A Look Back on 2020- Endometriosis Research

2020 has been…different (to say the least!). Despite the pandemic, multiple research articles on endometriosis have emerged that validate the patient experience and offer glimpses into endometriosis that may help better patient care in the future.  Most research studies conclude that more research is needed. Here’s a look at just a few research articles that were published in 2020:

1. Impact from Covid-19 pandemic:

The pandemic has affected healthcare on every level and continues to today. The impact of the pandemic on endometriosis care was studied May through June of 2020 by Demetriou et al. (2020) and in their commentary, they report that “the impact on planned care was much greater: 50.0% of responders reported cancelled/postponed appointments with gynaecologists and 14.7% described cancelled/postponed primary care appointments; 37.2% had procedures cancelled/postponed (surgery: 27.0%; fertility: 12.0%). These proportions were similar around the world.”

The authors also addressed the question that many have on whether endometriosis makes them more vulnerable to Covid-19. The short answer is no. The authors state that the question might arise “because the known link to altered immunological responses has been misinterpreted as endometriosis being an autoimmune condition, with additional concerns for those with thoracic endometriosis”. Likewise, Leonardi et al. (2020) states that “there is no evidence that those with endometriosis are at increased risk of becoming infected with SARS-CoV-2 or developing COVID-19 disease…. At this time, we do not believe that the COVID-19 pandemic warrants a sustained change in the overall medical approach to the management of endometriosis (e.g., avoid surgery and favor medical management).”

Leonardi et al. (2020) has a hope that good can come from the pandemic on healthcare. They conclude that out of the pandemic, they hope that “there may be an ongoing openness to telehealth” that could “dramatically minimize the geographic barriers to care that many women experience, and facilitate the development of endometriosis networks of expertise”, that “there may be increased awareness to self-management strategies that have always existed, yet were under-utilized (e.g., mindfulness, physical exercise, and diet)”, and that a “discerning approach to surgery now and in the future, so that we ‘operate sparingly and operate well.’” (Leonardi et al., 2020)

2. Quality of Life:

In an aptly named article “The Burden of Endometriosis on Women’s Lifespan” by Della Corte et al. (2020), the authors demonstrate how endometriosis affects every aspect of a person’s life. This does not surprise those of us with endometriosis, but it does validate what we experience. Della Corte et al. (2020) assert that “endometriosis has not only physical but also psychological effects, causing depression, anxiety, and compromising social relationships. Furthermore, endometriosis negatively impacts sexual life and social relationships. At last, the economic burden of endometriosis should not be underestimated, both individually and for the community, as this pathology leads to a loss of productivity at work and large use of health resources. Thus, endometriosis-related symptoms control women’s lives compromising the quality of life in all aspects.”

• Social Impact: Those with endometriosis demonstrated “a negative impact on relationships, in particular for the lack of understanding and support from others [36]. In addition, previous studies have shown that women feel ashamed of their condition and as a result feel unable to discuss their health with their employer, colleagues, friends, and family [74]. This can lead to the fact that the women felt isolated and alone with endometriosis, as shown in a narrative review on the social and psychological impact of living with endometriosis [34]. It was also highlighted that sometimes the consideration of the effect of the disease on the quality of life is not taken into consideration even by clinicians with consequent compromise in the patient’s medical relationship. In a qualitative study, it has been reported that women highlighted negative experiences with health care clinicians, not receiving support from them….The major and most frequent negative effect of endometriosis is on intimate relationships. Dyspareunia harms sex and intimacy for couples….However, a cross-sectional qualitative study, the ENDOPART study, demonstrated that also general fatigue, a reduction in sex drive due to drugs, a weak mood, bleeding during and/or after sex, and problems in attempts pregnancy have an impact on the relationship.”
• Depression and Anxiety: “The study showed that women with endometriosis had an increased risk of developing major depression…and any depressive disorder… and anxiety disorders…compared to those without endometriosis [80]. Overall, most of the literature agrees to consider depression, anxiety, and emotional distress more frequently in women with endometriosis than in a healthy population [34]. There is still no agreement on the origin of this evident correlation. Some authors showed that depression and anxiety may be the result of the experience of pelvic pain itself rather than of endometriosis since the rate of these psychological disorders was not different between women with endometriosis-related pelvic pain and those with pelvic pain of another nature [81,82].”
• Economic impact: “The annual economic burden of endometriosis, including direct health care costs and indirect productivity loss, was estimated to be $22 billion in 2002 and $69.4 billion in a 2009 follow-up study, a substantial apparent increase in costs attributed to endometriosis over time [91]….in the five years before an endometriosis diagnosis, costs were $7028 higher among patients with endometriosis compared with matched controls without endometriosis [92]. …The same authors of the above-mentioned review have also shown that, in employed women with endometriosis, as a consequence of productivity loss of 6.3 h per week, the total loss per person is approximately $10,177.54 per year [49].”

