Endometriosis Quotes

When all you know is pain you don’t know that that is not normal. It is not a woman’s lot to suffer, even if we’ve been raised that way. It is not OK to miss a part of your life because of pain and excessive bleeding. It is not OK to be bed-ridden for two-to-three days a month. It is not OK to pain during sex. It is not OK to have major bloating or nausea." (Address, 2011 Endometriosis Foundation of America Blossom Ball)

Suffering should not define you as a woman! And just because you’re a man it doesn’t mean that it doesn’t affect you! HELP HER to remove the taboos and the loneliness surrounding this disease; be understanding, show empathy, and don’t accuse her of being sensitive, delicate, or overly dramatic – this is a big opportunity for you guys to show that you care and to be a real man!" (Address, 2011 Endometriosis Foundation of America Blossom Ball)

But I had to think to myself that this was normal, because that was the attitude. I was 19 when I went to see my doctor and I was told it was all in the mind.

Again, women who experienced childhood trauma are 80 percent more likely to experience painful endometriosis.[4] They’re much more likely to develop premenstrual dysphoric disorder. More likely to develop fibroids.[5] It may affect fertility.[6] They’re at greater risk for postpartum depression[7] and depression in menopause.[8]

It's not easy to diagnose because depending where the endometrial deposits are, the symptoms can be quite different. It's an unrecognized problem among teenage girls, and it's something that every young woman who has painful menstruation should be aware of ... it's a condition that is curable if it's caught early. If not, if it's allowed to run on, it can cause infertility, and it can really mess up your life. [Author Hilary Mantel on being asked about being a writer with endometriosis, Nov 2012 NPR interview]

It is not easy to talk about a condition once dismissed as ‘the career women’s disease’. But women will continue to suffer until we realise the cost of ignoring it

One 1993 study suggested that up to 40 percent of black women with endometriosis were misdiagnosed as having sexually transmitted PID. "It was so blatantly racist it just blows my mind," Ballweg says.

When all you know is pain you don’t know that that is not normal. It is not a woman’s lot to suffer, even if we’ve been raised that way." (Address, 2011 Endometriosis Foundation of America Blossom Ball)

A commenter on one endometriosis Facebook group reported, "My doctor told me having a baby would help my pain. I'm only eleven.

I wish that men got endometriosis. If it was painful when they ejaculated, you know they would find a cure immediately and every doctor would know what to do to make it less painful, even a foot doctor.

We have a duty tonight. Everybody, and guys this for you as well because I know you know women. You have a duty tonight. You only have to tell one other person what you heard. Just tell them what you heard, or ask them have you ever heard of this? If the answer is no, share what you learn tonight. That’s all. You don’t have to do anything else. You just have to tell somebody else. You have to take whatever stigma people think that is there. You have to take it. It’s not male or female. It has nothing to do with that. It has to do with, here’s a disease you don’t know about and you need to know about it. It’s that simple. It’s not rocket science. [Whoopi Goldberg on endometriosis awareness from the 2009 Blossom Ball]

It never occurred to me that somehow women did know about it. It just never occurred to me. Yes I am wearing sneakers too. You are in a suit, I am comfortable. So when she explained to me that this was the first event really of its kind, it floored me. So I called my daughter who is in her 30s now and I said “do you know what endometriosis is?” She said, “what? Have to pack the pack the busters.” I said “no man, you have never heard of it?” No she said. I do not know what it is, and it occurred to me that my 30-year-old daughter who I told about endometriosis and it didn’t stick. If she didn’t know, and she is one of the hippest people I know, and her daughter doesn’t know, she has 19-year-old and she is a 13-year-old. The boy, we don’t care much about if he knows about it so much. There is other stuff for him to learn. Like how to roll a condom, things like that. You know, and it occurred to me that if they didn’t know that there were hundreds of thousands girls out there that don’t know. It is not because their mothers don’t want to tell them, because it’s not religion, it’s pure ignorance. We don’t know, we don’t have the information, we have it now, and so now is why this very first gathering is happening. Now is why we’re all sitting here looking really fabulous as you are... [Whoopi Goldberg on endometriosis awareness from the 2009 Blossom Ball]

As twisted as it sounds, I was so happy that I had received a diagnosis.

