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3 years ago Resources 4 comments

5 Podcasts About Endometriosis to Listen to Right Now

Do you like listening to podcasts and want to learn more about endometriosis? We got you. There are several teams out there trying to make some sense of endometriosis and bring real-world stories as well as education and news to you. Here we are introducing some podcasts that we found interesting. Please keep reading to learn more about these podcasts.

Table of contents

1- In Sixteen Years of Endometriosis

“Laugh, cry, and shout with us as we talk all things endometriosis. We’re 2 witty best friends that pride ourselves on sharing accurate, well-researched information. We delve into all those embarrassing did-that-really-just-happen?! endo stories, talk vulnerably about our personal growth, and share disease facts with a side of humor. We hope our podcast will support and empower you. —Important note on inclusive language: We hadn’t yet been educated about inclusive language when we began our podcast; but after learning, we used this language midway through the show and going forward.”

2- The Cycle

“The Cycle is a podcast about endometriosis stories from patients as well as helpful information about the disease and ways to cope with it. Our goal is to share endo stories from people all over the world to empower you.

Medical disclaimer: THIS PODCAST IS NOT INTENDED FOR THE PURPOSE OF PROVIDING MEDICAL ADVICE. All information, content, and material of this podcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider.”

3- Not Defined by Endo

“Not Defined by Endo Podcast, hosted by Endometriosis Warrior Teniola Ogunro, is created for and dedicated to women who have been diagnosed with endometriosis or who suffer from symptoms that they suspect to be caused by endometriosis. Every week, Teniola shares her own experiences, interviews health professionals and endo specialists who provide their much-needed insight and speaks to fellow endometriosis warriors who know what it feels like to live with and fight an incurable disease.”

4- Endometriosis | Journey to Butterfly

“This podcast is about my journey with endometriosis over the last 15 plus years including my present day. I will talk all things endometriosis-symptoms, surgery, medical appointments, medications, natural methods, products, eating habits and more. Support this podcast: https://anchor.fm/journeytobutterfly/support.”

5- Peace With Endo

“Peace With Endo encompasses the journey to naturally managing endometriosis through diet, lifestyle and mindful thinking. Endometriosis impacts your body, mind and spirit. (I know this all too well). All three factors need to be addressed if you’re going to heal. I invite you to join the journey.”

Source : Apple podcast

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3 years ago Resources No comment

4 Endometriosis Book You Must Read

Disclaimer: This post is not a paid promotion. iCareBetter does not do affiliate marketing and does not get paid if you decide to purchase any of these books. This post is purely informational, and we do not give any medical advice.

Table of contents

1- Beating Endo

How to Reclaim Your Life from Endometriosis

By Iris Kerin Orbuch MD (Author), Amy Stein DPT (Author)

“Approximately one out of every 10 women has endometriosis, an inflammatory disease that causes chronic pain, limits life’s activities, and may lead to infertility. Despite the disease’s  prevalence, the average woman may suffer for a decade or more before receiving an accurate diagnosis. Once she does, she’s often given little more than a prescription for pain killers and a referral for the wrong kind of surgery. Beating Endo arms women with what has long been missing—even within the medical community—namely, cutting-edge knowledge of how the disease works and what the endo sufferer can do to take charge of her fight against it.”

2- The Endometriosis Health and Diet Program

Get Your Life Back

by Dr. Andrew S. Cook MD FACOG (Author), Danielle Cook MS RD CDE (Author)

“This timely book will dispel the myths surrounding endometriosis and provide scientifically based recommendations that are easy to understand and follow. It offers recommendations on treating root causes rather than just symptoms — it’s a comprehensive, integrative program for treating endometriosis and serves as a starting point for building an individualized program”

3- Know Your Endo

An Empowering Guide to Health and Hope With Endometriosis

by Jessica Murnane  (Author)

“Learn how to navigate your life with endometriosis in this essential and hopeful guide–including tools and strategies to gain a deeper understanding of your body and manage chronic pain through diet, movement, stress management, and more.”

4- The Endo Patient’s Survival Guide

A Patient’s Guide to Endometriosis & Chronic Pelvic Pain

by Andrew S. Cook MD FACOG  (Author), Libby Hopton MS (Author), Danielle Cook MS RD CDE (Author)

“The Endo Survival Guide is the patient’s essential companion to living with and overcoming endometriosis and pelvic pain: from seeking help and getting an initial diagnosis, to navigating treatment options, and achieving optimal relief and wellness.”