3. Treatment:

• When looking at surgery, skill and expertise is important for outcomes. While surgery “has been shown to significantly improve endometriosis-associated symptoms”, its success “is directly correlated with factors such as surgical experience, the complexity of each case and anatomical locations of the disease” (Working group of ESGE et al., 2020). The Working Group of ESGE et al. (2020) published their recommendations for deep infiltrating endometriosis (DIE) of “how different types of surgery should be performed, taking potential risks into consideration, and stresses that careful planning and involving different surgeons specialising in bowel or bladder is essential to ensure the best outcomes”. You can read more about that here.
• Some studies have looked into ways to enhance the visibility during surgery as “the identification of endometriotic tissue during laparoscopy is not always clear which may partly contribute to the high rates of recurrence reported after surgical treatment (40–50% at 5 years) [3]” (Lier et al., 2020). Lier et al. (2020) note that “enhanced laparoscopic imaging with 3D white light, combined with NBI, improves the detection rate of peritoneal endometriosis when compared to conventional 2D white-light imaging. The use of these imaging techniques may potentially result in a more complete laparoscopic resection of endometriosis”.

4. Diagnosis:

• Endometriosis has a long delay in diagnosis, which can leave those with it suffering for a long time and without adequate treatment. A definitive diagnosis is achieved through surgery, preferably with pathology confirming it. Research into an easier way to achieve diagnosis, such as through a blood test, is being studied; unfortunately, no biomarkers or blood tests have proven reliability to use for diagnosis yet. Anastasiu et al. (2020) did a review of the research to date and report that “the majority of studies focused on a panel of biomarkers, rather than a single biomarker and were unable to identify a single biomolecule or a panel of biomarkers with sufficient specificity and sensitivity in endometriosis.” They conclude that at this time “noninvasive biomarkers, proteomics, genomics, and miRNA microarray may aid the diagnosis, but further research on larger datasets along with a better understanding of the pathophysiologic mechanisms are needed” (Anastasiu et al., 2020). The end goal of a way to diagnose earlier is so “that no women with endometriosis or other significant pelvic pathology are missed who might benefit from surgery for endometriosis-associated pain and/or infertility [17–19]” (Fassbender et al., 2015).

Let us hope for a bright future for endometriosis care in 2021. Happy new year to you all!

References

Anastasiu, C. V., Moga, M. A., Elena Neculau, A., Bălan, A., Scârneciu, I., Dragomir, R. M., … & Chicea, L. M. (2020). Biomarkers for the Noninvasive Diagnosis of Endometriosis: State of the Art and Future Perspectives. International Journal of Molecular Sciences, 21(5), 1750.  Retrieved from https://www.mdpi.com/1422-0067/21/5/1750

Carlyle, D., Khader, T., Lam, D., Vadivelu, N., Shiwlochan, D., & Yonghee, C. (2020). Endometriosis Pain Management: a Review. Current Pain and Headache Reports, 24(9), 1-9.  Retrieved from https://link.springer.com/article/10.1007/s11916-020-00884-6

Della Corte, L., Di Filippo, C., Gabrielli, O., Reppuccia, S., La Rosa, V. L., Ragusa, R., … & Giampaolino, P. (2020). The burden of endometriosis on women’s lifespan: a narrative overview on quality of life and psychosocial wellbeing. International Journal of Environmental Research and Public Health, 17(13), 4683. Retrieved from https://www.mdpi.com/1660-4601/17/13/4683/htm