And in many ways, people who live with chronic pain are grieving. We are grieving for the lives we could’ve had, but don’t, because of pain.

Being mad at my own body for something it has no control over only succeeded in making everything hurt even more.

I had bad endometriosis when I was younger, and a doctor told me I’d have a lot of trouble getting pregnant.

It's a bittersweet feeling to finally name what ails you after so long. On the one hand it's a relief because you can finally take action. On the other, endometriosis can feel overwhelming. There isn't enough useful information about it, nothing that encapsulates its all-encompassing nature or defines the all-involving path to recovery - except this book which is mind-blowingly relatable, relieving, and helpful.

Processed, heated, and refined fats, as well as “trans fats” (hydrogenated fats), are the bad fats commonly found in foods such as margarine, shortening, your average American pizza, and the processed cheese so widely available in grocery stores. These bad fats have been linked to a higher risk of heart disease, macular degeneration, multiple sclerosis, certain cancers, diabetes, obesity, osteoporosis, infertility and endometriosis, and depression.3 (For more on fats, see chapter 16.)

Although it seems that most people with endometriosis begin having symptoms at or around the time of their first period (whether they know it or not), calling endometriosis a “period problem” doesn’t account for the phenomenon of endometrial lesions found in the pelvic cavities of fetuses. Fetuses who have, clearly, not menstruated. Endometriosis has been discovered during fetal autopsies, a finding that seriously challenges the widely held belief that endometriosis is strictly a menstruation-dependent disease.

You are you because you love the way the world looks through your camera. You are you because of the way you love your friends and family. Not because some scar is on your body. That's a part of your history and what helps form what you believe in. not what defines you.

In other words, we really don’t know how many people have endometriosis, and why we don’t has far less to do with a lack of scientific research and advancement than with our antiquated belief systems and power structures. But it’s not even that we don’t understand endometriosis on a population level: we can’t even seem to get it right with just one patient.

But remember, nature is not quick. If you plant a seed in a ground today it will not be fully bloomed tomorrow. It takes time. It takes patience.

I do not believe that someone’s honesty about their pain or heartache is wrong simply because someone else in the world also has heartache. It’s not a fucking competition.

Most of what I was taught about sex was bullshit. Most of what the majority of us are taught about sex is bullshit, for that matter, but it’s extra bullshit for women.

Leaders bleed.

And while my illnesses don’t define me, they are a part of me. They have shaped me into the person I am today. Every decision I make includes them.

Surely, I can’t be expected to be normal considering the abnormality that is my body?

But before we can even address the mistreatment that occurs once a woman is interacting with the health-care system, we have to address the fact that some women never get that far. We won’t get a true picture of the incidence of endometriosis until we specifically look for it in marginalized communities. And before we can do that, we have to address the disparity in access. Social epidemiologist Jhumka Gupta has said that endometriosis is a social justice issue. In her speech at the Worldwide Endo March in Washington, DC, on March 19, 2016, she said that endometriosis is a social pathology, which she defined as “gender inequality, social injustice, and attitudes of society that keep women and girls from fully reaching their potential.

Avoid Menstruating If, you are using hormonal contraception, such as a low-dose birth control pill, you can avoid the whole change in pH caused by menstrual blood by avoiding menstruation. That’s right! Take your pill straight through the placebo days and skip having your period. And yes, this is safe. As discussed in chapter 9, skipping menstruation is a common treatment for endometriosis.

Endo doesn't just affect the pelvic region. The body's response to the inflammation it causes sensitizes the central nervous system, and if you don't know what's going on - as I didn't - this sensitization ***** with your head. If your head's not right, there's a good chance you're in distress. This is where endo crosses the line from a physical ailment to an emotional one too. -- from the forward, written by Bojana Novakovic

