Myth-Busting Endometriosis

Many of these cases go undiagnosed and untreated, leaving those affected to believe that what they are experiencing is ​“normal”.

We sat down with Ivinson Medical Group OBGYN, Dr. Derek Ewell to get the facts and find out what patients can do to advocate for their own health. 

Q: What is Endometriosis?

A: Endometriosis is a condition where cells similar to the lining of the uterus, get misplaced outside of the uterus. That may be in the muscle of the uterus or somewhere in the abdomen itself. Once misplaced, or located outside of the uterus, the cells still do a similar function that they would do inside the uterus. Every month they’re going to build up a lining and then they’re going to bleed. That bleeding and that stretching is what causes the discomfort that patients experience and it can even cause a scarring process that leads to long-term discomfort.

Q: How does it affect the body?

A: If you have cells in an abnormal spot that are going through their monthly cycle, just as the lining of the uterus is, it drastically can impair someone’s quality of life by causing significant abdominal pain. That abdominal pain is usually from blood in the belly or from those cells expanding, and any sort of expansion of the belly can cause significant cramping and discomfort. If those cells do release blood, there is always a chance that they are scarring in the abdomen, which is usually what causes a lot of women’s pelvic pain related to the endometriosis. 

Q: How does it happen?

A: There’s three theories on how it happens:

1. One of those is retrograde menstruation. Instead of the normal vaginal bleeding some of that blood is theorized to go out of the fallopian tubes, into the abdomen and those cells attach somewhere, rather than the normal processes of dissolving them.
2. Another theory is called Metaplasia. Metaplasia is where a cell has the ability to turn itself from one cell type to another cell type. This is the theory on how men can get endometriosis.
3. The other theory is like vascular spread, so the cells spread through the lymphatic system. Somehow those cells get inside the vascular system and get moved around by the normal processes of the blood system and just end up somewhere.

Endometriosis is definitely one of those mysteries that we have good ideas about, but how it is caused or what actually causes it, is still just theories. 

Q: Why does it need awareness?

A: With endometriosis, even in our literature, there are still a lot of unknowns. They say that we are missing more endometriosis than we are catching, which is sad because endometriosis not only affects people for pain, but it can lead to infertility issues and cause debilitating pain that can keep people from work, school and normal activities. Just knowing that there is something that could be causing someone’s pain is enough of a reason to try and help someone get better.

Ending the Myths around Endometriosis 

“One of the biggest misconceptions that I see, is just because you have a painful period, does not necessarily mean that you have endometriosis,” Dr. Ewell said. ​“Painful periods, by definition are called dysmenorrhea – that just means painful period and that can be caused by an array of things. Endometriosis is on that list, but there are multiple other reasons for just a painful period. When you start having painful period, with other symptoms – pain with sex, and pelvic pain throughout the whole cycle then our suspicion of endometriosis increases.”

“Another big misconception about endometriosis is, ​‘I have endometriosis, I need a hysterectomy,’ That’s not true. A hysterectomy is an option but it should be a final option.”

Myth: Serious pain is normal during your period

Some cramping and some discomfort can be very normal but it should not be excruciating where it’s causing you not be able to perform daily functions. Maybe one day of a six day cycle could be uncomfortable but it should be managed easily with ibuprofen, Alieve or Tylenol.

Myth: You can’t get endometriosis when you’re young

Theoretically, endometriosis can start as soon as women start menstruating. There is not a 100 percent way of knowing what causes it, when it starts and why it happens to some people and not everybody. You could see a teenager that has it all the way up to someone that is almost going through menopause. 

Myth: Endometriosis means you can’t get pregnant

That is absolutely false. There are many women that are successfully able to get pregnant after a diagnosis of endometriosis. Sometimes it does require having surgery to get rid of any endometriosis we can see, but women with endometriosis can get pregnant. It may be harder for some, but they can get pregnant.

Myth: Pregnancy cures endometriosis

Pregnancy pushes pause on endometriosis. You will still carry that diagnosis of endometriosis after pregnancy but the symptoms will likely not be happening during pregnancy because you are not having those ebbs and flows of hormones that you have during your cycle. 

Myth: It’s all in your head

It’s not all in your head. If it hurts, we should do something about it. Some cramping and discomfort can be normal but excruciating pain, no. 

What to ask your doctor

Simply talk about the pain that you are experiencing every month. Talk to your doctor about what you have done in the past that has worked or hasn’t worked. Any OBGYN, as soon as you start talking about pain, will start asking a bunch of questions to hopefully guide them one way or another, whether it’s down the endometriosis path or it’s an infectious path. Simply bringing it up is the best thing you can do, and it doesn’t matter if you’re worried about a heavy, painful period, tell your doctor. 

If you are confused about what your provider has told you, there are plenty of resources on the web that are factual and evidence-based. But if you are nervous about the recommendation that a provider gives you, you should always seek a second opinion.