Source: Amazon

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3 years ago Resources No comment

6 Movies & Documentaries About Endometriosis You Need to Watch

Some popular movies and documentaries about endometriosis.
Disclaimer: we don’t necessarily approve of all the content in these shows. But still the impact of these efforts on raising endometriosis awareness is important. We live in a world where most people haven’t even heard the word “endometriosis.” This leads to gaslighting and dismissal of a lot of patients. Therefore, any efforts like these documentaries and movies can change the life of many.

1- All about NINA – Drama, 97 min

“Nina Geld, a brilliant stand-up comedian onstage but an emotional mess offstage, is forced to face her troubled past when she meets Rafe”

2- Endo what? – Documentary

“Women who are suffering from endometriosis and experts discuss treatments for the disease.”

3- The painful truth – Documentary

“a film about endometriosis and adenomyosis”

4- A thousand needles – Short, 29 min

“A Thousand Needles Film is a documentary about the effects of women’s sexual and reproductive health issues like endometriosis on a woman’s life”

5- End-o – Short, 15 min

“Jaq is a typical young woman, navigating the foibles of life, love and endometriosis.”

6- The resilience of woman in pain – short, 27 min

“Rose has been suffering in silence from endometriosis and chronic illness for years. But it’s beginning to wear her down. An unexpected act of kindness from a stranger shows her the power of human connection during hardship.”

source: IMDB & Google Library

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3 years ago Resources No comment

Why was iCareBetter Built?

A message from Dr. Saeid Gholami, the founder and CEO at iCareBetter:

Table of contents

The Story Behind the Movement

When I used to practice as a primary care doctor, I saw patients’ struggles to find doctors that could do proper endometriosis surgery. Endometriosis patients often came back to our clinic month after month without change in their pain and suffering. Many patients had multiple failed surgeries. That was because almost all gynecologists claimed expertise in endometriosis surgery. Unfortunately, patients could not differentiate truly skilled gynecologists from others for treating endometriosis. One specific patient that I still think of after a decade was a thirty-five years old lady with rectal bleeding during her periods. I recall her coming back every month until everyone believed she was seeking attention. And no one could help her. We tried hard to find endometriosis surgeons for the patients, but no doctor would be able to show enough knowledge and expertise to earn our trust. Some of them claimed endometriosis expertise, but after a couple of questions, we realized that they could not manage the complexity of this disease.

Someone needs to stand up and build a solution when there is a problem. That is how the world has improved since the beginning of humanity. And it was our turn to make something to enhance the world of endometriosis patients. We created iCareBetter to help patients find doctors who possess the knowledge and surgical skills needed for endometriosis treatment. iCareBetter makes the search for endometriosis doctors much more effortless and removes the randomness of finding an endometriosis specialist. By having a platform of peer-vetted endometriosis surgeons, patients can focus on finding a doctor that will match their criteria and personal needs. Criteria such as location, cost, team, and areas of expertise can define a patient’s path to recovery. And patients do not have to worry about the doctor’s basic understanding, empathy, and skills of endometriosis care.

Searching for an endometriosis surgeon is very hard. Most of the time, you have no idea about their surgical skills and whether they will be able to treat your case. iCareBetter evaluates gynecology surgeons for their skills in managing different types and locations of endometriosis. Their surgical expertise is peer vetted, so their ability to do safe surgery. We bring endometriosis specialists closer to patients. 

What is iCareBetter’s mission? 

To help endometriosis patients receive efficient care. To educate patients on endometriosis, to better understand endometriosis and patient’s needs. Patients wait years to receive a diagnosis, are sent to various specialties, and undergo multiple surgeries, and very few people take their pain seriously. iCareBetter mission is to improve endometriosis patients’ lives by providing them with what is needed the most; doctors that can handle each individual’s unique case.

Who is behind iCareBetter? 

I, Dr. Saeid Gholami, am the founder of iCareBetter. I have training as an MD, MBA, and MS in Digital Technology. My training is not in OBGYN, and at the moment, I do not provide care to patients. I founded iCareBetter with my financial resources and then had some family and friends invest in the company to support us. None of the investors are related to the current doctors on the website. And none of the doctors on the website have any ownership or leadership position in the company.

Last words

Like every other life-changing initiative, ours started with a personal story and someone who wanted to make a change. My personal goal has been to improve patients’ lives at the minimum cost for them. And we are just at the beginning of the road. There are many patients with endometriosis who need help. And we have several problems to solve for the patients and the community. Nothing will stop us as long as endometriosis patients use iCareBetter to find hope and care for their debilitating pain and suffering.