In the car inching its way down Fifth Avenue, toward Bergdorf Goodman and this glamorous party, I looked back on my past with a new understanding. This sickness, the “endo-whatever,” had stained so much—my sense of self, my womanhood, my marriage, my ability to be present. I had effectively missed one week of each month every year of my life since I was thirteen, because of the chronic pain and hormonal fluctuations I suffered during my period. I had lain in bed, with heating pads and hot-water bottles, using acupuncture, drinking teas, taking various pain medications and suffering the collateral effects of them. I thought of all the many tests I missed in various classes throughout my education, the school dances, the jobs I knew I couldn’t take as a model, because of the bleeding and bloating as well as the pain (especially the bathing suit and lingerie shoots, which paid the most). How many family occasions was I absent from? How many second or third dates did I not go on? How many times had I not been able to be there for others or for myself? How many of my reactions to stress or emotional strife had been colored through the lens of chronic pain? My sense of self was defined by this handicap. The impediment of expected pain would shackle my days and any plans I made. I did not see my own womanhood as something positive or to be celebrated, but as a curse that I had to constantly make room for and muddle through. Like the scar on my arm, my reproductive system was a liability. The disease, developing part and parcel with my womanhood starting at puberty with my menses, affected my own self-esteem and the way I felt about my body. No one likes to get her period, but when your femininity carries with it such pain and consistent physical and emotional strife, it’s hard not to feel that your body is betraying you. The very relationship you have with yourself and your person is tainted by these ever-present problems. I now finally knew my struggles were due to this condition. I wasn’t high-strung or fickle and I wasn’t overreacting.

Sex was everywhere. And since I couldn’t have it, at least not in the way that I felt was expected of me at the time, I believed that no one would ever want to be with me, and no one would ever be able to love me. I felt broken and incomplete.

Some people can deal easily with the pain and some people cannot. Some people can work with it and some cannot. We are all different and we are going to face pain individually. Our gender, our culture, and even our age will determine whether we can make

Despite knowing for a fact that this pain and these illnesses are not my fault, that’s hard to remember on the bad days. I begin to blame myself and then feel ashamed that I caused someone else to pause their life to help me through something that my brain is telling me I caused.

The world is shit most of the time, but it’s made shittier when we try to talk about our shit and are told that we’re not allowed to think of our lives as shit because someone else’s shit smells worse. Shit is shit. There’s a lot of shit—it’s a big world, and there’s unfortunately room for all our shit.

This is all your life is, just a series of bad pain days over and over and over again. What is the point? How will you be able to do this for another ten years? Why would anyone ever want to spend their life with you if this is how it is? How would you ever be able to start a family if you wanted one? What is the point of your life? Why do you even exist if you’re just going to be in pain all the time? People are tired of hearing you complain about it. It’s endless. It’s all you talk about. It’s all you are.

Saying that endometriosis (like hysteria before it) is a disease exclusive to women, or even of uteruses, isn’t just noninclusive -- it’s not true. Endometriosis has been found in [cisgender] men.

Structural womb-issues aside, endometriosis is a disease. Terrorist cells are invading my insides and taking my pipework and my dreams hostage. It’s like a non-fatal form of cancer. Would you tell someone with cancer to ‘relax’? Would you advise someone with diabetes to ‘just go on an island holiday cruise’?

Sex hormones/Reproductive health history. Sex hormone imbalances can be a factor in Hashimoto’s, and here is some of the information I ask for on my health history forms: Do you currently take, or have you taken oral contraceptives or bioidentical hormones? Do you currently take, or have you had an intrauterine device (IUD)? If you answered “yes,” was it a copper or hormonal IUD? How many live births have you had? Were they natural births or Cesarean sections? Is there a history of ovarian cysts? Is there a history of uterine fibroids? Is there a history of endometriosis? Is there a history of fibrocystic breasts?

Being honest and upfront about the very real limitations I experience because of my pain is not “being a pessimist.” People are allowed to feel how they feel, myself included. It is not up to others to decide whether or not the emotions someone is experiencing are valid or not. No one on earth was appointed Gatekeeper of Valid Emotions.

endometriosis,

None of my friends in high school showed any signs that their insides were on fire for a quarter of their lives. Were they just really good at pretending?

