NEW 2019 Endometriosis Information!

Last month the 10th Annual Endometriosis Medical Conference was hosted by the Endometriosis Foundation of America. For 20 hours, leading researchers, doctors, surgeons, and healthcare entrepreneurs presented on cutting edge findings that are advancing the recognition, understanding, and treatment of endometriosis. Following these two days was a Patient Awareness Day which had presenters with more personal experiences with the chronic illness. Topics such as acupuncture, physical therapy, nutrition, surgery, sexual functioning, hormone therapy, and genetics to list a few were shared to women currently struggling with endometriosis. Patient panels often brought the realistic and personal implications of living with endometriosis to light, eliciting strong emotions and a cathartic atmosphere.

The experience was intense while inducing both fear and hope at times. Below are a few key points gained from the conference that women should be aware of:

Cause -

  • The true cause of endometriosis is still unknown, however there is growing evidence from genetic and immunological research that suggest there is a level of immune dysregulation. Similar processes to those found in cancer patients are also found in endometriosis patients: cellular mutations, epigenetic changes, and damaging inflammatory cytokines (in essence a woman’s body is not able to regulate endometrial growth outside of the uterus). Furthermore, women’s bodies try to prevent the spread of endometrial tissue outside of the uterus which results in increased inflammation, which can cause pain and cyclically feed the immune dysregulation via cytokines.

Diagnosis -

  • There is still a significant delay in diagnosis due to the variety of external presentations endometriosis exhibits (GI issues, urinary concerns, pelvic pain, fatigue, etc.), as well as lack of awareness throughout the general population and medical fields. Delay ranges from approximately 2 years for infertility patients, to 8 ½ years for women in pain. Additionally, some women are asymptomatic and may not experience any of the symptoms. So the percent of women with endometriosis may be higher than one in ten.
  • New potential methods of diagnosis are emerging every year. Many of these methods are founded in genetics; 15 genetic markers have emerged that may lead to an endometriosis diagnosis (stages III and IV).
  • 10% of women may be a lowball estimate; rates of endometriosis may be as high as 20-30%.
  • Approximately ⅔ of women who seek out exploratory laparoscopic surgery for diagnosis of endometriosis experience pain, while ⅓ experience infertility.
  • Endometriosis can overlap with other reproductive health concerns including fibroids, polyps, epithelial ovarian cancers (endometrioid and clear cell cancers), and other mullerian cell mutations (such as endosalpingiosis).

Treatment -

  • The “best treatment” would be an estrogen inhibitor, as the cycle of inflammation and cell growth feeds off of estrogen. Endometrial tissue actually creates its own estrogen, as well as utilizes the estrogen in our blood stream. It has been found that women on hormone therapies such as Lupron (gonadotropin-releasing hormone [GnRH] agonists) and continuous contraception (luteinizing hormone [LH] and follicle stimulating hormone [FSH] inhibitors) CAN have progression of their endometriosis possibly because of the endometrial tissues ability to create its own estrogen. Estrogen promotes inflammation and no treatment has been identified to significantly address this phenomenon.
  • ELAGOLIX (also known as ORILISSA)- The conferences reaction to the “new drug” Orilissa sparked charged discussions of the pharmaceutical industry and the lengths it will go to for distributing and selling their products. Known as ‘Lupron in a Pill’, the clinical trials for Orilissa were tainted with controversial methodological practices. To start the cut off age for the main trial was increased to 49 years old (an age when many women are either perimenopausal or menopausal and may naturally have a reduction of symptoms), while the Lupron cutoff age was 40. Furthermore, their dropout rate was high (20%) and due to “adverse effects” and “withdrew consent” however they did not request a reason for the withdrawal of consent. Was their drop-out due to side effects? Lastly, most women did not respond to this drug, and nearly all women experienced similar side effects to that of Lupron (the main complaint related to that treatment).

