Endometriosis is a disease where the lining of the uterus (cells from the lining of the uterus or implants), known as the endometrium, grows outside of the uterus. This lining is sensitive to estrogen, so during fluctuations of hormones during your menstrual cycle, it can bleed inside the body and cause swelling and irritation. This can cause considerable pain and other symptoms.
As with many diseases involving the female reproductive system and menstruation, there's been a good deal of speculation about endometriosis throughout the years, and numerous myths have arisen around the condition. Here are some of those myths — and the truth behind them.
1. Myth: It Is Totally Normal to Have Severe Pain With Your Periods.
While not everyone with endometriosis has pain, some do, and it can be severe. This kind of severe pain is beyond the mild cramps many people expereince during a normal period.
With endometriosis, the location of the pain depends on the location of the uterine lining growing outside of the uterus. For example, if it’s growing on your bowel, you might experience pain with bowel movements.
This pain is most common just before and just after your period, according to the American College of Obstetricians and Gynecologists (ACOG), but it can occur at any time in your cycle and even when you’re having sex. The pain of endometriosis is considered to be chronic pain.
2. Myth: Teens Do Not Have Endometriosis.
It was once believed that endometriosis was a disease of older white women. The truth of the matter is that anyone who has periods can have endometriosis. About 1 in 10 women have endometriosis, but many are not diagnosed until they are in their 30s or 40s, according to ACOG.
In fact, many people who have endometriosis say the pain started in their teen years, but no one took their concerns seriously or was able to diagnose it until they were older. Once teens enter treatment and get diagnosed, they often have good outcomes from that treatment.
3. Myth: If You Have Endometriosis You Can’t Get Pregnant.
The good news is there are women with endometriosis who are able to conceive and carry a pregnancy to term, according to a 2012 review. Some of these women do so with little to no interventions, but other women use a variety of fertility treatments, such as intrauterine inseminations (IUI), in vitro fertilization (IVF), and more.
It is true that there is an association between infertility and endometriosis, but it is myth that all women with endometriosis are unable to get pregnant. According to the 2012 review, about 30-50 percent of women with endometriosis deal with infertility, which is defined as trying to conceive a child for one year with no pregnancy. Interestingly enough, we don’t know why endometriosis causes infertility or how it works, but there are several theories.
4. Myth: If You Have Endometriosis, a Simple Surgery Will ‘Cure’ It.
Surgery is used to help diagnose and relieve the pain caused from the sites of endometriosis, known as implants, but surgery is not a cure. Some women get temporary relief from the surgery, only to have the implants reestablish themselves after the surgery.
If you are diagnosed with moderate or severe endometriosis, this surgery may also help you get pregnant, particularly if you have the excisional surgery, where the implants are removed.
Some studies show that the benefits to fertility are short-lived, lasting only about two years, according to ACOG. One of the best forms of treatment for endometriosis is hormonal therapy, though this often suppresses ovulation and makes pregnancy nearly impossible. Other therapies are available as well.
5. Myth: Menopause Cures Endometriosis.
uYo might think that once you've gone through menopause and stop menstruating that the symptoms of endometriosis would go away. In fact, endometriosis is rarely diagnosed after menopause, but it can still cause symptoms and be problematic in those who have it.
If you are still having problems with pain and other symptoms of endometriosis after menopause, you should talk to your doctor. Usually, surgery is recommended at that point, followed by medication therapy for reducing pain, typically with nonsteroidal anti-inflammatory drugs (NSAIDs).
The Bottom Line
With these and other myths surrounding endometriosis, be sure to talk to your doctor to get the most up-to-date information possible on the treatment of your disease. Because this is a disease that can span your reproductive life cycle, you may need different treatments at different points of the disease.
It is also important to talk to other women who are living with endometriosis. Finding a community can drive home the realization that you are not alone in living with the condition, and can help you move beyond surviving to thriving.