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Endometriosis: A Guide for Girls

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Endometriosis is a physically and mentally debilitating disease that has tortured women for centuries. It currently affects 176 million women of childbearing age worldwide, including one in ten in the US. Despite those startling statistics, this horrific and incurable ailment is still relatively unknown to the general population and medical professionals alike. Symptoms of heavy periods and excruciating pain most often begin in middle school or high school, yet doctors take an average of twelve years to diagnose it in a patient. As a result, these undiagnosed and misdiagnosed women suffer into at least their mid-twenties or early thirties, repeatedly told that the pain is in their minds, that it’s simply part of becoming a woman, or that it’s caused by some other disease or condition. That nonsense must stop, and it must stop now! This guide will explain what endo is in terms that adolescents can understand, along with potential remedies, treatments to avoid, and how to manage the psychological and social effects of the disease. It will also include riveting stories from women in their teens and mid-twenties, and from those closest to them such as mothers, fathers, teachers, and coaches. One of the most terrifying aspects of having endo is feeling like nobody believes the pain is real or severe, which can cause a woman to feel scared, isolated, and depressed. This guide will fully arm her with the truth and knowledge about the disease so that she can overcome her fears and confidently advocate for herself. If her cry for help has been dismissed by anyone, she will be able to educate them so that they can empathize with her and fully support her in her quest for healing.

208 pages, Hardcover

Published March 17, 2020

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93 people want to read

About the author

Tamer Seckin

2 books9 followers
Tamer Seckin, MD, is a Board Certified gynecologist and laparoscopic surgeon in private practice in New York City, practicing at North Shore LIJ/Lenox Hill Hospital. He specializes in treating women with endometriosis. He is an internationally known specialist in minimally invasive advanced (laparoscopic) surgery, and is among a very limited number of gynecologic surgeons in the United States who is exclusively committed to the Deep Laparoscopic Excision of endometriosis.

In 2009, Dr. Seckin founded the Endometriosis Foundation of America (EFA) with Padma Lakshmi. This was the first research and advocacy foundation of its kind organized by a private physician to raise awareness and emphasize the critical value of surgical excision of endometriosis. Under his guidance as Medical Director, the EFA strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.

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Displaying 1 - 24 of 24 reviews
Profile Image for Coleman.
337 reviews19 followers
August 28, 2020
Endometriosis: A Guide for Girls is a slim volume packed with information and first-hand accounts about endometriosis (or endo for short), all geared towards a teen audience. I picked it up because my partner is 99% certain she has the disease, and when I saw it on the shelf I figured it might be helpful for her. Turns out, it was much more helpful for me. Beyond learning about the disease, its symptoms and treatments, I learned so much more about women’s health and our culture towards it than maybe any other book I have ever read. Let me try to explain why.

I said my partner is “99% certain” she has endo because she has never been officially diagnosed. This is for two reasons. First, endo is a disease characterized by endometrium-like tissue that is present outside of a person’s uterine cavity (Normally this tissue only lines the interior the uterine cavity). This tissue initiates an inflammatory process within the body where the body’s immune system will try to fight this tissue that isn’t where it is supposed to be. The result of the battle between the immune system and the endometrium-like tissue results in inflammation, scar tissue, and excruciating pain for the person infected (4-6). I explain all this because that resulting scar tissue is the only evidence that someone might have endometriosis. And that scar tissue can only be confirmed as endo tissue if it is removed via surgery and sent to a lab for analysis. Endo cannot be diagnosed through cat scans, x-rays, or a simple explanation of symptoms.

And those symptoms are brutal. Debilitating pain, digestive and bowel issues, painful and nausea-inducing periods are just a few of the personal hells people with endo often go through, yet these symptoms are not usually enough to convince a doctor. The second reason my partner has not been diagnosed, and the reason many people have not been diagnosed, is because when they tell professionals that they think they have endo, they simply aren’t believed.