Demetriou, L., Cox, E., Lunde, C., Becker, C., Invitti, A., Martínez-Burgo, B., … & Zondervan, K. (2020). A commentary on the need for support with mental as well as physical health for people with endometriosis during the COVID-19 pandemic and beyond. Authorea Preprints.  Retrieved from https://d197for5662m48.cloudfront.net/documents/publicationstatus/54168/preprint_pdf/921ccb14a9dcae7291958ce34ba67304.pdf

Fassbender, A., Burney, R. O., F O, D., D’Hooghe, T., & Giudice, L. (2015). Update on biomarkers for the detection of endometriosis. BioMed research international, 2015. Retrieved from https://www.hindawi.com/journals/bmri/2015/130854/

Leonardi, M., Horne, A. W., Armour, M., Missmer, S. A., Roman, H., Rombauts, L., … & Johnson, N. P. (2020). Endometriosis and the Coronavirus (COVID-19) Pandemic: Clinical Advice and Future Considerations. Frontiers in Reproductive Health, 2, 5.  Retrieved from https://www.frontiersin.org/articles/10.3389/frph.2020.00005/full?fbclid=IwAR2FwiMuHuKb4UW6PVVBz2WuktOK7InbdzMD8DAQ0Df3JD-dPmgEYiOPs3E

Lier, M. C., Vlek, S. L., Ankersmit, M., van de Ven, P. M., Dekker, J. J., Bleeker, M. C., … & Tuynman, J. B. (2020). Comparison of enhanced laparoscopic imaging techniques in endometriosis surgery: a diagnostic accuracy study. Surgical Endoscopy, 34(1), 96-104.  Retrieved from https://link.springer.com/article/10.1007/s00464-019-06736-8

Working group of ESGE, ESHRE, and WES, Keckstein, J., Becker, C. M., Canis, M., Feki, A., Grimbizis, G. F., … & Tanos, V. (2020). Recommendations for the surgical treatment of endometriosis. Part 2: deep endometriosis. Human Reproduction Open, 2020(1), hoaa002. Retrieved from https://academic.oup.com/hropen/article/2020/1/hoaa002/5733057?login=true

4 years ago Endometriosis , Endometriosis Education

The Importance of Rest

We wish you hope this holiday season- hope that you will find answers to your questions and relief for your pain. Hope that the new year will bring you joy and peace.

With the holiday season in full swing, it is good to remember the importance of rest. In the busyness that seems to accompany everyday life, along with holidays thrown in, we forget that winter is a time for rest and renewal. If you live in the northern hemisphere, we recently had winter solstice- the shortest day and the longest night of the year. This marks the beginning of winter. Nature sets the example of rest during winter. Most plants take a break. Many animals hibernate. We need that too.

Rest includes physical, mental, emotional, and spiritual rest. All these aspects intertwine with each other and one being out of balance can affect the other. For example, when looking at physical demand on muscles versus mental, “it has been demonstrated that the same motor units are activated by mental stress as by physical demands…lack of rest and recovery seems even more important for health than the magnitude of stress and physical demands during work” (Lundberg, 2003). Rest is not a luxury. It is an essential aspect of health and well-being.

Happy Holidays!

Reference

Lundberg, U. (2003). Psychological stress and musculoskeletal disorders: psychobiological mechanisms. Lack of rest and recovery greater problem than workload. Lakartidningen, 100(21), 1892-1895. Retrieved from https://europepmc.org/article/med/12815874

4 years ago Endometriosis , Endometriosis Education

A Letter to Providers from Two Endo Patients

Two people with endometriosis wanted to share their story of how providers made a difference in their journey. Based on their experience, they share their thoughts on what healthcare can do to make a difference. A big thank you to all the providers who have helped us on our journey. You will never know how much it meant and what a difference it made in our lives.Read on:

At 14, I got my first period.  I remember distinctly when I saw my regular pediatrician, and she asked about my monthly period.  I told her that it was painful, and I was overwhelmingly exhausted.  I very vividly remember my female pediatrician quietly shutting the door of the exam room and explaining to me that this is “normal”, that she too is often very tired during her period and has cramping.  Little did I realize at that time, that historically and culturally, medicine has diminished and frequently discredited the pain that women had during their menstrual cycles – labeling it as “hysteria”.

