If you suspect you have endometriosis or were recently diagnosed, you likely have a lot of questions about who it affects and why. To start finding the answers, simply look through this guide on the prevalence, risk factors, and causes of this condition.
Prevalence of Endometriosis
More than 11% of women develop endometriosis at some point in their reproductive years. That means about 176 million women across the world are currently living with this condition. Many of those individuals may not yet have an official diagnosis since it requires laparoscopic surgery to confirm. Their doctors might offer treatment options anyway in an attempt to resolve infertility and reduce their symptoms.
Age of Onset
Endometriosis is most common in women age 30 to 40, but it can start to develop as soon as your first menstrual cycle. The earliest this condition has been diagnosed was 11 years old, though most patients report that their symptoms started in the teen years.
Since menstrual cycles are typically erratic and difficult to adjust to, early complaints are often disregarded, which delays the diagnosis. Menstrual pain should never feel severe nor last longer than the first two days of your period, however. If it does, then you can work with a doctor to track down the cause and find a suitable treatment.
Length of Time Before Diagnosis
Many people do not receive an official endometriosis diagnosis for around six to ten years after their symptoms start. This is especially true if the symptoms began during the teenage years, which is why most women are first diagnosed in their 30s and 40s. In the early years, doctors often chalk it up to teens needing to get used to the period pain and cramping.
Endometriosis is also difficult to diagnose because its symptoms mimic other reproductive disorders. Doctors may try to rule out those conditions first since it is only possible to see endometrial lesions through laparoscopic surgery. Imaging tests, like x-rays and ultrasounds, often fail to show the growths clear enough to make an accurate diagnosis, if at all.
Delays in getting a diagnosis and treatment can impact your health for the long term. As the uterine lining escapes the uterus and flows into the abdominal cavity, it can impact the function of many organs, including your bladder, bowels, and appendix. As time goes on, the lesions continually grow in size and spread across the abdominal cavity.
During your period, the endometrial growths respond to the hormones as if they were in your uterus. In response, they swell up and shed blood, causing it to flow into your pelvic area. The swelling can put pressure on your organs and the blood irritates surrounded tissues.
Endometrial tissue can also block your fallopian tubes, preventing eggs from traveling in the right direction. The eggs may even have a hard time exiting the ovaries, which increases your risk of developing painful cysts. If the cysts put too much weight on one side of the ovary, it could twist and cut off the blood flow, which is call ovarian torsion. If that occurs, you will likely need immediate surgery to remove the cyst and secure your ovary in place.
To prevent these complications, it is important to see a doctor as soon as you start experiencing symptoms of endometriosis. Even if they cannot immediately diagnose the condition, you can talk with them about treatments to help minimize your symptoms during the wait.
Endometriosis Risk Factors
Women with endometriosis often have many similar risk factors show up in their medical histories. Using those risk factors, doctors can identify who might develop this condition in the future and watch them closely for symptoms. Here’s a look at the most common risk factors they watch for.
Menstrual Cycle Characteristics
The unique characteristics of your menstrual cycle can reveal if you are at a higher risk of developing endometriosis. Short cycles of 27 days or less, for example, and periods that last a week or longer are both quite common in those with this condition. Heavy periods are also a sign that you might face an increased risk.
Structural abnormalities in your uterus and fallopian tubes could increase your risk of endometriosis. If you have a uterine septum, for example, the defect could make it easier for endometrial tissue to move through the fallopian tubes. Each month, the process repeats, rapidly filling your abdominal cavity with lesions.
Although researchers do not quite understand the link, they have found that endometriosis runs in families. So, if your grandmother, mom, or aunt has been diagnosed, your risks are definitely higher than they would be otherwise. How much of a risk it poses is up for debate, however.
Waiting until you are financially stable and in a good place mentally before having kids is always a good idea. But, you should know that it might increase your endometriosis risk. This is especially true if you have used oral contraceptives in the past.
How Understanding Risk Factors Improves Your Quality of Care
When you go to the doctor, they will review your personal and family medical history. This allows them to assess your risk for many different conditions, including endometriosis. Then, if any symptoms arise, they can investigate further with confidence that they are on the right track.
If you have many risk factors and are not a good candidate for surgery, or just need an immediate solution, your doctor might try medication to reduce your symptoms. With that move, they can make a tentative diagnosis if the medicine achieves the desired results.
You can then receive an exceptional quality of care and take back control of your life without the need for confirmation through laparoscopic surgery. Of course, that option may still be on the table if your symptoms worsen and you need the lesions removed — or need to have a full hysterectomy performed.
Most Common Causes
Researchers are attempting to go beyond risk factors to identify actual causes that lead to the development of endometrial growths. They have come up with a number of potential causes, such as:
Poor Immune System Function
When the immune system is in good working order, it will do its best to target and destroy tissue that ends up in the wrong areas. So, as endometrial tissue ends up in the abdominal cavity, immune cells hunt down the offending growths and get rid of them. Poor immune function can seriously impede that process, leaving the lesions in place to thrive and grow. Then, as your system gets overwhelmed, the immune system does not have a chance to catch up.
Your body relies on estrogen to create a thick uterine lining that will support the growth of a fetus. As estrogen levels increase beyond the norm, as is common with certain health conditions and medications, the lining often thickens even more. This can result in the lining evacuating through the fallopian tubes and into your abdomen. Then, the estrogen will further support its growth and spread, especially if left unresolved.
If you have recently had abdominal surgery, like a c-section, there is a chance that the endometrial tissue migrated out of your uterus. This can happen while making the incision, manipulating the uterus, and suturing you back up. And it is virtually undetectable at the time. Only once the tissue creates growths inside your abdomen or even in the scar can you tell that something is wrong.
As researchers work to pinpoint the cause of endometriosis, one thing is clear: This condition happens when the uterine lining ends up in the wrong place. Since it is really good at adhering to other tissues, it can grow and thrive nearly anywhere, potentially leaving you in serious pain and dealing with infertility.
Even when it does not cause debilitating symptoms, you should reach out to a doctor for care. Symptoms can arise at any point as the lesions grow in size and number, especially if they start to affect nearby organs.
How to Prevent Endometriosis
Even with their understanding of the risk factors and causes, researchers are not 100% sure why endometriosis affects some women and not others. The various factors often show an increased likelihood of developing this condition, but they do not predict it. So, without a clear singular cause, it is impossible to completely prevent it since so many factors contribute to its development.
You do not have to just leave it to fate, however. Since high estrogen levels are a strong contributing factor, it just makes sense to do all you can to lower them. Seemingly insignificant lifestyle changes can make a big difference in those levels.
To take the first steps, just:
- Commit to at least four hours of exercise per week
- Avoid eating too many estrogen-rich foods, like soy
- Reduce your weight to reach a normal BMI
- Decrease your alcohol intake or eliminate it altogether
- Skip the caffeinated beverages or keep it to one a day
If you are on hormonal birth control, it is also wise to talk with your doctor about switching to one with low estrogen levels. You can even go with a progesterone-only birth control if deemed suitable for your needs.
When to Reach Out for Help
Endometriosis does not always cause symptoms. But when it does, they can severely impact daily life and derail your future goals. Severe pelvic pain and infertility, for example, are often devastating, leading you to quickly seek treatment.
Although there is no cure, your doctor can help decrease your pain levels and other symptoms using a variety of treatments. They can even surgically remove the lesions in hopes of resolving your infertility issues. You may need to try a couple of different things before finding the one that works best for you.
So, don’t just live with the pain or give up on your dreams of having a child, reach out to a doctor right away to discuss your symptoms and figure out what’s going on.
For more information, please visit our complete Endometriosis Guide.