3 years ago Resources

Transgender and Endometriosis Studies

“Dysmenorrhea was diagnosed in 35 transmasculine persons. Mean age was 14.9 years ± 1.9 years. Twenty-nine (82.9%) were diagnosed after social transition. Twenty-three (65.7%) were first treated with combined oral contraceptives, but 61% (14/23) discontinued or transitioned to alternative therapy. Twelve patients with dysmenorrhea alone initiated testosterone, and 33.3% (4/12) experienced persistent symptoms. Only seven with dysmenorrhea (20.0%) were laparoscopically evaluated for endometriosis, and it was confirmed in all seven. Six had stage I disease, and one had stage II. Three were diagnosed after social transition (42.9%), with one diagnosed 20 months after initiating testosterone. Their endometriosis was treated with combined oral contraceptives, danazol or progestins; four experienced suboptimal response while on these therapies alone. Two of those with suboptimal response subsequently resolved their dysmenorrhea when utilizing testosterone. Two out of five patients with endometriosis initiated testosterone and experienced persistent symptomatology with combined testosterone and progestin therapies.

“Conclusion: This is the first study characterizing endometriosis in transmasculine persons. Evaluation for endometriosis was underutilized in transmasculine persons with dysmenorrhea, despite those who underwent laparoscopic evaluation having disease confirmation. While testosterone can resolve symptoms in some, others may require additional suppression. Endometriosis should be considered in transmasculine persons with symptoms even when utilizing testosterone.”

“This video highlights the importance of evaluating postmenopausal chronic pelvic pain patients for endometriosis by presenting an unusual case of peritoneal endometriosis in a transgender male patient. A 25-year-old nulligravida transgender male presents with a long history of debilitating chronic pelvic pain, despite previous hysterectomy, bilateral salpingo-oophorectomy, and long-term testosterone therapy. Peritoneal endometriosis is visualized laparoscopically involving the posterior cul-de-sac and rectal serosa, and is excised. The histopathology confirms the presence of peritoneal endometriosis in the aforementioned areas. The patient’s recovery is uneventful. At 4 week and 9 month follow-up, the patient reports resolution of his pelvic pain and an improved quality of life.”

3 years ago Resources

LGBTQIA+ Resources

A word from Nook Admins: We recognize, embrace, and celebrate the diversity of sex, genders, and sexual orientation in the endometriosis community. We also recognize the additional, challenging barriers to care that result for LGBTQIA+ identifying folks in a culture that is largely centered on and designed for cisgender, heterosexual individuals. 

We are committed to using language that respects all sexes, genders, and sexual orientations. We recognize that much of the scientific and lay literature contains gendered language and presents endometriosis research, experience, and treatment priorities through cisgender, heterosexual lenses. We will actively work to identify more inclusive resources that address the needs for everyone with endometriosis. 

Words matter:

We are all socialized into the culture around us. In the US (and much of the world), the cultural messages and are centered on the cisgender, heterosexual experience. By that I mean the experience of individuals whose gender identity aligns with the sex assigned to them at birth (cisgender), and that their sexual orientation is towards those of the other gender (heterosexual). This paradigm also erroneously presumes that there are only 2 genders. But sex, gender, and sexual orientation are not binary (one or the other). Rather, sex, gender, and sexual orientation are not binary at all – they are spectrums. 

It is incredibly important to avoid gendered and hetero-centric language and instead use more inclusive language. Asking and using a person’s pronoun, offering your own pronoun, referring to folks in the singular “they” if you do not know their gender, using the term “spouse” or “partner(s),” and referring “people” or “folks” with endometriosis. 

Barriers to care – navigating gendered, heterosexist health care:

Health care centered around cisgender, heterosexual individuals imposes numerous additional barriers to LGBTQIA+ identifying folks. 

“The 2015 U.S. Transgender Survey (USTS) is the largest survey examining the experiences of transgender people in the United States, with 27,715 respondents from all fifty states, the District of Columbia American Samoa, Guam, Puerto Rico, and U.S. military bases overseas. The findings reveal disturbing patterns of mistreatment and discrimination and startling disparities between transgender people in the survey and the U.S. population when it comes to the most basic elements of life, such as finding a job, having a place to live, accessing medical care, and enjoying the support of family and community. Survey respondents also experienced harassment and violence at alarmingly high rates. Several themes emerge from the thousands of data points presented in the full survey report.” 

“Menstruation has been historically known as a function of the female body that affects women. Trans and non‐binary people face this biological function as a potential social signal of gender/sex identity. This research involves virtual ethnographic content analysis of menstruation discourse written by or informed by trans and non‐binary people in addition to 19 interviews with trans and non‐binary participants. The research yields analysis within three gendered/sexed social spheres that trans and non‐binary bodies contest: (1) the gendering of menstrual products; (2) men’s restrooms; and (3) health care. The findings depict the variety of strategies trans and non‐binary people employ when navigating and interpreting menstruation in relationship to their gender/sex identities.”