When I was first diagnosed with endometriosis, I (along with most newly diagnosed) had no understanding of the challenges that would be placed in front of me.  I naively believed that my doctors would have answers, that I would receive the right treatment, and that I would be able to move on with my life.

And then I realized how woefully incorrect I was.

So, in 2020, what can be done differently?  Can we do better?  WE CAN and WE MUST!

As physicians, you may not ever understand what it is like to have endometriosis. Especially if you are a male.  And that is okay.  We, as patients, understand and do not expect you as a physician to completely get it.

However, please understand that endometriosis does NOT affect every person the same way.  One person may not be able to function, unable to go to school or work, when she has her period.  Another woman may have stage IV endometriosis and adenomyosis and work an incredibly demanding job and have a more demanding schedule- long days, long nights, and often working weekends.  Yet, she still functions and gets by.  While another woman may be struggling to keep up with her college classes so much that she must drop out of college and cannot work due to her pain levels (even though she is found to “only” have stage II endometriosis).  Another woman may be struggling to get pregnant but denies any obvious symptoms of endometriosis- yet during a diagnostic laparoscopy, she is found to have stage III endometriosis.  Here alone are several DIFFERENT women with all quite different presentations of this disease.

In addition to understanding the patient experience, understand that many of us have been through a long journey to get a diagnosis and to find treatment.

Many tell us to get pregnant and we would be cured.  Gynecologists have said that many people experience a reprieve from symptoms during pregnancy and breast feeding.  But have symptoms return shortly after.  What if I took that advice?  As a single woman just trying to finish college, surviving only on heavy duty narcotics, how could I possibly manage the care of a child?  Would I have made a good mother having to take a long leave of absence from my dream job due to severe pain? I was not the first person to ever receive this piece of advice and sadly we will not be the last. (See Myths and Misinformation)

Many have told us that taking hormonal treatments – continuous birth control, Lupron, Synarel, Danazol, Depo Provera, Orilissa, or other like drugs, would make us feel better.   For some people, it may have helped them.  However, many of us have walked away with minimal to no relief – instead, a slew of different side effects.  Hot flashes, migraines, fatigue, brain fog, bone loss, worsening pain.  Sometimes the side effects would go away.  Sometimes not.  As a 21-year-old college student, I had the early onset of osteoporosis.   Eventually these side effects went away, or I was able to reverse them.  For some, they are not as lucky and are stuck with permanent side effects.  I was lucky.  (See Hormonal Treatments)

Sometimes we are told that having surgery every couple of years is something to be expected when living with endometriosis.  Ablation is the only way to remove endometriosis.  Just get used to it, I was told.  That is what happens when you have endometriosis.

And then I learned different.  I found resources such as the Endometriosis Research Center – their Yahoo ListServ (okay so maybe it dates me) and Nancy’s Nook on Facebook.  I learned about excision surgery and found a specialist.   The answer was there all along, but the doctors around me did not know that it was an option.  Some can excise some endometriosis but not all areas- or do not have the knowledge to recognize some different appearances of endometriosis.  Many of us unfortunately must travel to another state or even to another country to seek out better, more specialized care.  Often those impacted by endometriosis must pay privately for expert care or fight their insurance companies for coverage of expert care.

Our health care system can do better.  We CAN do better, and we will DO better.  So, how do we do that? How can patient care providers/health care providers do that?  How can they help their patients as they struggle with endometriosis?

It is called providing patient-centered, evidence-informed, patient care.  So, what does that mean? What does that look like?

Guekens (2018) and his colleagues identify 5 different dimensions of patient-centered endometriosis care:

1. Respect for the patient’s values, preferences, and needs

2. Information, communication, and education

3. Continuity and transition

4. Access to care

5. Technical Skills

From another patient story we see such an example:

When I was in college and my local OBGYN realized that my endometriosis was more complicated and severe, she referred me to a specialist at a university level hospital – her professor.   She realized that I needed care beyond her capabilities, so she referred me out.  THAT is patient-centered, evidence-informed, patient care.

When that specialist respects my hope to finish a year of college, provides me with pain management techniques, and puts off surgery until I am ready.  THAT is patient-centered, evidence-informed, patient care.

