Endometriosis: A PT’s Journey to Diagnosis & Treatment

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By Jennifer Keesee, DPT, PHRC Westlake Village

March is endometriosis awareness month, and here at PHRC we want to help spread the word about this complex disease that is often hidden in plain sight. Endometriosis is a condition that affects approximately 10% of women, which also includes trans-men, and those who do not identify as a woman, but were born with a uterus. It has also been shown on rare occasions to affect cis-gender males. As physical therapists working in pelvic health, we are familiar with this diagnosis. In this week’s blog I want to share my story in the hopes to help others get the help they need faster than I did. 

 

Endometriosis was not on my radar until I started working as a pelvic floor physical therapist. I was no stranger to the medical field, I had graduated from an intense three year Doctor of Physical Therapy program and worked as a physical therapist for seven years before specializing in pelvic health. Despite my post-graduate education in healthcare I had a very limited understanding of the signs and symptoms of endometriosis. I was aware of the “classic signs,” of heavy and painful periods, blood clots, pain with sex, and infertility. Like many others, I was unaware  that digestion, bowel and bladder function, mental health, and cognitive function could be affected and symptoms can occur at any point in your cycle, not just during or before your period. 

 

Our training as pelvic floor PTs is quite intimate. When practicing external and internal manual assessment and treatment techniques with your co-workers, you quickly learn each other’s stories and develop close working relationships. I shared some symptoms that I thought were random quirks with my boss, Stephanie Prendergast, during my training program. My symptoms included urinary frequency, burning and chills with bowel movements, constipation, bloating, moderately painful cramps for two days at the start of my period, and pain with deep penetration. She had several follow up questions before asking, “Has anyone talked to you about endometriosis?”

 

“Uh no,”I responded. I thought endo caused severe debilitating pain for days to weeks at a time. Surely my “quirks” were just that and nothing more. Stephanie suggested I reach out to Jandra Mueller, our PT and Integrative Medicine specialist in Encinitas, who developed the first continuing education course for physical therapists about Endometriosis. I still wasn’t convinced that I had endo, and even if I did, were my symptoms severe enough to seek treatment? Within a couple weeks I received concerning results from a fertility work-up: my Anti-Mullerian Hormone (AMH) level was extremely low for my age, indicating low ovarian reserve, and I had a small subendometrial cyst with suspected adenomyosis. 

 

This was when I finally started considering the possibility that I had endo. I kicked it into high gear, I scheduled with a reproductive endocrinologist, started working with Jandra, and did so many google and pub med searches. I learned that endo is found in 80% of women with adenomyosis1 and that endo is a significant risk factor for developing diminished ovarian reserve.2 Not only that, people with endometriosis are at significantly higher risk for developing depression and anxiety,3,4 which I had been dealing with since I was a teenager, for almost two decades. Over the years, I managed these conditions with therapy, medication, and many coping strategies: eating well, staying hydrated, exercising regularly, getting a lot of sleep, meditating, doing yoga, and leaning into my support system Basically, I made my mental health my job outside of work, yet I still felt exhausted. I believed this was the price one paid for living in a human body. 

 

Finding a provider that truly understands endometriosis and can create a proper treatment plan was surprisingly difficult despite my list of symptoms, objective test results, and being a healthcare provider myself. 

 

In six months, I saw a primary care doctor, three OBGYNs, and two fertility specialists. Despite my list of symptoms and test findings, I was told everything from “you don’t have endometriosis, your symptoms don’t line up with its presentation, your pain isn’t bad enough, it only lasts for 2 days” to “even if you do have endo, it’s likely not affecting your fertility, there’s not much you can do,” to “surgery won’t help fertility,” and my favorite “try not to stress, I’ll look forward to seeing you when you’re pregnant.” I had multiple organ systems involved, some of the “classic signs” of endometriosis, as well as some lesser known symptoms. Based on my research, I knew this was not correct and it was time to find someone who specialized in treating this condition. Jandra referred me to Dr. Chandra Spring-Robinson, an OBGYN with extensive experience in robotic, minimally invasive laparoscopic surgery. 

 

During my evaluation with Dr. Spring-Robinson, we discussed all of my signs and symptoms and she performed a pelvic exam. She confirmed my suspicion, stating that endometriosis was very likely contributing to my issues, and explained that laparoscopic surgery is the gold standard in diagnosing and treating endo. She helped me develop a game plan: have a pelvic ultrasound, undergo a couple rounds of IVF to bank embryos, and then plan to do a laparoscopy to remove any endo lesions as well as a hysteroscopy to explore the condition of my uterus. The pelvic ultrasound performed by her staff was more thorough than any of the other dozen pelvic ultrasounds I’d had. The technician had me change positions a couple times and applied pressure to my abdomen in different areas, which I later learned was to see if the pelvic organs compressed appropriately in response. If they didn’t, it was possible that endo lesions were causing tension, which would distort their appearance. 

 

In the meantime, I worked with my PHRC team to manage my symptoms and prepare for surgery. Jandra developed an integrative nutrition plan to optimize hormonal balance, energy, mental health, and decrease bloating and constipation. I let her know that I was open to making changes but restrictive diets are very stressful and do not work for me. Jandra was very supportive and used intuitive eating strategies to help me identify ways I could enjoy foods that made my body feel good and limit things that worsened my symptoms. She also recommended several supplements to optimize my gut health which helped to decrease the bloating and minimize constipation. One of the most helpful suggestions was to sit down and take a couple of deep breaths before eating to get my nervous system out of the fight or flight response and into rest and digest. You can find some of the techniques I used in Part I: Breathing Techniques for Pelvic Floor Health and Part II: Breathing Techniques for Pelvic Floor Health. Within a couple months, I went from having a bowel movement three to four times per week to almost daily and I no longer experience bloating! 