Effect -

endometriosis

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  • Endometriosis can CAUSE and exacerbate anxiety and depression. A study from Yale in which mice were manipulated to experience retrograde menstruation (a process that allows endometrial tissue to escape the uterus and enter into your body cavity), found that the mice who had endometriosis developed anxiety and depression.  Their control population did not have elevation in entirety or depression. AND some of these mice did not experience alleviation of their mental health symptoms even after their endometriosis was treated through hormone therapy.
  • Sexual functioning - Dyspareunia, or pain before, during, and/or after sexual intercourse is a common symptom for women with endometriosis. However, it may be more than endometrial lesions that worsens dyspareunia! In fact, the inflammation and neural mapping related to the pain from inflammation play a larger role in dyspareunia than the endometrial cells themselves. This pain can vary in frequency, duration, and intensity for each woman. The development of vaginismus (painful spasmodic contractions of the vaginal wall) often occurs from a woman’s fear/anxiety related to painful sex and can make having sex and using tampons difficult. Approximately 66% of women with endometriosis fear sex! Finding a sex therapist and/or pelvic floor therapist who specializes in reproductive health and endometriosis can often alleviate symptoms related to dyspareunia and vaginismus.

Fertility -

  • Endometriomas (or endometrial cysts) negatively impact an egg’s development to maturity by creating ovarian toxicity (large amounts of inflammation). The presence of an endometrioma(s) often decreases the number of follicles, eggs, and embryos a woman generates, as well as a woman’s AMH level which in turn damages her ovarian reserve (the approximate number of remaining eggs). However, the presence of endometriomas DOES NOT impact an eggs ability to implant, nor does it negatively impact pregnancy rates, miscarriage rates, rates of malformation at birth, or the chromosomal quality of a woman’s egg.
  • Interestingly, the number of women who are diagnosed with endometriosis after starting fertility treatments has dropped by over 10% in the past 20 years. Conversely, the number of “unexplained” cases of infertility has increased by 50% over the same span of time. Even though the rate of conception increases and pregnancy loss decreases post laparoscopic surgery, fertility clinics are shying away from offering exploratory surgery as an option. Which begs the question- Do more women with “infertility” actually have a diagnosis of endometriosis? It is known that 30-50 percent of women with endometriosis struggle with infertility, and the ASRM estimates that up to 50% of women with infertility have endometriosis! SO, why is the number of laparoscopic surgeries (that lead to diagnosis) going down?!
  • The presence of adenomyosis (endometrial tissue in the uterine wall) decreases live birth rates by 41%. Adenomyosis impacts an embryos ability to implant and grow successfully within the uterus. The diagnosis of adenomyosis occurs through laparoscopic surgery, however can often be spotted on an ultrasound due to the thickening effect it has on the uterine wall. Approximately 92% of women with Stage I or II endometriosis who also reported significant back pain had adenomyosis as well as endometrial lesions (spots) within their abdominal cavity. In Europe, surgical removal of adenomyosis is more advanced and popular than in the US; and of women who have the surgical removal (often with hopes of increasing pregnancy success) about 56% will see recurrence after resection.
  • When it comes to ovarian stimulation for IVF or egg preservation, women with endometriosis should avoid taking estrogen! Endometrial lesions can grow faster due to the significantly increased amount of estrogen that is introduced into the body from the hormones given during this process. Instead, women should find a reproductive endocrinologist that can offer alternative drugs that will in effect aid in egg development for IVF or egg preservation.
If you want to learn more about how fertility counseling can help you build the future you want, you can contact Virginia Schwager through her website: https://virginiaschwager.com/ or through email at psyd.ginny@gmail.com

Resources!

Podcasts advertised at The Patient Day: The Women’s Pelvic Health Podcast, The Heavy Flow Podcast, and Lady Parts by Andrea Muraskin

Join Current Research: PHENDO App (www.citizenendo.org/phendo) from Columbia University & the ROSE (Research OutSmarts Endometriosis) Study (www.researchoutsmartsendo.org)

Stay up to date on the latest news: www.endonews.com

Share and read women’s stories related to endometriosis: www.endofound.org/the-blossom

Government Action: sign a petition that will increase education for young women in schools about menstrual disorders www.endofound.org/letstalkperiod

Become an Educator: The Endometriosis: Promoting Outreach and Wide Recognition (ENPOWR) Project www.endofound.org/enpowr

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