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Endometriosis from Harm to Hope: A Chronic Illness Guide

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Endometriosis is an excruciating and invasive disease. It ravages a person, decimating our organs, fertility, and quality of life. It's so much more than "a bad period" or a reproductive disease. It can affect multiple systems in our bodies, including your digestive system, urinary system, endocrine system, nervous system, and immune system.

Endometriosis from Harm to Hope explains what endometriosis is, how to manage it, and while there is no cure, what your current treatment options are. Written by a mental health provider who dealt with her own endometriosis for decades, this guide does not gloss over the difficult mental toll of a chronic disease like endometriosis. Instead, it weaves in stories of patients who've been where you are and gives you the tools you need to advocate for yourself in the doctor's office, look after your mental health, and educate yourself, no matter where you are in your endometriosis journey.

Endometriosis has taken many things, but despite all it has robbed from us, we still have value. We still have strengths. We are worthy of love, dignity, and joy because we exist, despite our limited capabilities. We may not have complete control over what the disease takes from us, but through support, self-love, and self-care we can make sure it doesn't ravage every bit of us.

224 pages, Paperback

Published February 10, 2026

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Casey Berna

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Displaying 1 - 13 of 13 reviews
Profile Image for Michelle Martino.
Author 1 book6 followers
Review of advance copy
January 18, 2026
This book is true to its description: Casey helps the reader feel seen, even when her team of medical professionals doesn’t know how to support her with endometriosis.

The author goes in-depth into the symptoms, some prescribed remedies and options, and the mental toll it takes on someone with this health challenge. She explains how endo shares similar symptoms to other health-related complications, and how it can impact pregnancy.

As someone who has done hours of research and has seen multiple professionals (many of whom did not provide adequate support or believe me), I appreciate Casey’s honest perspective and way of addressing the many challenges that come with endo.

This book is a great way to learn more about endo. I would also recommend the reader look into cycle syncing and natural supplements to help symptoms.

I received an ARC book through NetGalley to review this title before it releases.
Profile Image for thebookaddict25.
407 reviews48 followers
Review of advance copy
January 22, 2026
This book is a powerful and deeply compassionate guide that finally tells the truth about endometriosis without watering it down. It makes it clear that this illness is not just about painful periods or reproductive health, but a full body condition that can affect nearly every system and quietly steal quality of life. Written in simple, clear language, the book helps readers truly understand what endometriosis is and why it is so often misunderstood, dismissed, or minimized.

What makes this guide stand out is how honestly it addresses both the physical and emotional sides of living with endometriosis. The author writes not just as a professional, but as someone who has lived through decades of pain, confusion, and medical struggle. Alongside practical information about management and treatment options, the book gently acknowledges grief, anger, burnout, and fear. The shared patient stories make you feel less alone, and the guidance on self advocacy gives readers confidence to speak up in doctor’s offices and demand better care.

Most of all, this book offers hope without false promises. It does not claim there is a cure, but it reminds readers that their lives still hold meaning, worth, and joy. It reinforces the idea that even when the body feels out of control, self compassion, support, and education can protect the parts of us that illness cannot take. This is not just a medical guide, but a validating companion for anyone walking the long and often lonely road of endometriosis.
Author 2 books139 followers
February 21, 2026
Endometriosis from harm to hope - a chronic illness guide by Casey Berna LCSW (‘Licensed Clinical Social Worker’) published by Sheldon Press, an imprint of John Murray Press this February (2026). Berna has endometriosis too and she describes her personal experience alongwith that of others in this book.

‘This book is dedicated to my brave and resilient daughter. May disease or illness never make you doubt your self-worth. May you never mistake your lack of capacity for a lack of competence. May you always believe your lived experiences. May you never suffer fools who invalidate you. May you always feel loved.’ Casey Berna [2%]

My review of this book posted on Youtube: https://youtu.be/C-CpxeBsdjU

ENDOMETRIOSIS & PAKISTANI WOMEN:
“In Pakistan, the estimated prevalence of endometriosis is 16.8%” According to an article published in Journal of Gynecology Obstetrics and Human Reproduction (Volume 50, issue number 9, November 2021, co-authored by Mohammad Hasan Raza Raja, Nida Farooqui, Dr Nadeem Zuberi, Mussarrat Ashraf, Dr Arfa Azhar, Rozeena Baig, Bisma Badar, and Dr Rehana Rehman). - this of course is as per reported data - because most of endometrial patients are silent sufferers.

