- Chapter 1: You’re Not Crazy
- Chapter 2: The Road Less Traveled
Back then, endometriosis was not well known. The understanding of every disease must begin somewhere, and we had barely cast a light on this one. In fact, it was not until the late 1980s that a more specific definition and diagnoses of the early stages of the disease began to surface. Dr. David Redwine and Dr. Dan Martin,who were practicing from Oregon and Tennessee, respectively, defined early endometriotic lesions as being differently colored than normal, healthy tissue. Today, it is known that endometriosis lesions are varied in color, appearing as black, brown, red, blue, white, and even clear. At the time, however, the truth behind this disease concerning women’s pelvic pain was only beginning to become more apparent.
- Chapter 3: Endo What?
- Chapter 4: Pain, and its Effect on Personality
- Chapter 5: From Early Endo to a Frozen Pelvis
Endometriosis is classified into four stages by the American Society for Reproductive Medicine: I (minimal), II (mild), III (moderate), and IV (severe). Criteria for determining those stages are based on the location of the endometriosis, the extent to which it has spread, the depth of the endometriosis, the presence and size of ovarian endometriomas (more on those in just a moment), and the presence and severity of adhesions. A point system determines the stage a woman is in. It has been revised three times in the past forty or so years to reflect the continued progress we have made in learning about the disease. A score of one to fifteen indicates minimal or mild endometriosis (stage I or II). A score of sixteen or higher indicates moderate to severe endometriosis (stage III or IV). However, the point system and the four stages have no specific correlation to any symptoms and exclude the infiltrative nature of the disease. That means the level of pain a woman is in plays no role in determining which stage she is in. So someone with stage IV (severe) endometriosis may feel little or nothing at all, while someone with a stage I (mild) case could be seriously hurting.
- Chapter 6: The Taboo of Periods
- Chapter 7: Killer Cramps
Light cramps during a period are normal. They may feel uncomfortable, but an over-the-counter pain medication should take care of the problem well enough to enable a woman to go about her day. But killer cramps, the second cardinal symptom of endometriosis, are not the “normal” kind of cramps. These cramps are frequently associated with very heavy and prolonged menstruation, and the blood is usually clotted. Killer cramps are of uterine origin in adolescents, but in later years, because the disease spreads to different areas, they are signs of more advanced endometriosis. The pain from killer cramps is so severe, so intense, that it completely alters a woman’s daily life. She may have to stay home from work, school, or other activities, and for days at a time. She may not be able to play with her kids or drive them to their appointments. She may have to excuse herself in the middle of a social function and find somewhere private to lie down so that she can catch her breath and try to mentally get through the episode. She may not even be able to get out of bed to begin with. Killer cramps kill whatever she is doing or wanting to do at the time. They aren’t just a nuisance that she has to deal with, like normal cramps. They take over her life.
- Chapter 8: Painful Sex
One of my patients, Beth, was eleven years old when she had her first period, and it was an extremely painful one. “I was at school when it happened, and I came home crying because I had never experienced pain like that in my life,” she said. “Every month from then on I experienced excruciating pain for three or four days. I grew up on a military base, so I went to the hospital there and they said, ‘You’re a female; this is normal.’ It continued to be really bad for about the next five years. When I turned sixteen and would have my periods, I would curl up in a ball and sometimes pass out. They started me on birth control, but that didn’t do anything. Neither did ibuprofen. When I went to college, I just assumed that I would have to shut down during my period. I would have to plan my life around those three to five days every month.”
Her first sexual experience was with her college boyfriend when she was nineteen. “It was horrible,” she said. “I just thought maybe I didn’t like it because it hurt. It was not as painful as my menstrual cramps, but it was very uncomfortable. It didn’t feel right. It didn’t feel normal. I also started to notice that my checkups with my OB/GYN were incredibly painful. The doctor would just say, ‘What’s wrong? Relax. This shouldn’t hurt.’ It made me very scared to go to the doctor each year.”
Beth, now thirty-two, is married. She and her husband dated for six years before they were engaged, so they’d been together for a while before I diagnosed her with endometriosis and did surgery on her in 2012. The endometriosis impacted their sex life during the years before surgery. Her husband knew intercourse caused her pain. She said sometimes they would go for a couple of months without being intimate. “It wasn’t easy, that’s for sure,” Beth said. But their deep emotional love for one another helped them both get through their struggles.