Eventually a consultant shook his head as Rachael told him how much she hurt and told her, ‘We have to send you home. There’s nothing wrong with you.’ But there was something wrong with her. Rachael was eventually diagnosed with endometriosis, a disease where womb tissue grows elsewhere in the body, causing extreme pain and sometimes infertility. It takes an average of eight years to diagnose in the UK,56 an average of ten years to diagnose in the US,57 and there is currently no cure. And although the disease is thought to affect one in ten women (176 million worldwide58) it took until 2017 for England’s National Institute for Health and Care Excellence to release its first ever guidance to doctors for dealing with it. The main recommendation? ‘Listen to women.’59

If endometriosis affected straight men and their penises—never mind. You’d never hear the end of it. I imagine you have male clients who complain of women not being “enthusiastic” enough in bed. Well, chances are the women are in terrible pain. Or just average pain. Most women don’t say anything, though, because we’re conditioned to suffer, and to make men feel good about themselves.

When I tell my doctor aunt about my endometriosis diagnosis (“endo” for those in the know), she says I better get cracking. “In medical school, that was the first thing we were taught,” she says. “After an endo diagnosis you say get started now.” My doctor never said that to me. He was casual—now that I consider it, too casual? I had been right all along, known better than any doctor: something really was wrong down there. So I have to get started now. It’s time to get started now. And why not? I wonder. I have a job. I am in love. We have an extra bedroom that we are currently using for shoes, boxes, and occasional guests. I am told my dog is unusually good with children. I already look fucking pregnant. Why the hell not? I can feel them. The babies. They’re not crawling all over me. They’re not vomiting in my hair or shrieking. They’re doing perfectly normal baby things, and I’m keeping them alive. But I resent them. Their constancy, their intrusion on my relationship and my free time and my naps and my imagination and my heart. They’ve come too soon, and I can’t do any of what I had planned. All I can do is survive. My

We'll be up in a minute,' states Katya, speaking from a particular stillness, in sudden recognition of a dream made real, a dream annulled, so she had thought, by long words of the womb—'endometriosis,' 'hyperplasia'—and now made true, this vision of a boy on a staircase answering to his name, coming to her call. My son. She raises one arm slightly in front of Lev at her side, in gentle impediment. Not yet. Wait here. Let me see. This was always preordained.

Over twenty million women suffer from polycystic ovary syndrome (PCOS), fibroids, endometriosis, painful/difficult/heavy periods, and thyroid and adrenal issues.

Well, Melinda, you little devil,” John said, grinning. She rested the back of her hand over her eyes while John and Jack studied the ultrasound, examining that little heartbeat in a barely moving mass. John pointed out small buds where arms and legs would be growing. “When was your last period?” John asked her. She took the hand off her eyes and glared at her husband. “Um, she hasn’t exactly ever had one.” “Huh?” John said. “That I know of,” Jack said with a shrug. “A year and a half ago, all right?” she said crisply. “Approximately. I’ve been nursing. I’ve been pregnant. I’ve been cast into hell and will live out my days with sore boobs and fat ankles.” “Whew. Going right for the mood swings, huh? Okay, looks like about eight weeks to me. That’s an educated guess. I’m thinking mid to late May. How does that sound?” “Oh, duckie,” she answered. “You’ll have to excuse my wife,” Jack said. “She was counting on still being infertile. This might cause her to finally give up that illusion.” “I told you if you made one joke—” “Melinda,” Jack said, his expression stern, “I was not joking.” “I would just like to know how this is possible!” she ranted. “David is like a miracle pregnancy, and before I even get him off the breast, I’ve got another one cooking.” “Ever hear the saying, pregnancy cures infertility?” John asked her. “Yes!” she said, disgusted. “You know what I’m talking about—probably better than me. I guess you didn’t think it would apply to you, huh?” “What are you talking about?” Jack asked John. “A lot of conditions that cause infertility are made better by pregnancy—endometriosis being one. Often when you finally score that first miraculous conception, the rest follow more easily. And when you change partners, you change chemistry. You’re going to want to keep these things in mind,” he said. And he grinned.