“In 2018-2019, I conducted 21 formal interviews with trans and nonbinary emerging adults (18-29) across the United States. The resulting research paper was published online in February 2020, but Jac Dellaria translated the findings and quotes into stunning comic panels, presenting us all with a visual narrative of menstruation for trans and genderqueer people.”

Finding care:

Finding care that is safe, validating, and respects the needs of LGBTQIA+ identifying individuals can be daunting. We hope to build more resources to help identify affirming care providers who treat endometriosis. Here is a general resource for finding LGBTQIA+ affirming health care organizations.

  • Human Rights Campaign Health Equality Index: 

Download the report here https://www.hrc.org/HEI

Search the HEI here https://www.hrc.org/hei/search

“Healthcare Equality Index (HEI) is the national LGBTQ benchmarking tool that evaluates healthcare facilities’ policies and practices related to the equity and inclusion of their LGBTQ patients, visitors and employees.”

Advocating:
Do you want to learn more about improving care for the LGBTQIA+ community?

3 years ago Resources

Pregnancy and Endometriosis

Endometriosis is often associated with infertility. Infertility does not mean you cannot get pregnant, but rather there is a delay in achieving pregnancy. It is technically defined as not achieving a “clinical pregnancy after 12 months or more of regular unprotected sexual intercourse” (World Health Organization, n.d.). An estimated 30–50% of women with endometriosis are reported to have difficulty with infertility (Macer & Taylor, 2012). In addition, endometriosis does not have to be an “advanced stage” for it to affect fertility (Bloski & Pierson, 2008).

“Current evidence indicates that suppressive medical treatment of endometriosis does not benefit fertility and should not be used for this indication alone. Surgery is probably efficacious for all stages of the disease.”

(Ozkan, Murk, & Arici, 2008)

With infertility being related to endometriosis, it is unbelievable that pregnancy might still be recommended as a treatment for endometriosis. While some may have a temporary relief of symptoms, others can experience an increase. In fact, some “imaging and histopathology studies of endometriotic lesions during pregnancy show that they may grow rapidly during pregnancy” (Leeners & Farquhar, 2019). Pregnancy will not treat or cure endometriosis. Research has stated that “women aiming for pregnancy on the background of endometriosis should not be told that pregnancy may be a strategy for managing symptoms and reducing progression of the disease” (Leeners et al., 2018). This is echoed again by Leeners and Farquhar (2019) who point out that “the decision to have children should not be influenced by any perceived benefit of improving endometriosis but should be made solely on the wish for parenthood.”

While the overall risk is still low, endometriosis has been associated with some difficulties during pregnancy. Zullo et al. (2017) looked at 24 studies involving almost 2 million women with endometriosis to consider the possible effects of endometriosis during pregnancy . They found that “women with endometriosis have a statistically significantly higher risk of preterm birth, miscarriage, placenta previa, small for gestational age infants, and cesarean delivery” compared to healthy controls (Zullo et al., 2017). Zullo et al. (2017) did not find any significant association with gestational hypertension and preeclampsia with endometriosis; however, adenomyosis has been found to have some correlation with pregnancy-induced hypertension and preeclampsia (Porpora et al., 2020). Adenomyosis has been found to result in a higher likelihood of preterm birth, small for gestational age, and pre-eclampsia (Razavi et al., 2019). Adenomyosis and endometriosis frequently coexist, so it can be hard to determine how much is one or the other causing these effects (Choi et al., 2017).

On a positive note, Porpora et al. (2020) noted that “no difference in fetal outcome was found” and concluded that “endometriosis does not seem to influence fetal well-being”. This was also found by Uccella et al. (2019), stating that “neonatal outcomes are unaffected by the presence of the disease”. Again, a normal pregnancy is still highly possible.

Studies:

  • Leone Roberti Maggiore, U., Ferrero, S., Mangili, G., Bergamini, A., Inversetti, A., Giorgione, V., … & Candiani, M. (2016). A systematic review on endometriosis during pregnancy: diagnosis, misdiagnosis, complications and outcomes. Human reproduction update, 22(1), 70-103. Retreived from https://academic.oup.com/humupd/article/22/1/70/2457880