 

I saw Stephanie for a couple pelvic floor PT sessions. She found no issues with my pelvic floor muscles, but was not surprised to find myofascial restrictions in my hips, abdominal muscles, low back, and inner thighs. She performed manual releases of these restrictions and gave me a home exercise program that involved foam rolling and gentle stretches. She also encouraged me to do activities to calm down my nervous system such as breathing exercises and gentle yoga. I learned to listen to my body and found ways to relieve stress and tension at the end of hectic days. 

 

With this dream team, I felt confident, supported, and empowered going into surgery. In the recovery room, Dr. Spring-Robinson explained that she removed a couple endometriosis lesions adhered to the organs in my abdominal cavity in addition to three uterine fibroids. The first couple of days after the procedure, my abdomen was bloated and tender and I was very gassy. However, within a week, I began to feel better than I had in years. My brain fog was gone, my mood was better, I had more energy, pooping didn’t hurt, and my bloating decreased. I was not expecting such dramatic changes, let alone this soon. And then it clicked… I had been treating all of these symptoms independently for more than half of my life. I was so grateful to finally have answers, and wondered what the last decade would have looked like if a provider had sat down with me and put all of the pieces together? Could I have saved time, energy, and money if endometriosis was identified earlier?

 

It is time for the medical system to change how endometriosis is addressed. According to the World Health Organization, endo affects about ten percent of vulva owners of reproductive age.5 That means that our primary care providers, gynecologists, and urologists (among many other specialty disciplines) have the potential to have life-changing impacts by screening for the urinary, digestive, reproductive, mental health, and cognitive impacts caused by endometriosis. 

 

Some might say that this would put unnecessary strain or cost on the current medical system, but I’d argue this could save years of unnecessary and costly interventions, and prevent the negative sequelae of untreated endometriosis by addressing the root cause of a patient’s symptoms. The average time to diagnosis in the US is seven to ten years.6  Definitive diagnosis of endometriosis requires surgery and histological pathology, which is invasive and our current methods of imaging are of little use for the majority of people. However, there are many ways to identify that endo may be involved; but the road to diagnosis is made harder by misinformation perpetuated by the medical community. Here are some of the statements that I learned to push back against:

 

“It’s normal to have pain for two days around your period”

 

While it may be common for menstruating individuals to have pain at some point in their cycles, this does not mean it is normal. Cyclical pain should be evaluated with other signs and symptoms to determine its source. 

 

“Your pain is not bad enough. People with endometriosis have severe pain.”

 

Endometriosis varies widely in its presentation. Many patients with endo do not have pain, but may have other symptoms as discussed in this blog. It is also important to note that pain severity does not indicate severity of disease. This means that patients with severe pain may have very few lesions and patients with minimal pain may have extensive lesions.7

 

While each person’s experience of endometriosis will differ, my hope is that we can decrease the amount of time patients spend seeking diagnosis and treatment by educating medical professionals and empowering patients. If you suspect you may have endometriosis and have not been heard, I invite you to visit Pelvic Pain Explained: Endometriosis + Resource List for more information and schedule an evaluation with one of PHRC’s pelvic floor physical therapists. 

 

 

Resources

Pelvic Pain Explained: Endometriosis + Resource List

 

References

  1. Leyendecker G, Bilgicyildirim A, Inacker M, Stalf T, Huppert P, Mall G, Böttcher B, Wildt L. Adenomyosis and endometriosis. Re-visiting their association and further insights into the mechanisms of auto-traumatisation. An MRI study. Arch Gynecol Obstet. 2015 Apr;291(4):917-32. 
  2. Lin K, Samantha B, Sammel MD, Barnhart KT. Risk factors for diminished ovarian reserve and the role of endometriosis. Fertility and Sterility. 2010 Sep; 94(4) Supplement S63
  3. Sepulcri Rde P, do Amaral VF. Depressive symptoms, anxiety, and quality of life in women with pelvic endometriosis. Eur J Obstet Gynecol Reprod Biol. 2009;142(1):53–56. 
  4. Laganà, A. S., La Rosa, V. L., Rapisarda, A., Valenti, G., Sapia, F., Chiofalo, B., Rossetti, D., Ban Frangež, H., Vrtačnik Bokal, E., & Vitale, S. G. (2017). Anxiety and depression in patients with endometriosis: impact and management challenges. International journal of women’s health, 9, 323–330. 
  5. Zondervan KT, Becker CM, Missmer SA. Endometriosis. N Engl J Med 2020; 382:1244-56.
  6. Endofound.org. (2010 Jul 22). Endometriosis fast facts. https://www.endofound.org/faq
  7. Vercellini, P., Fedele, L., Aimi, G., Pietropaolo, G., Consonni, D., & Crosignani, P. (2006). Association between endometriosis stage, lesion type, patient characteristics and severity of pelvic pain symptoms: a multivariate analysis of over 1000 patients. Human Reproduction,22(1), 266-271.

 

 

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Are you unable to come see us in person in the Bay Area, Southern California or New England?  We offer virtual physical therapy appointments too!

 

Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. For more information and to schedule, please visit our digital healthcare page.

In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page

Melissa Patrick is a certified yoga instructor and meditation teacher and is also available virtually to help, for more information please visit our therapeutic yoga page

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