Endometriosis Endometriosis is a painful condition in which bits of the endometrium (uterine lining) grow outside your uterus. These are called endometriosis lesions. Chocolate cysts The most common site for endometriosis lesions is the ovaries. This growth is referred to as an endometrioma or chocolate cyst. Endometriosis lesions also grow on Fallopian tubes, pelvic ligaments, and on the outside of your uterus, bowel, and bladder. Actually, they can grow anywhere—even inside your nose. Endometriosis lesions are sensitive to estrogen, so they swell and bleed with every menstrual cycle. Eventually, this causes pain, scar tissue, and heavy periods with large clots. Endometriosis can also impair fertility. What Causes Endometriosis? How does endometrial tissue ends up outside the uterus? There are a couple of theories. One theory is that menstrual fluid enters the pelvis via retrograde flow through the Fallopian tubes. This is not likely to be the correct explanation because retrograde flow occurs in most women, yet only a few women develop endometriosis. A second theory is that the endometrial tissue is laid down before birth—during your own fetal development. The tissue then lies dormant until it is activated by your hormones at puberty. Whatever the original source of the endometriosis lesions, your immune system is a big part of the problem. Your immune system produces inflammatory cytokines and autoantibodies that inflame endometriosis lesions and promote their growth. Without that inflammation, you are unlikely to suffer the condition of endometriosis (although you may still have dormant endometriosis lesions in your pelvis). Researchers have come to view endometriosis not as a hormonal condition, but as an autoimmune disease.

I did remember to tell him about my periods and the pain and he said I might be a “candidate” for endometriosis. It affects fertility he said. No treatment, no cure. Which means now I can be terrified equally of getting pregnant and not ever getting pregnant.

endometriosis is as common as type 2 diabetes, but research into it is scant and still nobody knows what causes it and how to control it.

nobody knows what causes endometriosis and there is still no treatment to rid the body of it.

I learned new words that day: endometriosis, fibroids, hysterectomy. She had been in pain for months. She never told me why she had not sought treatment earlier; there could have been any number of reasons. What I now know is that my parents' employment at the time was tenuous, and we had no health coverage.

I was not alone in my illness, nor alone in being blamed for my illness. The illness was chronic. We grew fibroids. Nobody knew why more Black and brown women were afflicted at a higher rate. From Audre Lorde: "When you live on the edge of any structure, you have to know that survival is not theoretical." Our uterine linings began appearing in unexpected parts of our bodies, including our brains. Endometriosis. Prolapse. Fibromyalgia. Some of us dissociated. Some of us had panic attacks. The level of cortisol in our bloodstreams grew toxic. They removed the uterus of my friend. They put children in cages at the border. We were angry at the lies of women's lib and civil rights, at the failed experiment of our country. We admitted to ourselves that white people could not be redeemed. We were taunted by our president's tweets. Unsure what to do with our rage, we turned it on ourselves. Our immune systems attacked us. We grew tumors. Me, too, we repeated. Me, too. The previous season we'd begun saying, Black lives matter. Nobody listened. Nobody knew how to balance our hormones. Probably there was not enough money in it. They theorized it was because we were not bearing enough children. We begged for estrogen and were refused. Our perception was either extremely distorted or crystal clear. Our trauma was too complex to diagnose.

In the real world, it’s not unusual to see a panel of all-male doctors discussing the symptoms and treatment of endometriosis. The irony that male doctors often don’t listen to women’s pain, or that they blame it on weight or stress, is not lost on me. In fiction and reality, men overlook and overwrite women, and it impacts almost every facet of our lives.

People still feel uncomfortable when I bring up my vagina. Viagra is still being easily covered by insurance while people sometimes have to lie and say the physical therapy they are getting for their vagina is actually for their back so that insurance will cover it, and we still don’t have anything close to an accessible treatment plan for any of it. Millions of people live with conditions similar to mine, but stigma, shame, and lack of awareness keep us all from talking about and normalizing it.

When I was seeing this guy, I fully believed that being loved by someone was synonymous with having a sexual relationship with them. And I believed this because it was what I had been told time and time again by TV shows, commercials, magazines, and movies.

When I was a little kid, I worshiped Josh Lewenthal, now, I couldn’t care less about him, I just need his sperm.

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face - Eleanor Roosevelt

Today, endometriosis affects an estimated one in ten women across the world. It takes an average of between six and ten years to be correctly diagnosed. Nowhere near enough research and time has been spent on figuring out the cause of this debilitating disease; and this has led to a woeful lack of care and respect for sufferers.

the research showed that when the allergies were addressed, the women’s endo symptoms also improved.

were exposed in utero to a family of chemicals called dioxins (this is the environmental factor).