Endo is a disease that affects 10% of women in the United States (36). If my math is correct that’s over 16 million people, and yet it is probably one of the most misdiagnosed diseases in the country, if not the world. “Because endometriosis is not a household name like cancer or diabetes, and because doctors still aren’t required to learn about it in medical school, it takes an average of twelve years to diagnose” (xv). A debilitating disease that affects 10% of women is not a medical school requirement, not even for gynecologists! (31) So when people discuss these horrible symptoms with their doctors, those doctors will diagnose just about every condition other than endo, give them treatment for every condition other than endo, and as a result the pain continues. But it goes beyond that.

The book has first-hand accounts from women and teens talking about how their teachers and parents and even their friends didn’t believe them when they said they were in pain. They were told to toughen up, told that painful periods were just part of being a woman, or told to just shut up about such a taboo subject. It boggles my mind that in 2020 (the book was published just last year) women’s health issues are so unfitting to discuss that doctors aren’t even required to learn about them. I’m sure for any woman reading this it isn’t mind-boggling at all. This is just one example of how America is still mentally stuck in the 50s.

If you know anyone who has endo, I highly recommend this book. Beyond information about endo itself, it addresses parents, teachers, partners, and friends of people with endo. It talks about what you should know and how you can help. Even if you don’t know someone with this awful disease I still recommend it (especially if you’re a doctor). Awareness of endo is the first step towards helping the people most affected by it.
Profile Image for Mikayla Patel.
190 reviews2 followers
March 21, 2024
Wow, do I have some thoughts about this book. When I first started reading, I thought it was wonderful. As someone who wasn’t diagnosed with endometriosis until after college, I remember having the thought “this is the book I wish I had when I was growing up”. It starts out by providing general information about periods and endometriosis, intertwined with real patient stories. However, as the book went on, I definitely got a very weird “cultish” vibe. I have concerns with the medical legitimacy of some of the claims that are promoted and the way that various doctors are demonized. I certainly wasn’t diagnosed right away and struggled for years, but I also don’t have the perception that the physicians I saw were malicious or incompetent. Endometriosis can be very difficult to diagnose because it CAN be normal to have some cramping with periods and you often can’t appreciate lesions on exam/imaging, making surgery the only way to definitively diagnose. Nearly all of the patient stories bash the doctors they’ve seen, all while praising Dr. Seckin. The book makes it seem like the standardized treatments of endometriosis used by OB/GYN’s across the country are all incorrect, and that the only ‘true’ treatment is the one that Dr. Seckin provides. Because I have some amount of medical experience, it’s easy to see all the ways in which this book was outrageous (as minor examples: ER doctors performing appendectomies and OB/GYNs doing colonoscopies). It makes me nervous that a lot of these things could be perceived as true and read by women who have been suffering for years and are desperate for an answer.

Overall, I had such high hopes for this book and initially felt very seen (bumping my rating up from a 1 ⭐️), but finished feeling very frustrated and annoyed.
Profile Image for Holly.
521 reviews30 followers
January 26, 2020
I genuinely had no clue what endo was until I read this book for collection development as a youth librarian who orders for the 600s. I always was under the impression it was just a synonym for "really, really fucking terrible period." I recommend this book in all public libraries and in childrens nonfiction, not just teen. Why? Cause all these stories start when the girls are 11 or 12...so....not teenagers but children.

This book would be immensely helpful to a girl with endo but I think it would just be helpful in general to anyone young. Literally no one tells girls a single thing about what a normal period is ever in their entire lifetimes. This book lays it out.
Profile Image for Kira.
3 reviews1 follower
July 24, 2022
Cons- contains misinformation about what the disease is and how it is caused. The author (a doctor) include too much of her own opinion in the book rather than peer reviewed information. No evidence exists that doctors can agree on about the cause of endometriosis. While she states it is her opinion that retrograde menstruation causes endo, that is not a fact. However, readers may think it is. This book will be in the hands of folks who are just learning about the disease and they deserve an honest preview of all the possible causes of endo that exist, not one doctors belief (without any sources to back her up listed in the book). This book also states endometriosis is only found in women/girls, which is false and excludes a large population of people with endo who are not women.

