via a plain MRI. Either the MRI isn’t powerful enough to pick up the tear, or the radiologist isn’t skilled enough. I begged my doctor to order a second MRI with contrast. The tear showed up on the MRA (MRI with contrast die). Hallelujah!

After the first orthopedic doctor failed to properly diagnose me, I didn't trust his judgement. I decided to get a second opinion at the Vincera Institute, a renowned clinic in Philadelphia. This clinic specializes in all injuries of the pelvis, and they treat tons of famous athletes with pelvic, hip
and groin injuries. They also specialize in difficult chronic pain cases like mine. At the clinic, they reaffirmed my knowledge that mechanical injuries such as labral tears can cause excruciating pelvic nerve pain and bladder pain.

Here is a Simplified Video Explanation of My Injuries + Some Footage of the Post-Operative Progress I have Made:

I finally received my proper diagnosis on September 7th, 2016 at Vincera. I was diagnosed with a labral tear in my left hip and bilateral FAI (femoroacetabular impingement), or excess bone in my hip joints. They also found via a full pelvic MRI (an exam that no previous doctors would order for me when I begged) that I had core muscle tears in many different areas of my abdominal muscles. Parts of my rectus abdominus muscle were literally torn completely off the bone offering no support for my pelvic organs. Hence, extreme, unbearable burning pelvic pain!
I had surgery at Vincera in late September of 2016. I received a combined surgery executed by two world-renowned doctors. A hip surgeon repaired my torn labrum, and shaved my hip bones to get rid of the excess bone impingement. He also, elongated my psoas muscle so that it would no longer irritate my nerves. My core muscle surgeon repaired multiple tears in my abdominal and pelvic floor muscles. I can barely read my core muscle surgery operative note because of the gruesome nature of my injuries. It boggles my mind that I was waking around with horribly ripped and torn muscles for years. Nobody can question my pain tolerance after this. The good news is that I am on the road to recovery!

Using CPM machine in this pic to help the range of motion in my hip post-op. Glad
to have the support of my sister!

The Healing Process:

After being in pain for so long, I wish that my pain would disappear instantly after surgery. However, this is not the case. It can take as long as 6 months to a year for frayed nerves and atrophied muscles to fully heal. It sucks being patient, but I am at peace knowing that my injuries have been repaired.

After not being able to work full-time, exercise, or enjoy the day-to-day nuances of life for four whole years, I am excited to move on to better times. I have faith that I will make a full recovery.

If you or someone you know is suffering with similar pain, I will keep you in my thoughts! I firmly believe there is a cause and a solution. You can do this! -Meg