Emma was 25 years old, but at only 12, when she got her first period, she had become aware that something was wrong with her body. Excruciating pains that felt like sharp shards of glass were cutting her lower abdomen open. Not even the most potent painkillers could alleviate them. They often plagued her for at least one week a month until she collapsed.

10 Things You Should Always Discuss with Your Gynecologist – Motherhood Chaitanya Hospital Your gynecologist is your partner in women’s health, and open communication is key to receiving the best care. From reproductive health to general well-being, here are 10 crucial topics you should always discuss with your gynecologist. If you’re in Chandigarh, consider reaching out to the Best Female Gynecologist in Chandigarh through Motherhood Chaitanya for expert care. 1. Menstrual Irregularities Don’t dismiss irregular periods as a minor issue. They could be indicative of underlying conditions like polycystic ovary syndrome (PCOS), thyroid disorders, or hormonal imbalances. 2. Contraception Discuss your contraception options to find the one that best suits your needs and lifestyle. Your gynecologist can provide guidance on various birth control methods, from pills to intrauterine devices (IUDs). 3. Pregnancy Planning If you’re planning to start a family, consult your gynecologist for preconception advice. This can help you prepare your body and address any potential risks or concerns. 4. Sexual Health Openly discuss any concerns related to sexual health, including pain during intercourse, sexually transmitted infections (STIs), or changes in sexual desire. Your gynecologist can provide guidance and offer solutions. 5. Menopause and Perimenopause If you’re in your 40s or approaching menopause, discuss perimenopausal symptoms like hot flashes, mood swings, and changes in menstrual patterns. Your gynecologist can recommend treatments to manage these changes. 6. Family History Share your family’s medical history, especially if there are instances of gynecological conditions, such as ovarian or breast cancer. This information is vital for early detection and prevention. 7. Breast Health Talk to your gynecologist about breast health, including breast self-exams and recommended mammograms. Regular breast checks are essential for early detection of breast cancer. 8. Pelvic Pain Don’t ignore persistent pelvic pain. It can signal a range of issues, including endometriosis, fibroids, or ovarian cysts. Early diagnosis and treatment are crucial. 9. Urinary Issues Frequent urination, urinary incontinence, or pain during urination should be discussed. These symptoms can be linked to urinary tract infections or pelvic floor disorders. 10. Mental Health Your gynecologist is there to address your overall well-being. If you’re experiencing mood swings, anxiety, or depression, it’s important to discuss these mental health concerns. Your gynecologist can offer guidance or refer you to specialists if needed. In conclusion, your gynecologist is your go-to resource for women’s health, addressing a wide spectrum of issues. Open and honest communication is essential to ensure you receive the best care and support. If you’re in Chandigarh, consider consulting the Best Gynecologist Obstetricians in Chandigarh through Motherhood Chaitanya for expert guidance. Your health is a priority, and discussing these important topics with your gynecologist is a proactive step toward a healthier, happier you

This is the story of an awe-inspiring mother driven to improve our planet and the lives of all its daughters. It’s also a story about men: what it is to be the father, husband or son of such an amazing woman. To be sat down as a man with open eyes and ears to understand the harsh realities of period poverty, the healing power of tourmaline for endometriosis, brilliant entrepreneurship in the face of discrimination, and the power of love to find diamonds in the pieces of a broken heart.’ — Brian Ballantyne, author of Confessions of a Working Father, co-founder, Men for Inclusion, and former Senior Program Manager – Inclusion & Diversity, Amazon

In the intricate tapestry of a woman’s reproductive health, endometriosis can be a challenging thread. This condition, affecting millions of women worldwide, not only brings physical discomfort but also raises concerns about fertility. With insights from professionals like a gynecologist in Chandigarh at Motherhood Chaitanya Hospital, let’s delve into the world of endometriosis and its influence on fertility, understanding the complexities and avenues for expert care.