Pros- only reason this book gets two stars is because the honest stories of folks who have had endo. I wish I had these stories when I was young, maybe I wouldn’t not have felt so alone. I resonated with so many of their stories. I also appreciate the author highlighting that excision laparoscopy surgery is the gold standard. The section at the end about how different people in a persons life can support people with endometriosis is touching and important.
Profile Image for madz.
112 reviews1 follower
January 12, 2024
This book caught my eye at the library today and I’m so glad I picked it up! This guide contains a collection of true stories from women about their endometriosis journey, in particular their longstanding difficulties obtaining a correct diagnosis, and also speaking to the treatment options they were given. It also includes information and stories from Dr Tamer Seckin, Endometriosis Surgeon.

This is a really fantastic book that I would (and will) recommend to any young women or people connected to young people with endometriosis and/or period pain.

It’s really easy to read and quite short (~180 pages) - I read it in about an hour or so. The stories and advice feel like they’re coming from a big sister!

I would also recommend this to anyone wanting to gain insight into endometriosis, particularly how it impacts on adolescents. I chose this because I have quite a few female clients, as well as friends, colleagues, who have endometriosis and I wanted to arm myself with more information about women’s lived experiences.
Profile Image for Sarrah.
27 reviews
June 5, 2021
This book needs to be required reading in all high schools. It's a great introduction to endometriosis that is well written, easy to read and understand.

Reading the endo stories in this book confirms how imperative it is that people know about and understand this disease, and that periods and reproductive health needs to move away from being such a taboo topic.

I was diagnosed back in 2016 and after reading quite a few books on endometriosis, I have to say... I've always learned something after each read and I always feel less alone after I close the book.

