Period Drama: Endometriosis Diagnosis and Treatment

In Endometriosis by Stephanie Prendergast1 Comment

 

By Stephanie Prendergast, Cofounder, PHRC Los Angeles

 

Severe menstrual pain is not normal. If you experience severe pain during your period it is possible you are suffering from an underdiagnosed disease called Endometriosis.

 

Endometrial tissue lines the uterus. In response to hormonal influences, the endometrium of a healthy uterus thickens and then sheds through the cervix, through the vagina and out of your body. This is your normal period and it should not hurt!

 

When endometrial tissue implants outside of the uterus, it also thickens and needs to shed, but there is no outlet. These implants can adhere to other organs such as the bowel and bladder; they can cause cyclical urinary and bowel dysfunction, severe pain, pain with intercourse, bloating, and nausea.  One in ten women have endometriosis; it is the leading cause of pain in women, and it is responsible for more than half of all female infertility.

 

What makes matters worse is that it takes women an average of 11.4 years in the United States to get diagnosed. This is not acceptable. March is Endometriosis Awareness Month and we here at PHRC want to help raise awareness about this disease and the role physical therapy can play in treatment.  Many people do not realize that pelvic floor dysfunction and other musculoskeletal impairments are common in women with endometriosis and can be causing some of their symptoms. Pelvic floor physical therapy can help.

 

While diagnosing and treating endometriosis has been a challenge, the treatment landscape is improving for women. In this post we will examine some of the current management controversies and discuss the range of available treatment options.

 

PROBLEM: Endometriosis is hard to diagnose.

 

  1. Currently endometriosis cannot be detected through diagnostic tests such as ultrasound, MRIs, blood work, or physical examination. However, MRI technology is improving and with further studies specific MRI scans may be useful diagnostic tools.
  2. The symptoms of endometriosis mimic other syndromes and women with endometriosis often also have comorbid conditions, such as Irritable Bowel Syndrome, Interstitial Cystitis, Vulvodynia, and pelvic floor disorders, leading to further diagnostic confusion.
  3. The diagnosis is only truly confirmed from surgical extraction and (+) histological findings.
  4. Not enough physicians are adequately trained to surgically diagnosis and treat endometriosis.

 

Generally speaking, people prefer conservative therapies over surgical options. People rarely rush to the operating room to get relief from back pain, knee issues, etc., and they do not want to rush to the operating room for endometriosis treatment either. As a result, women are often treated with medications empirically without diagnostic confirmation. These treatments can be effective for some people but they can also have significant physiological consequences.
THE PROBLEMS: Oral Contraceptive Pills and Progesterone Treatments

 

  1. These medications do not cure the disease; they work by suppressing menstruation and therefore also the painful endometrial implants.
  2. This may act as a temporary ‘band-aid’ in some cases but can also be less effective in others based on the severity of the disease.
  3. The majority of women have their symptoms return when they stop taking the medication.
  4. Oral contraceptives may lead to the development of vulvar pain in certain women, adding a second pain condition into the picture.
  5. Oral contraceptives have a negative effect on libido and can be associated with mood disorders, both of which have a significant impact on a woman’s quality of life.

 

THE PROBLEMS: Intrauterine Devices (IUDs)

 

  1. The insertion of a small device into the uterus can also help the symptoms by suppressing menstruation. However, the insertion process and adjustment to the IUD can be more painful in women who have not yet had children.
  2. Certain women experience significant ongoing side effects such as headaches and nausea from the hormones.
  3. The IUDs are possibly uncomfortable for several months as the body gets use to it.

 

THE PROBLEMS: Gonadotropin-Releasing Analogs Treatments

 

  1. These medications stop the production of estrogen which in turn ‘starves’ the endometrial implants.
  2. This also ‘starves’ other tissues of the estrogen they need, such as the vulva and peri-urethral tissues, which can lead to vulvar pain and urinary urgency and frequency.
  3. Estrogen is necessary for health bone density and these medications therefore have side effects of bone density loss.
  4. Endometriosis symptoms can begin when a woman first gets her period. The average age of menarche in the United States is 13. These medications create ‘chemical menopause’ in the bodies of teenagers and the end result can be teenage women with osteoporosis.
  5. The symptoms return when the medication is stopped in most woman and may not be completely controlled while on this medication.