Eighteen years ago, I came across an organization called the Endometriosis Research Center and learned from some very smart women and physicians the concept of excision surgery.  I learned about the best evidence-based treatment for endometriosis is excision.

A wise mentor and fellow endometriosis patient once told me that “communication is useless if you perpetuate misinformation” (Pierce-Richards, 2019).   We CAN do better.  It is YOUR responsibility to educate yourself, your staff, and your patients.  What we say about endometriosis matters and it CAN be life changing for that patient, to finally be listened to, their suffering be acknowledged, accepted, and addressed.

Two years ago, my endometriosis symptoms worsened to the point where I could barely function.  Getting to work every day, taking care of my daughter, and just keeping up with day-to-day responsibilities was nearly impossible due to pain and it exhausted me. I spent a lot of time in bed. I initially saw my local OBGYN and contemplated having surgery with her as she was local.  However, after reviewing research and learning how effective excision surgery is, I sought out opinions from a couple of local endometriosis excision specialists and a well-known endometriosis excision specialist across the country. (See Why Excision)  I then spoke with my local primary care physician whom I worked with and told her that we had chosen to travel to Washington to obtain better care. She supported my choice and was instrumental in coordinating my care prior to leaving for Washington and when I returned.  Each transition was easier because she was there advocating for me and was a quick phone call away with any questions or concerns.

What if there was a physician that respected your values, respected you for where you were in your journey, and respected your preferences/needs?

What if there was a physician that, although was not considered an expert in endometriosis, but was able to refer their patients to accurate, up-to-date, reliable sources of information about endometriosis?

What if that very same physician helped facilitate their patient receiving effective, evidence-based treatment – i.e. excision surgery? This physician could write a letter supporting the patient’s decision to seek out expert care to help the patient with their insurance appeals or help ease the transition when they return home after surgery.

What if that physician desires to learn more about endometriosis and wishes to become a specialist? To learn about the expertise of excision surgery and to expand their knowledge?

We can very quickly say (ALL of us) how unhappy we are with the year 2020 and the current state of affairs. 

We can simply blame it on poor reimbursement by insurance companies . Yes, that’s a problem.

We could say that there is not enough time in an appointment to devote to these patients.  Yes, we see that.

We could say that due to COVID, we cannot travel or attend any conferences. Or that we cannot possibly attend another meeting via Zoom.  Yes, we can certainly say that. 

We could say that our budget is limited due to COVID-related shut downs, I cannot afford to spend more on education.  Yes, we could say that too.

Here’s the deal – YOU can be that physician! We could come up with a million reasons why it will not work.   However, YOU always have an opportunity to learn.  Brian Tracy once said “those people who develop the ability to continuously acquire new and better forms of knowledge that they can apply to their work and to their lives will be the movers and shakers in our society for the indefinite future” (Tracy, n.d.).

Will you take the opportunity to be that “mover and shaker” in society that leads to positive change?

References

Geukins, E. I., Apers, S., Meuleman, C., D’Hooghe, T. M., & Dancet, E. A. F. (2018). Patient-centeredness and endometriosis: Definition, measurement, and current status. Best Practice & Research. Clinical Obstetrics & Gynaecology, 50, 11-17. https://doi.org/10.1016/j.bpobgyn.2018.01.009

Pierce-Richards, Susan (2019, November 9-13).  Brokengirl: The Secret Shame of Chronic Pelvic Pain and the Unseen Consequences of our Current Care Paradigm for Endometriosis Care [Conference Presentation]. AAGL 2019 48th Global Conference on MIGS.  Vancouver, British Columbia, Canada.

Tracy, Brian. (n.d.). Quotes by Brian Tracy. Good Reads. https://www.goodreads.com/quotes/524089-those-people-who-develop-the-ability-to-continuously-acquire-new

4 years ago Endometriosis , Endometriosis Education

Endo Basics: What is endometriosis?