Now I'm tempted to go buy a copy of this for every single person in my family and force them to read it 😎
Profile Image for Ashley Brown.
39 reviews2 followers
July 29, 2025
Really informative book on endometriosis. Referred to me by a friend who suffers with the disease. Continuing to lean in. I want to be a student, committed to learning more about my body as I fight chronic pain & seek relevant answers.
Profile Image for Catherine.
496 reviews15 followers
April 11, 2021
I listened to this today while working on my art homework. This was written by an Endometriosis specialist. I really appreciated how straightforward it was--and that it highlighted what treatments for Endo can work the best as well as how to manage the pain. Something I wish I had read years ago.
Profile Image for Emily.
367 reviews29 followers
May 5, 2022
-"Because endometriosis is not a household name like cancer or diabetes, and because doctors /i/ still /i/ aren't required to learn about it in medical school, it takes an average of twelve years to diagnosis.
-1 in 10 people with a uterus have it
-Endometriosis is when tissue grows outside of the uterus
-combine that with normal menstrual blood and you get inflammation and pain
-the endometrial tissue grows from the fluctuations of estrogen and progesterone that you experience throughout the month, so it continues to spread out. Can spread and cling to the "appendix, rectum, ovaries, leg nerves, outside of the uterus, and in some rare cases the diaphragm, lungs, kidneys, or brain." All of this extra tissue can lead to "adhesions, scarring, internal bleeding, bowel or urinary dysfunction, constipation, painful intercourse, and infertility." Not to mention the mental strain of having a chronic health condition.
-Great accounts from people with endo
-As your uterus contracts to expel that tissue, it causes cramps, a normal symptom of having your period. (paragraph break) But there is a /i/ huge /i/ difference between cramps and abnormal, crippling pain." (paragraph break) It's normal for most girls having their periods to feel cramps and some discomfort. It's not normal when that pain has you doubled over to the point that you can't get out of bed or walk. It's not normal when the pain is so intense that you are vomiting or it hurts to have a bowel movement. It's not normal when you can't go to school or work because you can physically cannot get there and function. This is when adults need to listen to you and believe you. Telling you to "suck it up" or that "it's part of womanhood" is insulting and scientifically incorrect. It's why many girls with this disease seek isolation and try to suppress their pain. If you have endo, an extended delay in addressing your pain could allow the disease to grow and spread throughout your body. That could lead to more complications as you get older, including infertility."
-"/i/ Maybe I'm as weak as they say I am, /i/ I wondered. /i/ Maybe I'm exaggerating. /i/ What happens to so many girls with this disease was happening to me: I was beginning to believe others and doubt my reality."
-quote from one of the accounts
-"Aside from painful periods, symptoms of endo that you may experience may include abdominal queasiness, nausea, vomiting, diarrhea, heavy bleeding, killer cramps, painful sex, painful bowel movements, neuropathy, miscarriages, infertility, and fatigue."
-IBS is a common misdiagnosis
-Canker sores - symptom?
-www.endofound.org - "Personal Pain Profile: Daily Symptom Tracker"
-the importance of knowing your family history
-laproscopic deep-excision surgery is the gold standard of treatment
-LASER SURGERY NOT RECOMMENDED
-Cautery and ablation
-Tip of the iceberg problem solving, can cause painful scar tissue
-health education is ESSENTIAL for early diagnosis and treatment
-"And when they tell a fifth-grade girl that cramping during her period is a normal part of her period, that's fine, but they also need to explain that there is a threshold; too much pain is not normal. Though they probably don't know to tell her that because they have no idea what endo is or what it can do to a girl. And they don't know that because nobody will talk about a girl's period like they should. It's a vicious cycle that has to stop."
-patient account
-"The pill will not make your endo disappear or stop it from spreading. What it can do is shrink an ovarian cyst or slow down the endo's growth process (because the pill would reduce the amount of estrogen produced in your body.)"
-Doesn't really address the root problem
-Helps w pain though
-Steps for determining if you have endo: clinical exam, sonogram or MRI, inspect tissue under microscope
-Opioid addiction and doctor's role in it in regards to endo treatment
-overprescribing to cover up pain
-Avoid Lupron which is a drug to put you into early menopause (and stop your period)
932 reviews4 followers
January 3, 2023
Ik heb manlief verplicht om mee te luisteren naar dit audioboek, tussen het maken van een afspraak met -eindelijk- een endo specialist en de excision surgery die ingepland werd tijdens die korte eerste consultatie, omdat wat ik beschreef volgens de arts heel duidelijk op endo wees. En dankzij die operatie werd 26 jaar na de eerste keer dat ik mijn regels had -meteen ook de eerste keer dat ik op school overgaf van de pijn, september van mijn eerste middelbaar was een bitch- eindelijk vastgesteld dat ik endometriose en adenomiose heb. Nu ben ik 4 littekens rijker en weet ik dat mijn buikholte vol littekenweefsel zit, want “there must have been times that it was a lot worse than now”.

Ondanks de vele keren dat een gynaecoloog me verzekerde dat alles er perfect uit zag en er vast niks speciaal was aan de maandelijkse helse pijn, a.k.a. gij teerzierige vrouw of hypochonder. Ondanks de huisartsen die, achteraf gezien, hun endo checklijsten overliepen en besloten dat een vruchtbaar persoon voor wie seks niet pijnlijk is geen endo kan hebben, a.k.a je hebt de meest voorkomende symptomen niet, dus we zien het niet meer als een optie. De getuigenissen van vrouwen die niet geloofd werden, waren véél te herkenbaar.

Ik was het niet eens met alles wat in het boek aan bod kwam, maar het was een goede crash cursus voor manlief.
Profile Image for Morgan Dehmel.
7 reviews
June 1, 2023
I stumbled across this book at the public library in the women’s health section - desperate to find answers to my current health struggles (and living within the constraints of the Canadian Healthcare system and extensive wait times for appointments). Hearing the personal struggles the women with endo in this book experienced felt too familiar to my situation. Even though I’m not diagnosed, this book helped me
feel informed enough to ask about endometriosis in my next gynaecology appointment ❤️ thank you to the women featured in this book and their encouraging words.

