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.
- 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.
- 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.
- The diagnosis is only truly confirmed from surgical extraction and (+) histological findings.
- 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
- These medications do not cure the disease; they work by suppressing menstruation and therefore also the painful endometrial implants.
- 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.
- The majority of women have their symptoms return when they stop taking the medication.
- Oral contraceptives may lead to the development of vulvar pain in certain women, adding a second pain condition into the picture.
- 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)
- 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.
- Certain women experience significant ongoing side effects such as headaches and nausea from the hormones.
- The IUDs are possibly uncomfortable for several months as the body gets use to it.
THE PROBLEMS: Gonadotropin-Releasing Analogs Treatments
- These medications stop the production of estrogen which in turn ‘starves’ the endometrial implants.
- 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.
- Estrogen is necessary for health bone density and these medications therefore have side effects of bone density loss.
- 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.
- 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
- 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.
- 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.
- Physical Therapy
- pain physiology education
- manual therapy
- case management
- restore function
- temporary lifestyle modifications
- Home Exercise Programs: therapeutic and general fitness
- dry needling
- Behavior Health Strategies
- Cognitive Behavioral Therapy
- mindfulness training
- sex therapy
- hypnosis
- pain psychology education
- Integrative Medicine Strategies
- yoga
- acupuncture
- nutrition/diet modifications
- rolfing/massage/bodywork
- Pharmacologic Options
- Simple analgesics
- Neuropathic analgesics
- NMDA antagonists
- Cannabis
- Antidepressants/antianxiety
- Benzodiazepines
- Female Pelvic Pain: Hormonal
- topical estradiol/testosterone
- systemic hormonal therapy
- Interventional Pain Management
- Trigger Point Injections
- Peripheral Nerve Blocks
- Ganglion Impar Blocks
- Caudal Epidural
- Pulsed RF/ Ablation/ Cryoablation
- Botulinum Toxin injections
- Neuromodulation
- Transcranial Magnetic Stimulation
- Ketamine Infusions
- Surgical Intervention
- Skilled extraction of endometrial implants
- 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!
Comments
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.