Can You Die of Endometriosis?
In the world today there are many diseases that have been known for centuries. However, they were not so well understood until recently. One such disease is cancer. Cancer was first described in 1735 by British physician William Osler (1729-1803). Since then it has become one of the most common causes of death worldwide. For decades, doctors had no idea what caused cancer or even how to treat it effectively. But now, thanks to new research and advances in medicine, we do know a little bit more about cancer. And we’re starting to understand endometriosis too!
Endometriosis is a condition where tissue from the lining of the uterus grows outside of the womb. This abnormal growth can cause symptoms similar to those of cancer. Most women with endometriosis will experience some degree of pelvic pain during their lifetime. Some women may experience severe pain during menstruation.
Other symptoms include infertility, heavy bleeding after childbirth, and painful periods.
Cancer is a deadly disease that kills over 100 million people every year around the world. A woman’s chance of dying from cancer is less than 1% each year. Yet, when it comes to endometriosis, the mortality rate is much higher: 20%. That means that for every 100 women diagnosed with endometriosis there will be only 20 survivors!
This is an alarming statistic considering there is still no known cure for the disease.
Why does endometriosis have a mortality rate that is comparable to cancer?
How do you Get Endometriosis?
Most women with endometriosis think they are infected with a sexually transmitted disease. However, endometriosis is not caused by an infection. Instead, it’s a condition that runs in families. A woman who has a relative with endometriosis is seven times more likely to develop the condition. So far, scientists have not been able to identify the exact gene that causes endometriosis. But that doesn’t mean there isn’t a genetic predisposition to the disease.
Even though most women with endometriosis are not sexually active, they can still develop the condition. At this time, researchers have not yet found a link between sexual activity and endometriosis.
There is also debate over whether or not an abortion increases a woman’s chance of developing endometriosis. Some studies show a direct link between the two while others do not. Most experts believe that the trauma of a surgical abortion may promote the spread of the disease but this theory remains unproven.
We know that women with a genetic predisposition are much more likely to get endometriosis.
But what exactly causes this condition?
How Does Endometriosis Spread?
The lining of the uterus is called the endometrium. Women with endometriosis have patches of endometrium in places other than the uterus, such as the ovaries, bowel, and bladder. No one knows for certain how these cells spread to these locations. However, there are several theories:
Bleeding during your period can spread the endometrial cells outside the uterus. This is the most widely accepted theory. This type of bleeding is called “metrorrhagia”. Many women with endometriosis have abnormal bleeding.
During a pelvic exam, doctors can detect small lumps of endometrial cells outside a woman’s uterus. These growths can sometimes be found on other organs in the pelvic cavity. It’s believed that these cells are pushed out of the uterus during a woman’s period and move around inside the pelvis. Over time, clusters of these cells form on other organs in the abdomen and pelvis.
There is not enough evidence to support or disprove this theory. However, it is known that women who have had an abortion have a greater chance of developing endometriosis. This has led some doctors to suggest that trauma of some kind may trigger the disease.
When Endometriosis is Diagnosed Wrongly
Studies have shown that up to 20% of women diagnosed with pelvic disease do not actually have endometriosis. In the past, if a woman had a lump on her ovary or some misplaced endometrial tissue, she was diagnosed with endometriosis. But this is no longer acceptable practice. A biopsy is needed to confirm the presence of the disease.
Some doctors believe that endometriosis is under diagnosed. Other doctors believe that it is over diagnosed and lumped in with normal aging changes of the reproductive system. There is no easy way to tell these two conditions apart. A biopsy can help, but not all women with endometriosis have the telltale signs of the disease.
What are the Symptoms of Endometriosis?
There is no set rule on what symptoms endometriosis will cause in each woman. Some women suffer from severe pain and others experience very little pain or none at all. The location of the disease also affects the type of symptoms a woman has.
Some of the most common symptoms of this disease include:
Chronic pelvic pain that comes and goes with your period and is most severe during your period
Pelvic pain after sexual activity, diarrhea or constipation, or passing a kidney stone
Infertility for no known reason
The most common symptom of endometriosis is pain. Most women who suffer from this disease experience severe menstrual cramps. But you may also have pain before and/or during your period, during bowel movements or passing urine, and especially after sexual activity. Some women report that the pain is so severe that they can’t do their normal daily activities.
Periods also tend to last longer and be heavier with endometriosis, especially before your period starts. You may experience clots and even faint if the pain is especially bad. Over time, some women become anemic because of this.
Some women report that they feel better (and even pain free) when they are pregnant. This is because the hormones in your body change during pregnancy and reduce the symptoms of endometriosis. Some women find that after several pregnancies their pain returns or gets worse.
