what is endometriosis

Why is Endometriosis in Fetuses Important?

14180 views

Inaccurate theories about how and why endometriosis develops are widely accepted by medical practitioners, despite much evidence against them. Acceptance of these theories leads to the perpetuation of medical therapies that do not work. It is important to understand the origins of endometriosis in order to move forward and develop effective treatments for this devastating disease.

Endometriosis and Sampson’s Theory

Endometriosis is defined as the presence of endometrium-like tissue outside of the uterine cavity. Many medical practitioners and lay press oversimplify this to state that endometriosis occurs when the lining of the uterus is found outside the uterine cavity. However, there are many publications enumerating the differences between endometriosis lesions and the endometrium found inside the uterus. Evidence for this goes back at least to 1981, and possibly earlier, and research into these differences is still ongoing. However, the common perception that endometriosis is merely endometrium outside of the uterus persists.

One prominently cited theory as to how endometriosis develops is known as Sampson’s theory. This theory suggests that retrograde menstruation, menstrual blood flowing backwards (away from the uterus) through the Fallopian tubes towards the pelvic cavity, deposits fragments of endometrium into the pelvis, which can then implant and grow into lesions.

There are numerous problems with this theory. First of all, there is no evidence that endometrial cells in the peritoneal fluid can attach to the lining of the pelvis (the peritoneum), and in addition, endometrial cells are not commonly present in peritoneal fluid. Furthermore, as stated earlier, there are many differences between the endometrium inside the uterus, and endometriosis lesions. In addition, 90 percent of women have retrograde menstruation, but only approximately 10 percent have endometriosis. Sampson’s theory cannot explain the presence of this disease in fetuses, in men, and in girls who have symptoms with the onset of puberty or even prior to puberty. And it cannot explain the presence of endometriosis in areas outside of the pelvis, such as the lungs and skin.

Alternate Theories – A Fetal Component

Alternate theories that fit better with the available evidence have been proposed, including metaplasia (changing of one cell type into another cell type), developmental defects (also known as Mullerianosis), genetic factors and environmental factors. However, no single theory has been proven to be correct, and most likely a combination of various influences contribute to the development of the disease. According to the current evidence, there is most likely some embryological component. The theory of Mullerianosis explains the development of endometriosis as endometrial tissue that was misplaced during fetal development, that later develops into endometriosis lesions. Evidence in support of this comes from the fact that endometriosis has been found in female fetuses with the same incidence as in women, about 10 percent.

The Persistence of Sampson’s Theory – A Safety Net for Inadequate Treatment

Why has Sampson’s theory continued to be so persistent despite all the evidence to the contrary? First, no alternative theory has been sufficiently proven enough to displace it, although certainly enough evidence against it exists that it ought to be displaced. Second, most doctors who treat endometriosis do not specialize in the disease, and the science behind its development is probably not something they have much interest in.

It is damaging to endometriosis patients to have Sampson’s theory continue to be accepted despite evidence to the contrary. It gives gynecologists a reason not to strive for complete removal of the disease from all organs, because there’s no point in trying to remove all of it, if it will just be re-implanted with the next period. Sampson’s theory provides justification for the high recurrence rates observed from surgeons who do not specialize in treating endometriosis.

However, surgeons who specialize in it, who carefully excise all disease, have shown that it is possible to have low recurrence rates following complete excision. This requires not only the knowledge of all the possible visual appearances of endometriosis, but the surgical ability to excise disease from areas most gynecologists cannot, such as bladder, ureters, intestines, or diaphragm.

Sampson’s Theory and Medications that Prevent Menstruation

Acceptance of Sampson’s theory gives pharmaceutical companies an excellent tool to convince doctors to prescribe medications that prevent menstruation. If Sampson’s theory is correct, then any hormonal treatment that stops women’s periods will treat endometriosis. Several drugs that are currently on the market can stop periods—Lupron and similar drugs, by inducing a menopausal state, and birth control pills, used continuously. However, as would be expected, since Sampson’s theory is not correct, these medications have never cured endometriosis. Some patients may experience temporary relief of symptoms, especially when the symptoms are primarily connected to having periods, but hormonal medical therapies do not treat the underlying disease.