For e.g. a symposium “Endometriosis: a conversation to accelerate action on helping women who are suffering in silence” was held at Capital Hospital Islamabad in March last year (2025) A news report on it was published in Dawn March 10, 2025. It quoted Capital Hospital’s Executive Director Dr Mohammad Naeem Taj as saying that: “About one in four women undergoing laparoscopic procedures is diagnosed with endometriosis.” Dr Taj, a leading laparoscopic surgeon of Pakistan, underscored the significant yet often overlooked prevalence of endometriosis in Pakistan. He also pointed out that the disease remained poorly understood and inadequately addressed due to a number of factors including insufficient medical knowledge, limited public awareness, inadequate research funding and societal taboos surrounding women’s reproductive health.

In her keynote address, Prof Dr Syeda Batool Mazhar stressed the importance of early diagnosis and personalized management tailored to individual fertility desires and pain severity. She also stressed the positive impact of lifestyle modifications and advocated for accelerated programs focused on women’s rights and empowerment, particularly in health-related matters, to ensure informed decision-making in disease management. Dr Sheeba Noreen, head of the Department of Obstetrics and Gynaecology at Capital Hospital, addressed the diagnostic delays caused by societal stigma surrounding menstruation. Dr Hadia Aziz, Associate Gynecologist, highlighted the societal invisibility of endometriosis sufferers which denied them adequate healthcare and recognition of their pain. She emphasised the state’s moral and political obligation to acknowledge their suffering and provide essential resources.”

GLOBAL / U.S. STATISTICS ON ENDOMETRIOSIS:
So the experience of Pakistani women is not that different from those in rest of the world. According to the non-profit Endometriosis Foundation of America, Endometriosis affects an estimated 200 million women worldwide and approximately one in 10 women in the U.S. (that would be 6.5 to 9 million women btw in America alone) Office on Women’s health, part of U..S Department o9f Health & Human Services, quotes a study to give statistics on how prevalent this chronic disease is: ‘It may affect more than 11% of American women between 15 and 44.1’ [’Incidence of endometriosis by study population and diagnostic method: the ENDO study’.] World Health Organization quotes similar stats: that it ‘affects an estimated 10% (190 million) of reproductive age women worldwide.’ [15 Oct. 2025]

DELAY IN DIAGNOSIS:
What is important to remember is that on average, there is a 7-10-year delay in diagnosis [as per EndoFund website.] That’s a hell of a long time to be unwell and unsure and scared. And there are plenty of books in the market on this subject in all kinds of languages. It’s always good to consult your local health care worker, General Physician, gynecologist, reproductive endocrinologist, functional medicine expert or nutritionist, too. I’m sure plenty of listeners are interested in finding as much info about it as possible and in this regard, the book by Casey Berna will comfort an affectee and enhance the possibilities of cure or manage the symptoms.