Some women have no symptoms at all or have only minor ones. These women can go for years without knowing that they have the disease and that it is causing other issues in their body.
If you are experiencing any of these symptoms, you should see your doctor right away.
What Causes Endometriosis?
The cause of this disease is unknown. There are, however, theories that attempt to explain what happens.
One such theory is referred to as retrograde menstruation. Normally, the cells that line the inside of your uterus flow out of your body during your period. But, it is believed that in some women some of these cells travel back up into the fallopian tubes and then into the abdomen. There, the cells continue to act as if you are pregnant by building tissue.
While this tissue has no place to go, it continues to build up and may form cysts and lesions. These cysts and lesions cause the pain associated with this condition.
Another theory is that the pancreatic enzymes that help you digest your food may also attack other cells in your body. These enzymes may attack the cells in your uterus and cause them to behave in an abnormal fashion.
What are the Types of Endometriosis?
Endometriosis can be categorized in several ways. Knowing what type of endometriosis you have, may help your doctor in selecting the best treatment plan for you.
The three main types of endometriosis are:
Peritoneal – This is by far the most common form of the disease. In peritoneal endometriosis, the cells from the lining of your uterus grow on the walls of your abdomen. This can cause pain and scarring in this area and is associated with infertility.
Retrograde – This occurs when cells flow into your fallopian tubes and create lesions there. This may cause infertility because the eggs may not be able to travel from your ovaries to your uterus. It can also cause a blockage of the tube and is sometimes associated with pancreatitis.
Vaginal and Vulvar – In this form of endometriosis, cells from the inside lining of your uterus grow in and around your vaginal area and even on the vulva. This can cause pain during and after sexual activity.
Why is Endometriosis So Hard to Diagnose?
There are several reasons why this disease is often misdiagnosed or goes undiagnosed:
Symptoms can be mild and come and go. For this reason, many women tend to dismiss their symptoms as just another quirk of their menstrual cycle. This makes it even more difficult for doctors to diagnose the problem.
Some symptoms, such as fatigue, can be caused by many other conditions. For this reason, your doctor may not even suspect endometriosis and may simply treat you for another condition.
The only way to definitely diagnose endometriosis is through a visual inspection of your pelvic area during an exam. Your doctor will do a rectal exam to check your ovaries and fallopian tubes. A pelvic exam will help her/him see any evidence of scarring in or around the uterus or other pelvic organs.
If your symptoms are mild or come and go, your doctor may choose to monitor you instead of performing a diagnostic surgery. She/he may choose to perform diagnostic surgery if your symptoms are more severe or if you are showing other signs of infertility.
What is the Treatment for Endometriosis?
Treatment plans for endometriosis will vary depending on the severity of your disease. The two main goals of treatment are to control your pain and to prevent or reverse any damage done to your reproductive organs.
Some women are able to manage their pain by taking birth control pills or using a vaginal cream or suppository. Other women may need stronger pain medication, such as narcotics, for a short period of time. Still others may benefit from a short course of hormonal treatment.
Severe cases of endometriosis may require surgery. During surgery, your doctor will remove lesions and scar tissue in your pelvic region. In some cases, surgery may be used to reverse any blockages in your fallopian tubes or to remove lesions or scarring in your ovaries.
Sources & references used in this article:
Pathogenetic mechanisms of deep infiltrating endometriosis by C Tosti, S Pinzauti, P Santulli… – Reproductive …, 2015 – journals.sagepub.com
Über die Klinik der Endometriosis externa by A Turunen – Acta Obstetricia et Gynecologica Scandinavica, 1939 – Taylor & Francis
Questioning patients about their adolescent history can identify markers associated with deep infiltrating endometriosis by C Chapron, MC Lafay-Pillet, E Monceau, B Borghese… – Fertility and sterility, 2011 – Elsevier
Endoscopic treatment of deep infiltrating endometriosis (DIE) involving the bladder and rectosigmoid colon by A Langebrekke, O Istre, B Busund… – Acta obstetricia et …, 2006 – Taylor & Francis
Ultrasound mapping system for the surgical management of deep infiltrating endometriosis by C Exacoustos, M Malzoni, A Di Giovanni, L Lazzeri… – Fertility and sterility, 2014 – Elsevier
Anatomical distribution of pelvic deep infiltrating endometriosis and its relationship with pain symptoms by DAI Yi, JH Leng, JH Lang, X LI… – Chinese medical journal, 2012 – journals.lww.com
Laparoscopic resection of intestinal endometriosis: a 5-year experience by PAA Ribeiro, FC Rodrigues, IPA Kehdi… – Journal of minimally …, 2006 – Elsevier