Endometriosis Photo Gallery:
Endometriosis happens when tissue normally found inside the uterus grows in other parts of the body. It may attach to the ovaries, fallopian tubes, the exterior of the uterus, the bowel, or other internal parts. As hormones change during the menstrual cycle, this tissue breaks down and may cause painful adhesions, or scar tissue. More than 5.5 million American women have symptoms of endometriosis.
Consider these statistics:
- An estimated 176 million women worldwide suffer with endometriosis, according to an article in the Journal of Endometriosis and Pelvic Pain Disorders.ii
- Thediseasetakes,onaverage,nearlytwelveyearstodiagnoseintheUnit- ed States and roughly eight years to diagnose in the United Kingdom, according to a survey published in the journal HumanReproduction.iii
- The American Society for Reproductive Medicine says endometriosis can be found in up to 50 percent of infertilewomen.iv
- AnarticleinHumanReproductionstatesthatdirecthealthcarecostsofen- dometriosis and indirect costs of time lost from work due to endometri- osis amount to an estimated $110 billion annually in the UnitedStates.v
- According to a recent Finnish study that appeared in the Journal of Pedi- atric & Adolescent Gynecology, one-third of girls ages fifteen to nineteen were found to suffer severe menstrual pain, of which 14 percent were consequently regularly absent from school orhobbies.vi
Numerous women have endometriosis but don’t know they have it. And those who do know they have it often don’t talk about it.
Why the silence?
There’s the taboo that still exists against anything involving a woman’s menstrual period; the exhaustion of being repeated- ly misdiagnosed; the stigma of always being sick—the list goes on, and it will be discussed in greater detail in subsequent chapters.
So what is endometriosis? My description will be simple and com- prehensive, so much so that any person, even those who are ignorant about how the female body works, will understand it.
Endometriosis is defined as the presence of endometrial-like tissue outside of the uterine cavity. By “endometrial-like tissue,” I mean tissue that greatly resembles the endometrium, which is the interior lining of the uterus that grows every month to prepare the uterus for the implanta- tion of a fertilized egg. Endometriosis causes pelvic pain in reproductive
-age women and adolescent girls and is associated with heavy menstrual periods, clotted flow, gastrointestinal symptoms, fertility problems, and a tremendous loss of quality of life.
Throughout the ancient and modern history of endometriosis, doc- tors and researchers have had different theories and opinions as to what causes it. Just recently we learned that endometriosis can be present at birth; it was found in some newborn fetal autopsies and was attributed to the fetuses’ exposure to elevated levels of maternal pregnancy hormones, namely estrogens and progesterones. The belief is that although a female may have endometriosis at birth, it doesn’t activate until her first men- strual period. I believe the disease can be inherited, as you will read about in the chapter on genetics. Many also believe, that the disease can be caused by retrograde menstruation. While this is a controversial view, my thirty years of clinical observation suggests that retrograde menstruation must play a triggering role in the development of endometriosis, par- ticularly through the gene material in the stem cells. It is likely that the disease may actually occur differently in different women, allowing for multiple hypotheses, which is why I offer the opinion of Dr. Harry Reich in Chapter 39. Research investigations have yet to provide clear answers. “Retrograde” means “moving backward.” Retrograde menstruation refers to a woman’s menstrual blood flowing back into her body during her period. Let me explain further. Ovulation—the hatching of eggs from the ovaries—occurs in a woman’s body each month. Fourteen days later, if there is no pregnancy, she has her menstrual period, during which her body naturally sheds the endometrium. If the menstrual flow proper- ly exits from her body, the flow carries the endometrium with it through the cervix, the opening of the uterus that connects to the vagina. The cervix is small, strong, and tight; it opens to allow menstrual blood out, but it also keeps a baby in the uterus for nine months. When the labor starts, uterine contractions dilate the cervix to allow the baby into the
vaginal canal for the birthing process.
If the menstrual flow does not exit as it should, the menstrual blood may leak back into the body through the natural openings in the fallopian tubes. Where does menstrual blood go? It implants in areas outside of the uterus in the pelvis and creates an abnormal growth of cells: endometriosis cells with inflammation. That’s not a good thing, and it may get worse. The body’s immune system desperately and futilely tries to eliminate these dis- located cells, which results in deeper inflammation with new blood vessels and stem cell activity resulting in deep and thick scar tissue. As a woman’s hormones (estrogen and progesterone) change during her menstrual cycle, the implants (which are also called lesions or nodules) respond to the hormonal fluctuations by growing. In other words, estrogen and progesterone are feeding the beast, serving as food for the implants. Unfortunately, unlike the endometrium that naturally leaves the body, there is no way for the implants to exit the body, so the inflammation continues.
This is endometriosis—menstrual periods that are literally stuck in- side of a woman’s body. The implants can grow deep and wide, spreading and clinging to her uterus, appendix, rectum, ovaries, intestines, leg nerves, and other parts of the pelvic region. They are like leeches that attach to, reproduce on, and grow on whatever internal organs they find. They are similar to a slow-growing cancer that invades the organs in the pelvis. In some rare cases, they can spread to the diaphragm, lungs, kid- neys, or brain.
The disease always causes inflammation, which can lead to adhe- sions, scarring, internal bleeding, bowel or urinary dysfunction, consti- pation, painful intercourse, and infertility. The physical pain can be un- bearable, which inevitably leads to psychological pain. A woman’s career may suffer. Relationships with loved ones may become strained. She may have to miss a lot of school, or even drop out. This disease threatens to become a woman’s identity, ruling every phase of her life.
Endometriosis, however, is a treatable disease. Some of my patients say that the deep-excision surgery I performed on them “cured” them. Although they may feel as though they are cured—because I was able to remove all their endometriosis and, as a result, transform their lives to the extent that they are pain-free and happier than they have been in many years—there is no guarantee that the disease won’t return at some point. The hope is that it won’t, but it could. Endometriosis is not like a bacterium you can eradicate with antibiotics or a virus you can prevent with immunization. It’s something that can continue to happen to some women’s bodies throughout their lives, and it needs to be recognized, diagnosed, and eradicated by excisional removal each time.
Whether one believes that the disease is curable or incurable, it is at the very least treatable through deep-excision surgery, and many women who undergo the surgery can reclaim their lives and live pain-free, which is a significant advancement from days of old.
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The Rose Project Research Team
Peter K. Gregersen, MD, Principal InvestigatorDr. Gregersen is Head of the Robert S. Boas Center for Genomics and Human Genetics and Professor, Molecular Medicine and Medicine at Hofstra North Shore-LIJ School…
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