Endometriosis has some unique characteristics, and we continue to find out new things about it. Understanding exactly what it is and how it functions can help us make better sense of the symptoms we experience as well as guide our decisions for treatment. Here are some key points to consider:

• Endometriosis is defined as tissue similar to the lining of the uterus (endometrium) that is found outside of the uterus (Becker, 2015).  This can be in the pelvis and abdominal area, but has been found in areas outside the pelvis (like the diaphragm). This means it affects more than just reproductive organs! (See Locations of Endometriosis)
• Endometriosis has some key differences from the lining of the uterus in both its structure and function. Endometriotic lesions are capable of high estrogen production and have a resistance to the effects of progesterone (Cristescu, Velişcu, Marinescu, Pătraşcu, Traşcă, & Pop, 2013). Endometriosis can also produce cytokines and prostaglandins and is capable of the growth of new blood vessels and nerves (Hey-Cunningham, Peters, Zevallos, Berbic, Markham, & Fraser, 2013; Reis, Petraglia, & Taylor, 2013; Bulun et al., 2012; Chaban, 2012). (See Role of Estrogen Receptor-β in Endometriosis and Progesterone Resistance in Endometriosis)
• Endometriosis is an inflammatory disorder that can lead to scarring and adhesions (Becker, 2015; Mao & Anastasi, 2010). (See Inflammation with Endometriosis)
• The severity of symptoms does not necessarily correlate with extent of lesions (McCance & Huether, 2014). (See What influences pain levels)
• The location of the lesions and the presence of adhesions can also affect the symptoms experienced (Lu, Zhang, Jiang, Zou, & Li, 2014). (See Locations of Lesions and Where Pain Is Felt)
• Most symptoms arise from chronic inflammation, noxious chemical release such as prostaglandins, effects on the musculoskeletal system, and/or adhesions (Koga, Yoshino, Hirota, Hirata, Harada, & Osuga, 2014). (See Symptoms)
• An estimated 30-50% of patients with endometriosis are infertile due to the inflammatory environment and physical abnormalities such as adhesions (Koga, Yoshino, Hirota, Hirata, Harada, & Osuga, 2014). (See Fertility Issues)

References

Becker, C. (2015). Diagnosis and management of endometriosis. Prescriber, 26(20), 17-21. 

Bulun, S. E., Monsavais, D., Pavone, M. E., Dyson, M., Xue, Q., Attar, E., … Su, E. J. (2012). Role of Estrogen Receptor-β in Endometriosis. Seminars in Reproductive Medicine,  30(1), 39–45. http://doi.org/10.1055/s-0031-1299596 

Chaban, V. (2012). Primary afferent nociceptors and visceral pain. INTECH Open Access Publisher. Retrieved from http://www.intechopen.com/books/endometriosis-basicconcepts-and-current-research-trends/primaryafferent-nociceptors-and-visceral-pain  

Cristescu, C., Velişcu, A. N. D. R. E. E. A., Marinescu, B., Pătraşcu, A. N. C. A., Traşcă, E. T., & Pop, O. T. (2013). Endometriosis–clinical approach based on histological findings. Rom J Morphol Embryol, 54(1), 91-97. 

Hey-Cunningham, A. J., Peters, K. M., Zevallos, H. B., Berbic, M., Markham, R., & Fraser, I. S. (2013). Angiogenesis, lymphangiogenesis and neurogenesis in endometriosis. Front Biosci (Elite Ed), 5, 1033-56. 

Koga, K., Yoshino, O., Hirota, Y., Hirata, T., Harada, M., & Osuga, Y. (2014). Infertility Treatment of Endometriosis Patients. In Endometriosis (pp. 431-443). Springer Japan. 

Lu, Z., Zhang, W., Jiang, S., Zou, J., & Li, Y. (2014). Effect of lesion location on endometriotic adhesion and angiogenesis in SCID mice. Archives of gynecology and obstetrics, 289(4), 823-830. 

Mao, A. J., & Anastasi, J. K. (2010). Diagnosis and management of endometriosis: The role of the advanced practice nurse in primary care. Journal of the American Academy of Nurse Practitioners, 22(2), 109-116.

McCance, K. L., & Huether, S. E. (2014). Pathophysiology: The Biological Basis for Disease in Adults and Children (7th ed.). St. Louis, MO: Elsevier.

Reis, F. M., Petraglia, F., & Taylor, R. N. (2013). Endometriosis: hormone regulation and clinical consequences of chemotaxis and apoptosis. Human reproduction update, 19(4), 406-418. 

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