Endometriosis Awareness Month

Yellow ribbon

March is Endometriosis Awareness Month. Endometriosis is a chronic condition in which the lining of the uterus, the endometrium, grows outside of the uterus. Endometriosis or “endo” as it is sometimes called, affects 10-15% percent of women of reproductive age. The growth of endometrium outside of the uterus can cause a whole host of symptoms, that can vary from patient to patient and is not directly correlated to the amount of rogue endometrial tissue in the body cavity. The symptom classically associated with endometriosis is painful periods, but other symptoms also include constipation and bloating, pain with evacuation of both urine and feces, painful sex, heavy periods, as well as other symptoms. Because these symptoms can be considered “nonspecific”, women can wait anywhere from 3 and 11 years to obtain a diagnosis of endometriosis and finally receive medical, including physical therapy, and/or surgical management.

The cost associated with lost productivity and medical expenses associated with endometriosis is estimated to be in order of 22 billion dollars in the U.S. alone in the year 2002. This figure is higher than the cost of both Crohn’s disease or chronic migraine. To read more about symptoms and treatment options for endometriosis, including physical therapy which can significantly help with the pain and dysfunction related to endometriosis, please refer to our blog.

Endometriosis in the Media:
If you are a fan of Lena Dunham, writer, producer, director, and actress in the HBO hit, Girls, you may have heard a lot of information about her battle with endometriosis. The actress recently announced a hiatus from her work, secondary to a flare in her symptoms. Shortly after her announcement, she was hospitalized with a ruptured cyst on her ovary, related to her endometriosis.

In the wake of these announcements, there has been a lot of focus on this common, but little talked about disease. With the glut of information hitting the media in response to Lena’s announcement, there was unfortunately some misinformation reported by some mainstream media outlets. It was erroneously reported that the only treatment for endometriosis is a hysterectomy. This is categorically untrue and caused a frenzy of healthcare providers to contact the media and squash this myth. According to the National Institute of Health, a hysterectomy does not guarantee a cure from the pain associated from endometriosis. Furthermore, treatments like diet changes, use of oral contraceptives, hormonal treatments, physical therapy for the musculoskeletal involvement and precise excision surgeries all have been shown to offer relief from endo related symptoms. With the misinformation that remains in the media and even in the medical profession, there is a need to promote evidenced based information to healthcare professionals as well as the public at large about this common and debilitating disease.

A new documentary:  Endo What?
Endo What? Is a feature length documentary that brings awareness of the stories of women who are currently suffering with endometriosis and explores the many treatment options available to these women, including medical and physical therapy treatments and surgical options. Endo What? puts human faces on the experience of those who are suffering with Endo and is a phenomenal tool to empower women to make educated choices on how to best manage their symptoms. Their website is here if you wish to find out more about this documentary or attend one of their worldwide premieres.

 Developments in Endometriosis Diagnosis and Treatment
In February of this year, a study entitled, Soluble Tumor Necrosis Factor-alpha Receptors in the Serum of Endometriosis Patients was Published in the Journal of Obstetrics & Gynecology and Reproductive Biology. The authors found that a substance called tumor necrosis factor-alpha (TNFa) was significantly higher in women with endometriosis (previously diagnosed via laparoscopy)  than those who did not have the condition. This finding can be useful in finding medical interventions  for the disease as well improving diagnosis of endometriosis early on in a woman’s development of the disease by testing for elevated TNFa in the blood.

Resources for Endo:
Living with endometriosis can be hard. People often find themselves feeling like they are missing out on a lot of the things their friends can do with ease. It is also difficult because endometriosis doesn’t make you look sick. It can be difficult to explain what endometriosis is like to someone who doesn’t have disease. Support groups can keep you informed about current developments, treatments, and tried and true strategies for living with endo. Endo Warriors is a great New York City area resource for local events and international resource on social media. Visit their website at endowarriorssupport.com. The Pelvic Messenger, an extremely informative radio show with some of the top experts in the world, sponsored by Beyond Basics Physical therapy and the International Pelvic Pain Society, has done many interviews on endometriosis with Dr. Andrew Cook, Dr. Frank Tu, Md, Jill Fuerisch and Nicole Malashi of Endo Warriors and others, and will interview Shannon Cohn, producer of Endo What? At  the end of the month.  The Endometriosis Association and the Endometriosis Foundation of America, at are also excellent resources for endometriosis support.

endo
Beyond Basics wears yellow in support of endometriosis awareness month

 

Sources:

American Congress of Gynecologists and Obstetricians. Million Women March for Endometriosis Fact Sheet.http://www.acog.org/about_acog/news_room/~/media/newsroom/millionwomanmarchendometriosisfactsheet.pdf. [Accessed March 11, 2016]

Bonocher C, Montenrgro M, Rosa e Silva J, et al.  Endometriosis and physical exercises: a systematic review. Reproductive Biology and Endocrinology 2014, 12:4

The Mayo Clinic. Diseases and conditions: endometriosis.http://www.mayoclinic.org/diseases-conditions/endometriosis/basics/symptoms/con-20013968 [Accessed: March 11, 2016]

Mechling L. Explained: here’s what you need to know about endometriosis. Vogue. February 18, 2016

Othman EHornung DHussein M, et al.Soluble tumor necrosis factor-alpha receptors in the serum of endometriosis patients

Eur J Obstet Gynecol Reprod Biol. 2016 Feb 20;200:1-5. doi: 10.1016/j.ejogrb.2016.02.025. [Epub ahead of print]

National Institute of Health. What are the treatments for endometriosis.https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/Pages/treatment.aspx. [Accessed: March 11, 2016]

Nothnick W and Alali Z. Recent advances in the understanding of endometriosis: the role of inflammatory mediators in disease pathogenesis and treatment [version 1; referees: 4 approved]. F1000Research 2016, 5(F1000 Faculty Rev):186

(doi: 10.12688/f1000research.7504.1)

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