Why Personalized Healing Plans are Everything: Pelvic Floor Treatment with Ehler’s-Danlos Syndrome

 
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In many cases, pelvic floor dysfunction is not the only diagnosis a patient is facing. Understanding this, each patient that walks through our doors is given a customized treatment plan.

Why are Personalized Healing Plans Important?

One-size-fits-all treatment methods is often the reason some of our patients have seen dozens (yes, sometimes over 30 practitioners) before finding us and experiencing true healing. This is unacceptable!

The month of May is dedicated to increasing awareness surrounding Ehler’s-Danlos Syndrome and pelvic pain—one of our patients, Leah, has both. Due to her Ehler’s-Danlos Syndrome, simple activities such as walking and breathing can be difficult for her.

According to the Ehlers-Danlos Society, The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

Symptoms include:

  • Overly flexible joints that can dislocate;
  • Skin that's translucent, elastic, and bruises easily; and
  • Dilation and sometimes even rupture of major blood vessels

At just 19 years old, Leah's battle against Ehler’s-Danlos Syndrome results in routine subluxations throughout her body. In fact, it is not uncommon for Leah to sublux multiple joints including her hips, ribs and shoulders. Leah was sent to us to help with her urinary retention, as her pelvic floor works overtime with hypertonicity desperately trying to stabilize her pelvis, lumbar spine, and hips. 

This unfortunately often makes it hard for her to empty her bladder. 

Leah's Customized Treatment Plan

In order to be effective, our treatment for Leah has to be head-to-toe with manual therapy using myofascial release, craniosacral therapy, visceral mobilization, neuromuscular therapy, and pelvic floor therapy. 

 Leah with Dr. Julie Sarton at her pelvic floor physical therapy session.

Leah with Dr. Julie Sarton at her pelvic floor physical therapy session.

Leah's treatment did not include the mobilization of joints. We often used craniosacral therapy techniques and myofascial techniques as her severe muscle spasm will cause pain, diaphragm restrictions and rib subluxations restricting her breathing. She undergoes significant neuromuscular reeducation and strengthening as well with a neurologic physical therapy. We additionally used visceral mobilization when needed, particularly in Leah’s case for the bladder, to help decrease her urinary retention and pyloric sphincter to help with digestion.

Leah astounds us week after week with her attitude and insights into life. It truly has been an honor to walk her healing journey with her and witness the incredible progress she has made (that she has worked oh so hard for)! Also, she is now leveraging her healing journey as an advocate for those suffering with chronic illness.

Ehlers-Danlos Syndrome and pelvic floor physical therapy
 "I'm a 19-year-old college student and advocate who has spent the last four years fighting the health care system. Like many women with chronic illnesses and disabilities, my reproductive health is an important part of my overall physical health, but was often ignored in my treatment plans. When Shira and I discussed our journeys as chronically ill women and our fight to be heard in the medical community, we knew didn’t want other women to face these struggles alone. I want to help end the stigma against reproductive care and promote body positivity, and help women foster healthy relationships and become self advocates!"

We want to honor Leah and all the other pelvic health heroes out there fighting their own journey for improved health, and for those supporting others as they go about their journeys. We are all in this together and collectively, we can make a difference.

Click to learn more about Ehlers-danlos Syndrome and female pelvic pain (or male pelvic pain).