“The complications of endometriosis during pregnancy represent the second main issue of this systematic review. These events are rare but represent life-threating conditions that require, in most of the cases, surgical operations to be managed. Acute complications of pre-existing endometriosis may be explained by three different pathogenic mechanisms: endometriosis-related chronic inflammation that makes tissues and vessels more friable (Rossman et al., 1983), adhesions which may cause increasing traction on surrounding structures when the uterus is enlarging (Manresa et al., 2014) and intrusion of decidualized endometriotic tissue into the vessel wall and structures that can increase backpressure, predisposing to tissue rupture (O’Leary, 2006). A total of 76 cases of endometriosis complications during pregnancy have been reported; SH (n = 20), bowel perforation (n = 16) and rupture of endometriomas (n = 14) are the commonest events. Despite the clinical relevance of acute complications during pregnancy leading to potentially life-threating situations for both the mother and the fetus, the rarity of such conditions, as reported in literature, should be underlined. It is also likely that the frequency of these events is underestimated because of unreported cases, giving rise to the need for large observational studies to assess the true incidence of these complications. Due to the unpredictability of these complications, no specific recommendation for additional interventions to the routine monitoring of pregnancy of women with known history of endometriosis is advisable. ”

  • Lazzeri, L., Exacoustos, C., Lariola, I., De Felice, G., & Zupi, E. (2016). OP34. 08: Complications during pregnancy and delivery in women with untreated rectovaginal deep endometriosis. Ultrasound in Obstetrics & Gynecology, 48, 166-166. Retrieved from http://onlinelibrary.wiley.com/doi/10.1002/uog.16494/full

“Women with incompletely removed posterior DIE showed high complications rate during pregnancy and delivery. In particular the presence of posterior DIE is related to a high incidence of preterm delivery, placenta previa and also to delivery complications requiring often high surgical specialist treatment.”

  • Kyozuka, H., Nishigori, H., Murata, T., Fukuda, T., Yamaguchi, A., Kanno, A., … & Yasumura, S. (2020). Effect of Prepregnancy Anti-Inflammatory Diet on Pregnant Women with Endometriosis: The Japan Environment and Children’s Study. Retrieved from https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3529446

“Increased risk of preterm birth (PTB) in endometriosis is thought to be brought by chronic inflammatory conditions….”

“Results: Of the 9,186 pregnant women in the JECS, 4,119 (44.8%) had obstetrical complications; 330 participants reported a diagnosis of endometriosis before pregnancy, and these women were at higher risk for complications of pregnancy than those without a history of endometriosis (odds ratio (OR) = 1.50; 95% confidence interval (CI) 1.20 to 1.87). Logistic regression analyses showed that the adjusted OR for obstetrical complications of pregnant women who conceived naturally and had a history of endometriosis was 1.45 (CI 1.11 to 1.90). Among pregnant women with endometriosis, the ORs of preterm premature rupture of the membranes (PROM) and placenta previa were significantly higher compared with women never diagnosed with endometriosis who conceived naturally or conceived after infertility treatment, except for ART therapy (OR 2.14, CI 1.03–4.45 and OR 3.37, CI 1.32–8.65). Conclusions: This study showed that endometriosis significantly increased the incidence of preterm PROM and placenta previa after adjusting for confounding of the data by ART therapy.”

“Among 733 pregnancies included in the study, 566 deliveries were recorded (77.2%), of which 535 were singleton (72.9% of pregnancies) and 31 twins (4.2%). SGA was observed in 81 of 535 (15.1%) singleton pregnancies and in 9 of 31 (29%) twin pregnancies. PT occurred in 53 of 535 (9.9%) singleton pregnancies and in 19 of 31 (61.2%) twin pregnancies. The number of singleton and multiple pregnancies complicated by placenta previa were, respectively, 9 of 535 (1.7%) and 0 of 31. The independent factor found to relate to SGA was the absence of endometriomas; conception with the use of assisted reproductive technologies (ART) only tended toward statistical significance. Independent factors found to increase risk of PT were conception with the use of ART, body mass index >30 kg/m 2, and surgery of deep endometriosis infiltrating the rectum and the bladder. Independent factors associated with placenta previa were conception with the use of ART and history of stage III or IV endometriosis. Conclusions: The risk of SGA and PT is increased in women with a history of surgery for endometriosis, and a high rate of conception with the use of ART may jeopardize outcomes.”

References

Bloski, T., & Pierson, R. (2008). Endometriosis and chronic pelvic pain: unraveling the mystery behind this complex condition. Nursing for women’s health, 12(5), 382-395. doi: 10.1111/j.1751-486X.2008.00362.x

Choi, E. J., Cho, S. B., Lee, S. R., Lim, Y. M., Jeong, K., Moon, H. S., & Chung, H. (2017). Comorbidity of gynecological and non-gynecological diseases with adenomyosis and endometriosis. Obstetrics & gynecology science, 60(6), 579. Retrieved from https://synapse.koreamed.org/upload/SynapseData/PDFData/3021ogs/ogs-60-579.pdf

Leeners, B., Damaso, F., Ochsenbein-Kölble, N., & Farquhar, C. (2018). The effect of pregnancy on endometriosis—facts or fiction?. Human reproduction update, 24(3), 290-299. Retrieved from https://doi.org/10.1093/humupd/dmy004

