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15 Myths about Endometriosis

From the Endometriosis Articles List

There is so much conflicting information about endometriosis. How do I know what is true?There is so much conflicting information about endometriosis. How do I know what is true?


Endometriosis is a confusing and complex condition that is misunderstood by many. There are a lot of theories about it and a lot of misconceptions, too. If you have been diagnosed for endometriosis, you'll want to know as much as possible so you can choose the right physician and treatment option for you.

Here are some of the common myths about endometriosis that have been shared over the years. Knowing what is fact or fiction about endometriosis can help you get started on your research about endometriosis.

1. Only younger, career women get endometriosis.

In the past, it was believed that only women with careers got endometriosis. There has also been some belief that only women in their 30's and 40's get endometriosis, and teens and older women never have endometriosis. Unfortunately, any woman of any age, working or not, can have endometriosis. Endometriosis does not discriminate by age, race, job, or any other variable. It has even been found in infants and rarely in men who have undergone cancer treatment.

2. Endometriosis can be prevented.

To date, there are a number of theories about where endometriosis might come from and many have differing opinions. Since what causes endometriosis is unknown, there is no way for women to prevent endometriosis. In addition, women don’t cause themselves to have endometriosis, and it is not contagious.

3. Endometriosis can be cured with hormones or medications.

There are number of medications and hormonal treatments which can treat endometriosis. Though they may cause endometriosis to subside or go into a remission type state, they do not remove the endometriosis implants. As a result, symptoms can return once treatment stops and the endometriosis plumps back up again.

4. Endometriosis only affects pelvic organs.

While endometriosis may primarily be found in the pelvic region, it has been found as far away as the eye and brain. Endometriosis outside the pelvic region is more rare, but it can happen.

5. Endometriosis is easily diagnosed.

Endometriosis is actually hard to diagnosis, and for some women it takes many years before they receive an accurate diagnosis. A physician can make an educated guess about an endometriosis diagnosis based on symptoms. On the other hand, ultrasound, CT scans, and MRI tend not to show endometriosis. Unless there are larger nodules in specific areas, a physical exam also is not helpful for diagnosis. Even visual examination during surgery may not be completely accurate. Instead, the only current definite way to diagnosis endometriosis is through surgery followed by pathology for confirmation.

6. Any gynecologist can effectively treat endometriosis.

Though gynecologists should know a bit about endometriosis, most receive very little training and are not experts in endometriosis. To learn about the best treatments and receive the best surgical results, women with endometriosis should try to find a doctor who has chosen to specialize in treating endometriosis. Finding an endometriosis specialist can be instrumental in successful treatment for women with endometriosis.

7. Pregnancy will cure endometriosis.

Unfortunately, there really isn’t a cure for endometriosis. For some women, pregnancy may cause endometriosis to subside, possibly due to the high progesterone levels. And in some cases, symptoms may seemingly disappear forever, though for many symptoms return after childbirth and the return of menstrual cycles. For other women, pain and symptoms continue throughout and following pregnancy. Because pregnancy is not a cure for endometriosis, no woman should try to conceive as a treatment option for endometriosis.

8. Endometriosis always causes infertility.

Though endometriosis may cause fertility issues, having endometriosis does not guarantee a woman will be infertile. Women with endometriosis should talk to their doctor about fertility concerns. There are steps that can be taken to try to help prevent future fertility issues, but women should not rush to have a child in case there might be fertility issues in the future.

9. Endometriosis doesn’t hurt that badly and only causes pain during periods.

Women with endometriosis can have pain every day, regardless of the time of the month or where they are in their cycle. The pain can also be extensive enough that it can be debilitating and require the use of prescription pain medications. Women with endometriosis can have intense pain that negatively affects quality of life and makes it difficult to participate in normal activities.

10. Only extensive endometriosis causes pain.

There is no connection between pain and the amount, or stage, of endometriosis. Women with extensive endometriosis may be asymptomatic, while those with only small amounts of endometriosis may have debilitating pain. Instead of the stage of endometriosis, where the endometriosis is located and how individual women react to it is more likely to affect pain levels. As long as there is endometriosis there can be pain and symptoms, but just because there is endometriosis does not mean there will be pain and symptoms.

11. Endometriosis always gets worse.

While endometriosis may worsen for some women over time, in others it may spontaneously disappear or remain unchanged. Women with endometriosis should seek treatment, but decisions about treatment should not be made in a panic. There usually is not a race against time, and women can take time to learn about their diagnosis and options.

12. Endometriosis always comes back after treatment.

Whether or not endometriosis recurs can depend on a number of factors. These can include the type of treatment, surgeon’s skills, and how the woman’s body reacts. Rather than endometriosis coming back, it can be that treatment didn’t remove the implants or not all of the implants were removed. For example, many medical treatments cause endometriosis to subside but do not eradicate it, so once treatment ends the implants can plump back up again. During surgery, a surgeon could miss implants which could then grow and cause symptoms. As long as endometriosis exists, there could be symptoms despite treatment.

13. Women with endometriosis must have a hysterectomy and oophorectomy to be cured.

A hysterectomy is not a cure for endometriosis. Likewise, neither is an oophorectomy. Women should not automatically have their uterus and ovaries removed if they have endometriosis as endometriosis can exist even without them. Instead of removing the reproductive organs, the key is removing the endometriosis implants.

14. Menopause cures endometriosis.

The decreased levels of estrogen during menopause can help minimize endometriosis symptoms, but not necessarily. There are women in both natural and surgical menopause who have endometriosis symptoms.

15. Women with endometriosis can’t take HRT.

Because estrogen is the fuel for endometriosis, there is some belief that women with an endometriosis diagnosis should not use hormone replacement therapy (HRT) during menopause. The decision to use or not use HRT should be made on a case by case basis, taking into consideration that there can be some serious health risks following an oophorectomy for benign reasons. Endometriosis and HRT can be complicated, and there is no black and white answer. Some women can use it with no endometriosis problems, while others cannot.


This content was written by staff of HysterSisters.com by non-medical professionals based on discussions, resources and input from other patients for the purpose of patient-to-patient support.

03-30-2015 - 12:59 AM


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