 

THE PROBLEM: Hysterectomy or Pregnancy

 

  1. The glaring problem with the hysterectomy suggestion is many of the women who need help are in their childbearing years and have not yet had children.
  2. Due to a lack of comprehensive interdisciplinary care, young women are often told a having a baby may be their solution if they do not want a hysterectomy. This information is understandably shocking to teenage women with endometriosis and their families.

 

THE SOLUTIONS: Differential Diagnosis and Interdisciplinary Treatment Options

 

In the last decade there has been an exponential increase in the amount of evidence-based information on pelvic pain, including endometriosis. We know that endometriosis itself can be a source of pain. We also know endometriosis is associated with other treatable pelvic pain syndromes and impairments, such as Interstitial Cystitis, Vulvodynia, and Pelvic Floor Dysfunction. The key to successful treatment is to identify which impairments are causing the most bothersome symptoms and start to treat them with the appropriate therapies. This needs to be individualized per patient, each woman with endometriosis will present with different sources of pain despite having the same disease.

 

Last year I was able to participate in an educational program for women called Tendo, aka known as Ten Days Of Endometriosis, organized by Heba Shaheed of The Pelvic Expert. Heba organized 20 experts from around the world to participate in a series of video lectures on Endometriosis management. There is no charge for this program, you can access all of the lectures here.
During my lecture, I discuss the following therapeutic options. We recognize that many of these treatment may be new options for suffering women, giving them the opportunity to explore conservative therapies that may dramatically improve their quality of life.

 

  1. Physical Therapy
    1. pain physiology education
    2. manual therapy
    3. case management
    4. restore function
    5. temporary lifestyle modifications
    6. Home Exercise Programs: therapeutic and general fitness
    7. dry needling
  2. Behavior Health Strategies
    1. Cognitive Behavioral Therapy
    2. mindfulness training
    3. sex therapy
    4. hypnosis
    5. pain psychology education
  3. Integrative Medicine Strategies
    1. yoga
    2. acupuncture
    3. nutrition/diet modifications
    4. rolfing/massage/bodywork
  4. Pharmacologic Options
    1. Simple analgesics
    2. Neuropathic analgesics
    3. NMDA antagonists
    4. Cannabis
    5. Antidepressants/antianxiety
    6. Benzodiazepines
  5. Female Pelvic Pain: Hormonal
    1. topical estradiol/testosterone
    2. systemic hormonal therapy
  6. Interventional Pain Management
    1. Trigger Point Injections
    2. Peripheral Nerve Blocks
    3. Ganglion Impar Blocks
    4. Caudal Epidural
    5. Pulsed RF/ Ablation/ Cryoablation
    6. Botulinum Toxin injections
    7. Neuromodulation
    8. Transcranial Magnetic Stimulation
    9. Ketamine Infusions
  7. Surgical Intervention
    1. Skilled extraction of endometrial implants
  8. Home program/self care

 

It is important to understand that most women with pelvic pain may not tolerate or may not respond to certain therapies or treatments and often more than once. Hopefully knowing this will make women feel less ‘broken’ as they work through the process of finding the treatment that is right for them. Women can and do get better with persistence and a solid medical team!

 

And last but certainly not least, a documentary titled Endo What? was released around the world. If you are suffering from Endometriosis or know someone who is this movie is a must-see. You can view the movie trailer here.
We hope you find this blog and these resources helpful!

FAQ

What are pelvic floor muscles?

The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.

What is pelvic floor physical therapy?

Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.

What happens at pelvic floor therapy?

During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.

What is pudendal neuralgia and how is it treated?

Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.

Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.

What is interstitial cystitis and how is it treated?

Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.

Who is the Pelvic Health and Rehabilitation Team?

The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.

How many years of experience do we have?

Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.

Why PHRC versus anyone else?

PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.

Do we treat men for pelvic floor therapy?

The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.

Do I need pelvic floor therapy forever?

The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.

Comments

  1. Dear Stephanie,
    After many years of unsuccessful surgeries, I was triaged to have endometrial cancer. That was ruled out and I was referred to a dedicated endometriosis expert, also a reproductive endocrinologist whose research concentrated on progesterone suppression of endometriosis, I had surgery on 21 December 2016. She found through exploratory laparotomy, endometriosis on my uterosacral ligaments and iliac artery. I am now on progesterone suppression with estradiol & testosterone replacement. Finally, I am getting better with pelvic PT and myofacial release/massage to prevent adhesions.

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