Leeners, B., & Farquhar, C. M. (2019). Benefits of pregnancy on endometriosis: can we dispel the myths?. Fertility and sterility, 112(2), 226-227. Retrieved from https://doi.org/10.1016/j.fertnstert.2019.06.002

Macer, M. L., & Taylor, H. S. (2012). Endometriosis and infertility: a review of the pathogenesis and treatment of endometriosis-associated infertility. Obstetrics and Gynecology Clinics, 39(4), 535-549. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538128/pdf/nihms422379.pdf

Ozkan, S., Murk, W., & Arici, A. (2008). Endometriosis and infertility: epidemiology and evidence‐based treatments. Annals of the New York Academy of Sciences, 1127(1), 92-100. DOI: 10.1196/annals.1434.007

Porpora, M. G., Tomao, F., Ticino, A., Piacenti, I., Scaramuzzino, S., Simonetti, S., … & Benedetti Panici, P. (2020). Endometriosis and pregnancy: a single institution experience. International journal of environmental research and public health, 17(2), 401. Retrieved from https://www.mdpi.com/1660-4601/17/2/401

Razavi, M., Maleki‐Hajiagha, A., Sepidarkish, M., Rouholamin, S., Almasi‐Hashiani, A., & Rezaeinejad, M. (2019). Systematic review and meta‐analysis of adverse pregnancy outcomes after uterine adenomyosis. International Journal of Gynecology & Obstetrics, 145(2), 149-157. Retrieved from https://www.endometriozisdernegi.org/konu/dosyalar/pdf/makale_ozetleri/Mayis2019/makale17.pdf

Uccella, S., Manzoni, P., Cromi, A., Marconi, N., Gisone, B., Miraglia, A., … & Ghezzi, F. (2019). Pregnancy after endometriosis: maternal and neonatal outcomes according to the location of the disease. American journal of perinatology, 36(S 02), S91-S98. DOI: 10.1055/s-0039-1692130

World Health Organization. (n.d.). Infertility definitions and terminology. Retrieved from https://www.who.int/teams/sexual-and-reproductive-health-and-research/areas-of-work/fertility-care/infertility-definitions-and-terminology

Zullo, F., Spagnolo, E., Saccone, G., Acunzo, M., Xodo, S., Ceccaroni, M., & Berghella, V. (2017). Endometriosis and obstetrics complications: a systematic review and meta-analysis. Fertility and sterility, 108(4), 667-672. Retrieved from https://doi.org/10.1016/j.fertnstert.2017.07.019

3 years ago Resources

Teens and Endometriosis

Endometriosis, even deep infiltrating endometriosis, can affect teenagers. Saridogan (2017) reports that endometriosis is a common in teens who have chronic pelvic pain, and that deep infiltrating and ovarian endometriosis are found in teens- not just “superficial” disease. Yeung, Gupta, and Gieg (2017) state that “surgical management (especially by an expert surgeon) has been shown to be beneficial in reducing pain, improving infertility, and preventing progression or recurrence of disease” in teenagers. Read more below:

Studies:

“Endometriosis is a common finding in adolescents who have a history of chronic pelvic pain or dysmenorrhoea resistant to medical treatment, however the exact prevalence is unknown. Both early/superficial and advanced forms of endometriosis are found in adolescents, including ovarian endometriomas and deep endometriotic lesions. Whilst spontaneous resolution is possible, recent reports suggest that adolescent endometriosis can be a progressive condition, at least in a significant proportion of cases. It is also claimed that deep endometriosis has its roots in adolescence. Optimum treatment is far from clear and long term recurrence is still a significant problem. The most frequently reported treatment approach in the published literature is a combination of surgery and postoperative hormonal treatment with the combined oral contraceptives, progestins, levonorgestrel intrauterine system or gonadotrophin releasing hormone analogues. Use of gonadotrophin releasing hormone analogues and long term progestins should be carefully considered due to concerns over continuing bone formation in this age group. There is currently no consensus as to whether surgery should be avoided as much as possible to prevent multiple operations in the long term, or surgical treatment should be considered at an early stage before more severe lesions develop. Further research is required to determine which approach would offer a better long term outcome.”