NOT A GYNECOLOGICAL SUBSPECIALTY:
She makes it a point to mention that ‘endometriosis is not a gynecological subspecialty’ [pg.25] and how ‘most of the health care providers do not learn much about it in medical school’ [page 24] - now this is something that is very important in relation to Pakistan, where the only recourse available to women is a gynecologist referral, no specialist or general physician is recommended or answers your questions. You’ll have to go to a gynecologist and get yourself tested and they will give whatever medication they think is good for you to reduce or eliminate the endometrial cyst. So even if you are single, unmarried, virgin or non-sexually active, you still have to sit in a labor room / waiting area with married women who are either in some month of pregnancy or are trying to get pregnant. The gynecologist surgeon whose speciality is maternal and fetal / baby care before and after pregnancy, not endometriosis, will have 5 minutes to do an ultrasound on your ovaries / pelvic region basically or abdomen or breasts to check for endometrial tissue - and you are only getting it checked on the advisement / direction of a general physician, since the GP has no such expertise or facility. Some gynecologists have their own fertility centres or IVF treatment facilities and they are laser focussed on profits off the baby-making machine. The clinic will be extremely crowded with no privacy and the doctor will simply have no time to discuss your ‘symptoms’ or anxieties or queries. They have scores of clients waiting. Fee for consultation 3-5K. Ultrasound: 4-7K per area. Blood tests: 500 rupees - 20K (if hormone indicators are also tested). Medicines: 3K-plus per month, which may or may not reduce pain, make you bloated, depressed or fat. The OB/GYN surgery on ovaries to remove cyst or endometrial tissue may render you infertile completely - a risky gamble of a surgery.
Now Berna in this book differentiates between a general OB/GYN doctor (who monitors pregnancies and deliver babies) and a gynecological oncologist who screens and treats cancer patients. However, there is no multidisciplinary specialist for endometriosis.

She says that American doctors usually rely on the Management of Endometriosis Practice Bulletin by American College of Obstetricians & Gynecologists (ACOG) to diagnose and treat it. [page 26] Btw, the ACOG recommends that if pain is severe and does not go away even after treatment, then a hysterectomy i.e. removal of ovaries may be done. [https://www.acog.org/womens-health/fa... ] In fact, Berna says that “so much of the research surrounding endometriosis and treatment for the disease are based on stopping menstruation, or dramatically reducing estrogen levels inducing menopause-like symptoms, or surgically removing our ovaries and/or uterus to treat the disease. We are told time and again that if we can make it to menopause we will feel better. Some of us are even encouraged to go through surgically induced menopause to be able to find relief from all of our endometriosis symptoms. Some people do feel better once they are in menopause. I often wonder how many of these people also had adenomyosis or other uterine-based conditions that did get better after menstruation stopped. We know that endometriosis, adhesions, fibrosis and inflammation exist in menopausal patients.” [pg. 60]

INFERTILITY:
There are a lot of myths around this disease. The most important thing to remember is that not everyone with endometriosis is infertile, as Casey Berna notes on pg. 43. The American Society of Reproductive Medicine estimates that 30-50% of women with endometriosis suffer from infertility and 25-50% of women with infertility have endometriosis….but there are multiple factors that contribute to infertility in endometriosis patients and she goes on to describe all of them [pages 43-44]

DEFINITION:
Even though endometriosis is normally discussed in relation to reduced fertility, Casey Berna defines it as “a systemic inflammatory disease that can impact nearly every organ in the body. By definition, endometriosis is the presence of endometriotic lesions (or tissues) found in various locations outside of the uterus. These lesions are similar in nature to the tissue that lines the uterus, except endometriotic lesions create their own estrogen and stimulate the release of excess prostaglandins [which are hormone-like lipid/fatty compounds], often inciting an inflammatory response from our own body’s immune system. The inflammatory response is our body’s way of trying to heal, yet the body is not able to eradicate the lesions. Pain, inflammation, organ dysfunctions, fibrosis, and adhesions commonly develop wherever endometriosis exists and also contributes to systemic inflammation throughout the body.” [pgs 1-2]

She calls it ‘an unwelcome intruder in the body,’ ‘an excruciating and invasive disease that impacts 1 in 10 individuals assigned female at birth, and loess commonly has been found in cisgender males.’ [pg. 2]

Page 4: “While endometriosis can impact fertility and sexual health, it is far from the only thing. It can impact the ten other systems in the body including _____” [she lists down the other body organs]

She says it’s not simply a hormone imbalance, that it’s not a curable disease, that it’s not just a white woman’s disease or caused by sexual trauma, but most importantly she writes, endometriosis is not just ‘in the patients head’ as women sufferers are so often brushed aside on this pretext. [pages 4-5]

SYMPTOMS:
Right at the beginning [page 1], Casey Berna quotes a 26 year old woman’s symptoms as following - you’ll find real case studies and views of actual sufferers in this book: And another one aged 16 who is quoted on page 8, etc.