The Origins of Disease Matter

Though debating disease origins may seem like an arcane point, not relevant to most endometriosis patients on a daily basis, it is highly relevant because it is so linked to the inadequate and ineffective treatment most patients receive. In order to truly move forward and make progress in how this disease is treated, wider recognition of Sampson’s theory as fatally flawed must occur. If endometriosis is present in the fetus, then it is an entirely different disease than one of retrograde menstruation. Understanding this is critical for better treatments options.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

lunar caustic, CC BY-SA 2.0, via Wikimedia Commons.

This article was published originally on October 2013. 

Endometriosis Awareness Month: A Wish Noted

2504 views

Everyone who lives with endometriosis as a patient, or as a family member, partner, or friend of a patient, has something (or sometimes many things) they wish for, with respect to this disease. In March, as part of their Endometriosis Awareness Month activities, The Endometriosis Network Canada asks people from across Canada to send them their wishes with the hashtag #awishnoted, which is an anagram for “what is endo?” These wishes are displayed as a digital “wall of wishes,” and as an actual physical wall at the Endomarch Canada event in Toronto. Wishes range from wanting better medical care, to wishing for a baby, to wishing for continued strength while dealing with endo.

I also have an endometriosis wish, and it is a big one. But as William Arthur Ward said: “If you can imagine it, you can achieve it.” My wish starts with all teenagers being educated about the signs and symptoms of endometriosis, so that people would be aware of the possibility of endometriosis as soon as they start developing symptoms. The primary care practitioners would also be educated about endo, and would refer to a specialist when they suspect the disease.

The specialist care would be delivered at a multidisciplinary centre of expertise in endometriosis. This care would include the appropriate medical expertise, such as skilled excision surgeons, and other medical specialties as required, such as urology and gastroenterology. In addition, endometriosis patients would receive care from women’s health physical therapists and nutritionists, and other alternative/complementary medical practitioners as needed. Pain management specialists would also be an option for care if required. Counselors would be available to help patients deal with the emotional impact of the disease, and patients would be referred to support groups, for peer support from others who are dealing with endometriosis.

As if that isn’t enough to be wishing for, I also wish that the general public had a much greater awareness of endometriosis, how devastating it can be, and how wide-reaching the emotional effects are. If this were the case, in addition to receiving excellent healthcare at a centre of expertise, endometriosis patients would also receive better support from people in their daily lives.

However, the reality of living with endometriosis today is far different from this vision of what could be. In my work with The Endometriosis Network Canada, I am privileged to interact with many endometriosis patients. They are all incredibly strong people who continue to fight for a better quality of life, on a daily basis, despite all the obstacles around them. Many of them fought for years to obtain a diagnosis, usually hearing along the way from doctors “there is nothing wrong with you,” or “your problems are not physical, they are in your head,” or “I can’t/don’t know how to help you.”

Even once endometriosis has been diagnosed, often the care women have received is horrifying. I have talked to women who have been butchered by inept surgery, suffered complications that could have been avoided, or who have had unnecessary hysterectomies during surgeries that are supposed to treat endometriosis, where all or most of the endometriosis was left in the body but healthy organs were removed. Many endometriosis patients have been refused care by specialists, for reasons unknown. Some have been offered anti-psychotic medication or sedatives instead of painkillers, as a “treatment” for endometriosis or chronic pain. My vet once commented to me that animals receive better care than women with endometriosis.

For many endometriosis patients, they have no support network around them. They may have partners, family, and friends who do not understand the medical effects of endometriosis, and definitely do not understand the emotional consequences of living with chronic pain and other debilitating symptoms. Some have lost jobs, partners, and custody of their children as a consequence of their disease. Many are depressed and anxious, or worse, suicidal.

This state of affairs is not ok. We are capable of doing more for people with endometriosis, except that not enough people care about the current state of affairs for things to start changing. It is hard for me to imagine that if most people really knew about what life is like for many people with endometriosis, they would be ok with abandoning over 176 million women worldwide to this kind of suffering and medical mismanagement.

This is why March, as Endometriosis Awareness Month, is important. Most people with endometriosis face the task all year long of educating those around them about their disease. However, in March, endometriosis patients come together, and make their voices heard even more loudly, as a united group. We are tired of suffering and being ignored. We want people everywhere to understand what endometriosis is and why it is a major healthcare crisis, and we want people to care enough to start demanding the changes in our education system, in our medical education system, in our insurance systems, and in our healthcare delivery systems, that would make my wish become a reality.

My Battle with Endometriosis and Migraines

8163 views

Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

 

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up.  I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur.  I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end.  I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst.  I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.