This book would be appropriate for young teens seeking help for their painful periods, etc, as it’s written in lay-man’s language, as if you’re getting advice from a friend, auntie or older cousin. A speedy, digestibly informative read ☺️
Profile Image for Pren Clair.
498 reviews3 followers
May 11, 2021
Man. This book was hard for me to read in parts. The fact that girls are still being met with the same ignorant lack of knowledge and disbelief that I was met with 30 years ago fills me with rage. This book was full of great information on everything from symptoms, to diagnosis, to treatments. It has a lot of personal stories that I am sure other endometriosis sufferers can relate to. It even has a section for how you can help someone you love who has endometriosis. Chances are you know someone. 1/10 women suffer from this condition and I wish this book would have been around for me in my teens.
Profile Image for Michaela.
425 reviews8 followers
February 5, 2022
Very informative, but because it’s written by the one doctor who developed this seemingly miraculous surgery, it kind of seems to toot his horn pretty frequently, when I feel that may be better done in a separate section or an about the author feature rather than throughout. Also, all of the testimonies are written syntactically very similarly, so it makes me question how much of it is authentic from these patience or how edited or even ghost written those parts were. I feel like they’re genuine testimonies, but I would have preferred a more personal style if that was possible, even if it takes away from the “consistency” of the book.
Profile Image for Emma.
4 reviews
February 7, 2024
As a teenager, I enjoyed this reading. Now, I read on a higher level than this was written, but the simplicity of the writing makes it digestible enough for young girls still teetering on teen-hood who may have this condition. (Not to mention how many girls are not educated about their bodies and reproductive systems, especially where I live). Quite frankly, I had done my research, and little of this information was new. I loved hearing stories about other girls around my age struggling with some of the same things as me though. Dr. Seckin is very firm in his beliefs, which may sway young girls away from further research.
Profile Image for Amy N..
438 reviews5 followers
Read
June 17, 2020
The author doesn't just tell the reader the facts about endometriosis, he teaches girls and women about their periods from start to finish, and gives them the confidence and tools to self-advocate in a medical system where their pain is often discounted by doctors who are almost as ignorant as they are. As someone who probably has endometriosis, and who knows people that definitely do, people need to be better educated about this disease, which is not only more common than people think, but is treatable!
Profile Image for Marlana.
25 reviews
April 28, 2022
This book is amazing! It is so informative, yet does so in an east-to-understand manner. I like how there are two viewpoints to each chapter - the medical and the personal. This subject should be required material in all levels of schooling and I truly hope that our education system progresses to include it. I hope more doctors and medical professionals take the time to read this book and to learn more. We always have an opportunity and a responsibility to learn more and to do more.
Profile Image for Ferhat Elmas.
901 reviews29 followers
October 4, 2020
A light reading but still very informative for an introduction. It's also many anecdotes from real patients which makes whole reading heartwarming.
41 reviews
October 24, 2020
Very informative - geared toward a younger demographic but still helpful information to all.
Profile Image for JL Salty.
2,033 reviews1 follower
December 13, 2020
Skimmed.
But appreciated the forthright and informative tone of this book. I also liked the back-and-forth with the dr. And the endometriosis sufferers.
Profile Image for Amy.
2,287 reviews13 followers
January 27, 2022
A book that encourages girls and young women to advocate for themselves, for their families to believe and take part in advocating for their health and right to be believed and not in pain so much!
Profile Image for Emma underwood.
17 reviews
July 4, 2025
Loved this book overall but rated 3 stars because I did not like that they encouraged teen girls to go get birth control behind their parents back 🙄
Profile Image for Ricca.
22 reviews2 followers
November 19, 2024
Viele gute Informationen, aber auch viel zu viele Anekdoten aus dem Leben des Autors (der sich nebenbei auch wirklich sehr oft selbst lobt und als den besten Arzt überhaupt darstellt).
Profile Image for Samantha Coffin.
12 reviews1 follower
January 31, 2021
I cried + read this book in a day. This book feels like it was written for me 10 year old self. It is amazing! Read this especially if you have no idea what endo is.
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