Endometriosis & Infertility Endometriosis has been estimated to affect up to 10-15% of women at their reproductive age. According to Dr Beena Muktesh, MBBS, MS-Obstetrics & Gynaecology, Fertility Specialist, around 30-50% of women with endometriosis have infertility. Moreover, women with advanced endometriosis also have poor ovarian reserve, low eggs and embryo quality as well as poor implantation. A lot of women with endometriosis experience pain and heavy periods, however, they are not aware of the disease. The disease is often discovered in advanced stages that eventually lead to infertility. What is Endometriosis? Endometrium refers to the inner lining of your uterus. When you have a period, this inner lining falls away from the walls of your uterus and If you get pregnant, the embryo attaches itself to the endometrium for development. Endometriosis is a condition wherein the tissues like endometrium grow on other parts of your body. When these tissues start growing in the wrong places, it causes excruciating pain and makes conceiving difficult.

Although medicine acknowledges that it can be caused by many diseases, including endometriosis, irritable bowel syndrome, ovarian cysts, pelvic inflammatory disease, fibroids, abscesses and uterine prolapse, the actual cause can be difficult to identify, and many sufferers are misdiagnosed.

Although medicine acknowledges that it can be caused by many diseases, including endometriosis, irritable bowel syndrome, ovarian cysts, pelvic inflammatory disease, fibroids, abscesses and uterine prolapse, the actual cause can be difficult to identify, and many sufferers are misdiagnosed.7 And, frustratingly, the long association between women’s pelvic pain and their emotions continues to stymie understanding.

I began to realize that I knew more about endometriosis than my doctor did.

I am amongst a community of warriors.

In times like these, we must be warriors.

One of the neuroplasticians I described in The Brain That Changes Itself, Barbara Arrowsmith Young, who had healed her many learning disorders with brain exercises, also visited Kahn. As a younger woman, she had had severe endometriosis, a condition in which the cells lining the womb grow elsewhere in the body; it can cause pain and bleeding and rendered Barbara unable to have children. Multiple surgeries for it led to the development of tremendous scarring inside her abdomen, called postsurgical adhesions.

The only thing that troubled me more than being a mystery was the realization that I was also the one who had to solve it.

Why does your doctor love the pill so much? Because it is a handy catch-all solution. Missing periods? Take the pill. Period pain? Take the pill. Polycystic ovary syndrome or endometriosis? Take the pill.

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The pain has lessened with age, but never goes away. Now the doctors give it a name—endometriosis. Their tone when talking to me is always one of judgmental solemnity, as if this sickness is a curse given to me because I never found a husband, instead of a curse that prevented me from getting one. Or maybe I have always just imagined this in their voices.

Endometriosis, or painful periods? (Endometriosis is when pieces of the uterine lining grow outside of the uterine cavity, such as on the ovaries or bowel, and cause painful periods.) Mood swings, PMS, depression, or just irritability? Weepiness, sometimes over the most ridiculous things? Mini breakdowns? Anxiety? Migraines or other headaches? Insomnia? Brain fog? A red flush on your face (or a diagnosis of rosacea)? Gallbladder problems (or removal)? — PART E — Poor memory (you walk into a room to do something, then wonder what it was, or draw a blank midsentence)? Emotional fragility, especially compared with how you felt ten years ago? Depression, perhaps with anxiety or lethargy (or, more commonly, dysthymia: low-grade depression that lasts more than two weeks)? Wrinkles (your favorite skin cream no longer works miracles)? Night sweats or hot flashes? Trouble sleeping, waking up in the middle of the night? A leaky or overactive bladder? Bladder infections? Droopy breasts, or breasts lessening in volume? Sun damage more obvious, even glaring, on your chest, face, and shoulders? Achy joints (you feel positively geriatric at times)? Recent injuries, particularly to wrists, shoulders, lower back, or knees? Loss of interest in exercise? Bone loss? Vaginal dryness, irritation, or loss of feeling (as if there were layers of blankets between you and the now-elusive toe-curling orgasm)? Lack of juiciness elsewhere (dry eyes, dry skin, dry clitoris)? Low libido (it’s been dwindling for a while, and now you realize it’s half or less than what it used to be)? Painful sex? — PART F — Excess hair on your face, chest, or arms? Acne? Greasy skin and/or hair? Thinning head hair (which makes you question the justice of it all if you’re also experiencing excess hair growth elsewhere)? Discoloration of your armpits (darker and thicker than your normal skin)? Skin tags, especially on your neck and upper torso? (Skin tags are small, flesh-colored growths on the skin surface, usually a few millimeters in size, and smooth. They are usually noncancerous and develop from friction, such as around bra straps. They do not change or grow over time.) Hyperglycemia or hypoglycemia and/or unstable blood sugar? Reactivity and/or irritability, or excessively aggressive or authoritarian episodes (also known as ’roid rage)? Depression? Anxiety? Menstrual cycles occurring more than every thirty-five days? Ovarian cysts? Midcycle pain? Infertility? Or subfertility? Polycystic ovary syndrome? — PART G — Hair loss, including of the outer third of your eyebrows and/or eyelashes? Dry skin? Dry, strawlike hair that tangles easily? Thin, brittle fingernails? Fluid retention or swollen ankles? An additional few pounds, or 20, that you just can’t lose? High cholesterol? Bowel movements less often than once a day, or you feel you don’t completely evacuate? Recurrent headaches? Decreased sweating? Muscle or joint aches or poor muscle tone (you became an old lady overnight)? Tingling in your hands or feet? Cold hands and feet? Cold intolerance? Heat intolerance? A sensitivity to cold (you shiver more easily than others and are always wearing layers)? Slow speech, perhaps with a hoarse or halting voice? A slow heart rate, or bradycardia (fewer than 60 beats per minute, and not because you’re an elite athlete)? Lethargy (you feel like you’re moving through molasses)? Fatigue, particularly in the morning? Slow brain, slow thoughts? Difficulty concentrating? Sluggish reflexes, diminished reaction time, even a bit of apathy? Low sex drive, and you’re not sure why? Depression or moodiness (the world is not as rosy as it used to be)? A prescription for the latest antidepressant but you’re still not feeling like yourself? Heavy periods or other menstrual problems? Infertility or miscarriage? Preterm birth? An enlarged thyroid/goiter? Difficulty swallowing? Enlarged tongue? A family history of thyroid problems?