She goes on to lay out the all-encompassing and diverse set of things a person feels when they have endometriosis on pages 7-8]. And says on page 10 that “in our thirties and forties, (health care) providers more readily recognize endometriosis if we are white and struggling with infertility. But by then, the disease has been thriving in our bodies for decades.” [pg. 10]

MULTIDISCIPLINARY TREATMENT:
On pages 17-31 she gives multidisciplinary options available to affectees. She starts by naming the types and side effects or drawbacks of all medications that may be prescribed to an affectee: for e.g. the NSAIDS (nonsteroidal anti-inflammatory drugs), the combined hormonal contraceptives, progesterone and progestins, GnRH agonists (which put you in a menopause-like state) and GnRH antagonists (drugs with significant side effects to the individual and their fetus), surgical treatment options available (for removal / excision of endometriosis) which according to Berna, may include a team of a general surgeon, a colorectal surgeon, a urologist and sometimes a cardiothoracic surgeon, while majority of OB/Gyns cauterize or burn the surface of the endometriotic lesions, called the ablation technique. [pages 21-22]. Even after doing all this, there is no guarantee that these options will reduce the symptoms and or reduce the chance of the disease progression to other parts of the body. But she recommends pelvic floor therapists and mental health practitioners, pain management specialists, acupuncturists, nutritionists and functional medicine practitioners for a truly multidisciplinary care for endometriosis. [pg.23]

On pages 65- 90 she discusses the possibility of other chronic health issues simultaneously with endometriosis and challenges in their proper diagnosis and treatment such as adenomyosis, uterine fibroids, interstilial cystitis female bladder pain syndrome, polycystic ovary syndrome, fibromyalgia syndrome, myalgic encephalomyelitis / chronic fatigue syndrome, hypermobile Ehlers-Danlos Syndrome, postural orthostatic tachycardia syndrome, mast cell activation syndrome, even long COVID. Autoimmune disorders like lupus, rheumatoid arthritis, celiac disease, Multiple sclerosis, inflammatory bowel disease, addison’s disease, sjorgens disease, hashimotos thyroiditis etc. can also co-exist at the same time as and overlapping endometriosis. You’ll see that the symptoms of these syndromes and disorders mirror those of endometriosis with fatigue, pain, and gastrointestinal issues recurring theme. From pages 91-183, she goes on to talk about the toll all of this takes on mental health. A huge range of medical trauma is discussed. The needs of such an individual on a personal, familial, societal and advocacy level are pointed out.

SUPPORT PROTOCOL FOR ALL PROVIDERS:
Health care professionals can review the support protocol she wants them to follow given as Appendix A on page 185- 188.

So all in all, this book provides a summary of the multitude of issues surrounding the subject of endometriosis and it will be helpful to anyone who wants quick, easy to read info on all basic aspects of the disease to better prepare on what to expect from one’s own self and others.

Thanks to the publisher for the ARC. All the best to the author in her health journey.

LINK TO REVIEW ON YOUTUBE: https://youtu.be/C-CpxeBsdjU
Profile Image for Skirmantė.
203 reviews18 followers
April 4, 2026
As someone living with endometriosis, I often look for books that help me understand it better. This book is very informative and well structured. It does a great job explaining what endometriosis really is and how it affects the whole body, not just the reproductive system. I also appreciated how it connects different symptoms and health issues that are often overlooked or misunderstood.