“I loved him so much that I wanted to be close to him physically. I wanted that for us more than I cared about my own comfort,” Beth said. “At the same time, he was very respectful and careful with me. He knew it was a physical issue, and he was very understanding. If sex had been the most important thing to him, then our relationship wouldn’t have made it. That intimacy is important in a relationship, so it was frustrating when it couldn’t happen as often as we wanted, but we are so interested in each other mentally. It’s not easy, but you can definitely overcome it when the love is there.”
- Chapter 9: Cut with Razor Blades
- Chapter 10: Neuropathy
- Chapter 11: Four Miscarriages…and a Baby
Endometriosis is the one disease with which fertility problems are most closely associated. Many times, a woman who has difficulty conceiving will have a case of endometriosis that does not come with severe symptoms. This is known as silent endometriosis. These silent sufferers eagerly crowd into the waiting rooms of in vitro fertilization (IVF) clinics with the hope of conceiving. IVF is a method in which a woman’s eggs are collected and fertilized by sperm in a lab, then implanted in her uterus. These women are often not told they may have endometriosis, and the in vitro attempts they take will generally fail. If these patients question the possibility of endometriosis as the cause for the failure, they are usually falsely assured by their fertility specialist that endometriosis does not have a negative, or even significant, impact in conception. Sometimes, they will even claim that pregnancy will cure a patient’s endometriosis. By the time multiple IVF attempts have failed, these patients, at this point between thirty-five and forty years old, are told that their ovaries have no reserves left and that egg quality is poor.
- Chapter 12: Fatigue
- Chapter 13: Genetics
- Chapter 14 : “It Was All So Stupid”
- Chapter 15: IBS: A Dump Diagnosis
Irritable bowel syndrome, or IBS, is a relatively common disorder that affects the colon. Many of its symptoms are similar to those of endometriosis, such as diarrhea, constipation, bloating, cramping, and abdominal pain. Unlike endometriosis, IBS can be more or less controlled with medication or a change in diet. Surgery is rarely needed. Doctors often mistake endometriosis for IBS because of the similarities in symptoms and because they don’t know much, if anything, about endometriosis. I know that the intentions of these doctors are very good—they want their patients to get well—but their knowledge is limited.
- Chapter 16: Hysterectomy Bad
- Chapter 17: Appendicitis
- Chapter 18: Ovarian Cysts
Effects & Alternatives
- Chapter 19: Those Who Suffer with Them
- Chapter 20: Living Just to Work
- Chapter 21: You Learn Who Your True Friends Are
- Chapter 22: A Miscarriage
As is usually the case with my patients, Laura also endured severe emotional trauma from endometriosis, especially when she tried to have a baby. Fertility issues are some of the most heartbreaking effects of this disease.
- Chapter 23: Alternatives, Not Substitutes
- Chapter 24: Painkillers
- Chapter 25: Acupuncture
- Chapter 26: Good Nutrition
As one of my patients, Casey, was leaving her initial appointment with me, I gave her some nutritional advice. “I remember Dr. Seckin saying to me, ‘Remember, no gluten or dairy, eat organic, and try to stay away from sugar, caffeine, and red meat.’ At that moment, my whole world changed,” Casey said. “I shouldn’t have been too surprised that endometriosis and diet were connected, but I was. It never crossed my mind. Furthermore, after talking to many women in the endometriosis community, they verified that they, too, felt better after staying away from certain foods. Many women, through the process of trial and elimination, had figured out just what Dr. Seckin had told me.”
“It is really hard eating gluten-free, dairy-free, organic, and staying away from caffeine, alcohol, and most sugar,” Casey said. “There are times I do really well with what I eat. There are other times when I do not do as well and pay the price for eating as I wish. Can eating right cure my endometriosis? No, but I do feel that when I eat right, my quality of life improves dramatically.”
Ultimately, there is no conclusive magical endometriosis diet that works for everyone, but the measures you take to reduce inflammations can alleviate symptoms. As always, listen to your body. Pay attention to how you feel after eating a certain food or drinking a certain drink. Like Casey said, what you eat or don’t eat is not going to cure endometriosis, but good nutrition could have a positive effect on the pain you feel by reducing inflammation and balancing your hormones.