Probiotics—These help maintain healthy intestinal flora and healthy estrogen levels. Make sure you get human-strain probiotics that have live cultures. Consider taking 10–60 billion units per day. Plant Phytoestrogens—These plant-based compounds have healthy estrogen-like activity and have been found helpful for a variety of conditions, including menopausal symptoms, PMS, and endometriosis. Phytoestrogens can be found in soy, kudzu, red clover, and pomegranate. Resveratrol is a bioflavonoid antioxidant that occurs naturally in grapes and red wine and has been reported to inhibit breast cancer cell growth in laboratory studies. Black cohosh—This herb has been used for centuries by Native Americans for hormonal balance in women.

My sister hesitated before saying, “Jules has really…painful periods. Beyond regular cramps. The pain usually goes away after a day or so, but during that day…” “It’s unbearable,” I finished. A hard knot formed in my chest. “Endometriosis?

After years of agonizing periods, she was diagnosed with endometriosis in her twenties. Though she died at twenty-seven, she was not a natural member of that club; she wasn’t the lead singer of a band, and she didn’t live particularly fast to die young. If you’d asked Nicky, she would have said she lived an extraordinarily ordinary life as a tenth-grade English teacher at a charter school on the Upper West Side, ten blocks from where she grew up. If it seemed a smaller existence than her sisters’, she never saw it that way. She loved her students and dreamed of one day having a family. Nothing about her life portended her death, except for the fact she was in pain.

behind her eyes lies a hidden mystery a mask she bears to disguise the pain when she says, ’I’m fine” what does she mean? no, her pain didn’t just evaporate no, the surgery didn’t miraculously cure her her pain is 24/7 like the sun never truly going down rising and falling medication that doesn’t fix it this pain is bound to her even now as she's sitting next to you her smile never fading but you don’t want to hear the truth and she’s too sick and tired of explaining that’s why she says, “I’m fine

But as more and more “small things” went wrong—endometriosis, hives, the labral tear in my hip, the arthritis in my neck, the thyroid disease, the failure to get pregnant, the fatigue and brain fog—I had started to see my body differently, not as a collection of parts but as an entangled system.

It's crystal clear to me that no one wants to hear about it, but I will never finish needing to tell how much it hurts, how bad it is. I'm always looking for a scale to measure it by, some way to pierce the thick skin that separates me from other people, to make them understand.