Thanks to NetGalley for providing me with an e-ARC in exchange for an honest review!
Profile Image for Ari.
9 reviews
Review of advance copy received from Publisher
February 2, 2026
​*Review of advance copy received​ as a content expert for Our Bodies Ourselves*
This guide is thoughtful and comprehensive. Casey Be​rna writes as if she's explaining endometriosis to a friend. She weaved in her personal experiences with supporting research. The Guide addressed endometriosis from many angles and was easy to understand. I truly appreciated the feminist and social justice lenses -- addressing inequities head on throughout the book. I really loved the vignettes from other patients as well.
Casey also captures so much of the endometriosis experience from youth through menopause. This book was jam-packed with a wealth of information and was still a relatable quick read.
I was brought to tears while reading and realizing that my experiences were not isolated. Casey reminded me that I am a part of a larger community with diverse and overlapping experiences.
Well done! I will recommend this to anyone who wants to learn more about endometriosis and its impacts on patients.
1 review1 follower
Review of advance copy received from Author
February 3, 2026
It truly painted a complete picture of endometriosis and how everyone’s journey is different, for better and for worse. No one plan towards treatment and diagnosis will work for everyone, but the basics still stand true…. We need healthcare providers who support us, doctors who aren’t afraid to say they need to learn more instead of gaslighting, and a society that does not measure success by how busy you are but supports mental health, taking breaks, and listening to one’s body.

Thank you for writing this book. It is the perfect book for the endometriosis patient struggling to express what they’re feeling, but also full of information for medical provider, and/or support system looking to learn more.
Profile Image for Ashley Harzog.
58 reviews
February 15, 2026
Everyone who is on an endo journey or loves someone with endo needs to read this book.

This was a solid 4/4.5 star read and one of the most thoroughly researched and holistic, comprehensive guides I’ve encountered. In an information system just overflowing with ‘wellness’ grifters and shame, Berna’s perspective is grounded in reality, evidence, and compassion.

While there is hope, I think the hope prescription at the end did leave a little to be desired and at points the book could be repetitive.

Overall, it’s an excellent, validating, and accurate guide that I’d recommend to anyone who wants or needs to learn more about endo.
149 reviews
March 20, 2026
As an endometriosis warrior I really wanted to like this book, chapter 1 started off well but than as the chapters progressed I struggled as it felt like I was reading a text book and I was confused as to who the target audience was as sometimes it felt aimed at those with endo and other times it felt aimed at medical providers.

I was diagnosed with endo, via surgery, in my early 40s and since than I have tried to educate myself but found the comorbidities chapter overwhelming and too list focused, I’m not sure what a newly diagnosed person would think but that chapter was ALOT.

Maybe this book would be better aimed at medical professionals trying to learn more about endometriosis.

Unfortunately for me I don’t feel very hopeful after reading.

Thank you Netgallery and John Murray Press for the opportunity to read and review this book.
Profile Image for Mary.
56 reviews
March 8, 2026
With thanks to Netgalley for the book arc in exchange for an honest review.

Practical, validating and empowering. This book provides factual and up to date information on the signs of endometriosis, co occurring conditions and treatment options.

It also goes beyond fact sharing and discusses the real social barriers to diagnosis and treatment and the mental and physical implications of delayed diagnosis and treatment. Casey rightly describes this as a social justice issue and I’m inclined to agree. The issue of medical gaslighting is pervasive and the burden on women in particular to research and advocate for their health is a serious and inexcusable barrier to healthcare. I found this book realistic and hopeful, despite the bleak state of affairs. The anecdotes and examples shared also highlight the real stories and impact.
Profile Image for Courtney.
290 reviews
April 13, 2026
After being newly diagnosed with Endometriosis, it was hard to comprehend what is was. You are given like two sheets of paper to briefly explain then left to discover and this book went into more depth i think i could take in and will be going back to it when i need a refresher. So many other conditions that can overlap or seem like Endo.
Very informative book.
Profile Image for Hana Vigil.
5 reviews1 follower
Review of advance copy received from Netgalley
January 16, 2026
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I found this to be extremely informative. I really appreciated the opportunity to read it early, as a sufferer of endometriosis. I love that it sheds light on a major issue for women.
Profile Image for bella c.
49 reviews
April 28, 2026
The most thoughtful, well-researched, detailed & valid book I've read on this complex illness. Casey Berna is leaving such a beautiful impact in the world, especially in the endometriosis community. I wish I read this book first when it was suspected I had this before surgery. I would have felt much more prepared and switched doctors sooner
Profile Image for Carol G. Golden.
14 reviews
April 18, 2026
All good information and easy to understand. The author really knows how endometriosis affects people in different ways.
Displaying 1 - 13 of 13 reviews