- Chapter 27: Birth Control Pills
- Chapter 28: Pseudomenopause and Menopause
Endometriosis may persist after menopause for two reasons. One reason concerns the fact that the body, particularly the fat tissue under the skin, continues to produce estrogen. Estrogen production stimulates the endometriosis foci. The second and more common reason is the excessive amounts of estrogen replacement therapy that many women use in order to ease the symptoms of menopause.
- Chapter 29: Hysterectomy Not So Bad
When a doctor tells you that a hysterectomy is the only way to end your pain, he or she may be right, but you need to ask a lot of questions first, especially if you still want to try to have children some day. Is a hysterectomy the only solution? Could the source of pain possibly be something besides the uterus, for instance the surrounding scar tissue on nearby organs?
- Chapter 30: Freezing Your Eggs
The Care You Deserve
- Chapter 31: Your First Visit: What to Expect
- Chapter 32: The Gold Standard
Laparoscopic deep-excision surgery is what I call the gold standard of endometriosis surgeries. By magnifying everything, laparoscopy offers a much clearer view. This allows me to perform surgery in the most precise manner possible. I have been modifying this surgical precision for years. My modification comes from enhancing an easier recognition of endometriosis by using the aqua blue contrast technique. This allows me to perform wide and deep excisional removal using cold scissors and to reconstructively repair involved organs, such as the ovaries, bowel, bladder, and ureter, with fine suturing.
- Chapter 33: When Surgery Doesn’t Go as Planned
- Chapter 34: New Lives (Litteraly) after Surgery
- Chapter 35: Laser Surgery and Electrosurgery
- Chapter 36: Robotic Surgery
- Chapter 37: A Possible Link to Ovarian Cancer
I’ve stated that one of the most critical aspects of excision surgery is the confirmation of the diagnosis of endometriosis by a pathologist looking at a tissue sample under a microscope. The pathologist will also determine if cancer is present. Without this important step, Angela, a patient of mine from Mississippi, would probably still not know that she had cancer. Angela endured a barrage of endometriosis symptoms as a teenager: painful periods, killer cramps, heavy bleeding, fatigue, and painful bowel movements. When she was fifteen she underwent a CT scan, which revealed cysts on her ovaries. Her doctor told her they were nothing to be concerned about, so she didn’t let them worry her. But as the years went on, the symptoms worsened.
Support: Now and in the Future
- Chapter 38: The Endometriosis Foundation of America
The Endometriosis Foundation of America is a public health advocacy organization founded on four pillars: awareness, education, research, and effective intervention. I formed it with the support of several of my patients, and it was brought into the public eye in 2009 when Padma Lakshmi joined me as the co-founder. My vision for the EndoFound has been to bring awareness to endometriosis in the same way former first lady Betty Ford did for breast cancer. The subject of breast cancer was taboo before Mrs. Ford started discussing it. The five-year relative survival rate for female invasive breast cancer patients in the United States has improved from 75 percent in the mid-1970s to 90 percent today, due primarily to heightened awareness, early detection, and better treatments. Padma realized the powerful impact sharing her endometriosis battle could have for the millions of women around the world suffering with the disease, and she didn’t hesitate to join me in my mission. Every March or April, the EndoFound holds a weekend conference on endometriosis to educate the medical community including doctors, researchers, other medical experts, and medical students. It draws a higher number of attendees from all over the world than any other endometriosis conference in the United States. Our discussion topics include the latest techniques and technologies in surgery, diagnostic methods, nutrition and whole patient care, research, and policy.
- Chapter 39: ENPOWRing the Young Generation
- Chapter 40: Educating Doctors
- Chapter 41: A Cure
Using the term “cure” in relation to endometriosis is complicated. If, following excision surgery, a patient regains her quality of life with the elimination of pain, never requires pain medication, and is able to have one or more children, should we say she is cured? Or should we instead say that she has been treated successfully? No matter what terminology we use, the only thing that matters to me is that, after excision surgery, patients are able to live their lives the way they want to live them.
- Chapter 42: Support Groups
- Chapter 43: Finding the Right Doctor
Begin your search for an endometriosis specialist by reviewing your symptoms with your family doctor or another trusted medical professional. Ask them to assist you with recommendations, referrals, and follow-up care. Throughout the process, bear in mind the challenges some of my patients went through; learning from their experiences may help you determine if a doctor is the right one for you. Maintain very high standards when selecting your doctor. Endometriosis is a serious health issue that deserves only the best treatment.
- Chapter 44: Insurance