“The recognition and management of endometriosis in the adolescent patient is challenging. A strong clinical suspicion for endometriosis should be maintained in the adolescent who suffers from acyclic pelvic pain as well as absenteeism from school and lack of participation in daily activities. Risk factors include the presence of an obstructive Mullerian anomaly, a family history of endometriosis, and conditions that prolong exposure to endogenous and exogenous estrogens. Empiric medical therapy with nonsteroidal anti-inflammatory drugs and combined oral contraceptive pills may be considered in most adolescents with endometriosis. Failure of empiric therapy may warrant diagnostic laparoscopy, which affords a concomitant opportunity for treatment via excision of endometriosis. Endometriotic implants in the adolescent tend to be more atypical, appearing red/flame-like, clear/polypoid, or vesicular. Endometriosis tends to recur more often in adolescents when compared with adults, and the role of postoperative medical therapy for the suppression of disease progression is not entirely clear. Current knowledge on the impact of adolescent endometriosis on future fertility is limited but overall reassuring.”

  • Yeung Jr, P., Sinervo, K., Winer, W., & Albee Jr, R. B. (2011). Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary?. Fertility and sterility, 95(6), 1909-1912.  Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/21420081 

“Complete laparoscopic excision of endometriosis in teenagers–including areas of typical and atypical endometriosis–has the potential to eradicate disease. These results do not depend on postoperative hormonal suppression. These data have important implications in the overall care of teenagers, regarding pain management, but also potentially for fertility. Further large comparative trials are needed to verify these results.”   

“The majority of adolescent girls with chronic pelvic pain not responding to conventional medical therapy have endometriosis (up to 80%). Laparoscopy with biopsy is the only way to diagnose endometriosis in the adolescent population, and depends on recognition of atypical manifestations of the disease. Surgical management (especially by an expert surgeon) has been shown to be beneficial in reducing pain, improving infertility, and preventing progression or recurrence of disease. Postoperative hormonal suppression helps reduce pain symptoms and recurrence of endometriomas, but it does not seem to prevent disease recurrence or progression of peritoneal endometriosis, and has not been shown to improve future fertility. Postoperative suppression until pregnancy is based on expert opinion only. There is a need for good quality properly randomized trials.”

“An increasing body of literature suggests that advanced-stage endometriosis (revised scoring system of the American Society for Reproductive Medicine Stage III or IV) and deeply invasive endometriosis are relatively common in adolescents. There remains limited data on the efficacy of postoperative hormonal management of endometriosis in the adolescent population. Summary: Strong consideration should be made for surgical diagnosis of endometriosis in adolescents with pelvic pain, including noncyclic pain, with a concurrent family history of endometriosis and personal history of atopic disease.” 

“Multiple studies have determined that endometriosis within the adolescent population requires different considerations for treatment as it present differently. Studies on the effects of surgical treatment for adolescents are insufficient, though the treatment may effective for pain reduction. There are few studies that emphasize that complete laparoscopic excision can significantly reduce the recurrence rates of endometriosis in adolescents (Yeung et al., 2017). The largest prospective study of adolescents with endometriosis did not find disease reoccurrence (diagnosed visually or histologically) after complete laparoscopic excision of the disease in teenagers at a repeat laparoscopy for pain (Tandoi et al., 2011). There is no consensus within the field that adjuvant medical treatments are necessary for all adolescent patients nor that long-term problems such as disease recurrence, infertility, or chronic pain may be prevented (Tandoi et al., 2011). The European Society for Human Reproduction and Embryology (ESHRE) has provided guidelines on treatment for clinicians, which include counseling women presenting with endometriosis associated symptoms (e.g. dyspareunia, infertility, CPP), as well as providing known successful treatments of these symptoms, such as hormonal contraceptives, even if the cause is unknown (Dunselman et al., 2014). This is partially due to the invasiveness of laparoscopic surgery, as well as the ease of prescribing hormonal contraceptives, and its dual purpose of preventing pregnancy. This empirical treatment is especially common in adolescents with pelvic pain and dysmenorrhea (Yeung et al., 2017). However, the ESHERA has noted that recommending treatment of the symptoms instead of surgery for young women presenting with endometriosis symptoms may cause longer delays in diagnosis (Dunselman et al., 2014). Approximately 80 % of adolescent girls with CPP not responding to conventional medical therapy have endometriosis (Yeung et al., 2017). As surgery is currently the main procedure for diagnosing, this may result in young women carrying the painful condition into adulthood. Additionally, it has been shown that using hormonal contraceptives in adolescents to treat of primary dysmenorrhea could be indicative of the diagnosis of deep endometriosis in later life (Chapron et al., 2011). The paradox of recommending empirical treatment to symptomatic adolescents might be perpetuating the significant delay in diagnosing endometriosis.”

  • Audebert, A., Lecointre, L., Afors, K., Koch, A., Wattiez, A., & Akladios, C. (2015). Adolescent endometriosis: report of a series of 55 cases with a focus on clinical presentation and long-term issues. Journal of minimally invasive gynecology, 22(5), 834-840. Retrieved from https://pubmed.ncbi.nlm.nih.gov/25850071/

“Adolescent endometriosis is not a rare condition. In our study a familial history was reported in more than one-third of patients. Among those patients treated for DIE, there was a trend for higher rates of recurrences (symptoms or lesions) that required repeat laparoscopy. However, the impact on subsequent fertility appeared to have been limited.”

  • Song, X. C., Yu, X., Luo, M., Yu, Q., & Zhu, L. (2020). Clinical characteristics and postoperative symptoms of adolescent endometriosis among 85 cases. Journal of Pediatric and Adolescent Gynecology. Retrieved from https://pubmed.ncbi.nlm.nih.gov/32619717/

“Pelvic pain was the main symptom in adolescent endometriosis and was greatly improved after surgery. It should also be noted that genital malformation may be an important factor in younger adolescent endometriosis.”

3 years ago Resources

Endometriosis affects absenteeism and presenteeism

Symptoms translates to less productivity:

  • Soliman, A. M., Coyne, K. S., Gries, K. S., Castelli-Haley, J., Snabes, M. C., & Surrey, E. S. (2017). The effect of endometriosis symptoms on absenteeism and presenteeism in the workplace and at home. Journal of managed care & specialty pharmacy, 23(7), 745-754. Retrieved from http://www.jmcp.org/doi/10.18553/jmcp.2017.23.7.745 

“Women who experienced 3 endometriosis symptoms concurrently lost a significantly greater number of employment hours because of absenteeism and presenteeism compared with those experiencing 1 or 2 symptoms (P < 0.001). Regression analyses showed that a range of endometriosis symptoms predicted employment and household losses because of presenteeism and absenteeism.”

3 years ago Resources

Lack of Surgery Reimbursement in the US

3 years ago Resources

Insurance: Tricare

We have a lot of members that have Tricare. Many of us have hit road blocks in getting good care. Here is what I have learned:

If you have Tricare Prime you will need a referral to see a Gynecologist for pelvic pain. If you are at a base that has a Gynecologist it will be harder to get expert care. Most likely you will have to make a case why the base doctor cannot help you. Complicated cases with bladder, bowel, and/or diaphragmatic involvement have a better chance for off base referral. If you have had multiple treatment failures you can advocate for yourself to go off base also. A patient advocate may be needed if your PCP continues to refer to base doctor. If you can get your off base referral change the doctor to the doctor of your choice. You have the right to see any doctor that accepts Tricare prime. You might have to sign a waiver stating you will cover your own travel expenses. If you take a chance and use the Gyn referral they give you and that Gyn says they can’t help you there is a remote chance they will also cover your travel to see a specialist. I personally wouldn’t chance it as many Gyns will say they can treat you when really they may have little clue. If you have Tricare Standard you can self refer. With Standard you will have a share of costs but there is a cap on it. Double check for exact amounts with tricare. We have several doctors on the list that accept tricare. I feel I am very fortunate to have tricare even if it takes a big fight sometimes to get what you need.

3 years ago Resources

Tips for Dealing with Insurance

Insurance policies are all different, so please be sure to check with your own policy documents in addition to using these tips.  Several patients have been successful in getting their insurance plans to cover out-of-network providers at in-network rates for HMOs, PPOs, state insurance plans, and others.  

Ablation and excision are often viewed as the same procedure by insurance companies. If their network includes surgeons who are able to provide ablation, then they may not understand the necessity of seeing an excision specialist.  Tackling this kind of insurance issue often requires that you demonstrate medical necessity of the procedure and professional competence of the surgeon.  Many surgeons try to perform excision, but aren’t skilled. You need to emphasize the importance of a skilled excision surgeon. 

Below are a few pieces of advice from members who have successfully appealed insurance company decisions and had in-network insurance coverage for their excision surgery. Here are the key points:

  • Understand YOUR policy – all insurance policies are different (even with the same carrier). BCBS for one employer may have different provisions than BCBS for another employer.   
  • Use your resources – the surgeon you want to see may be able to provide guidance for understanding insurance decisions and appealing those decisions.
  • Be your own advocate—become educated about why excision is best, why you need it, and why skilled excision specialists are your best option for a best outcome.
  • Quantify your points—insurance companies are profit based.  If you can demonstrate that one excision surgery has a high likelihood of eliminating the need for several more less effective surgeries in the future, your case will be stronger.
  • Build a case—utilize the free records reviews provided by many of the specialists.  After a specialist has reviewed your records, they can provide documentation for why excision is best for you.  
  • Be organized—keep a timeline of your appeal. Be sure to keep a copy of the letters submitted on your behalf by prior doctors and potential doctors and of any correspondence from the insurance company.  
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