Get answers to the most frequently asked questions about endometriosis from Megan Wasson, D.O., a minimally invasive gynecologic surgeon at Mayo Clinic.

Hi, I'm Dr. Megan Wasson, a minimally invasive gynecologic surgeon at Mayo Clinic. I'm here to answer some of the important questions that you might have about endometriosis.

What causes endometriosis?

I wish I could tell you the answer to that, but unfortunately, we don't know. Currently, we think that the likely source of endometriosis is actually occurring during development as a fetus. So when a baby is developing inside the uterus of its mother, that's when we think endometriosis actually starts.

How do I know if I have endometriosis?

That's a really great question. So endometriosis is something that can be a little bit elusive, but we can suspect it based on symptoms that you might be experiencing. If you're having pain with your periods, pain in your pelvis in general pain with intercourse, urination, bowel movements, all of that may point us to a suspicion of endometriosis. But unfortunately, the only way to say 100% If you do or do not have endometriosis is to do surgery. Because during surgery we can remove tissue, look at it underneath the microscope, and definitively be able to say whether you do or do not have endometriosis.

Can endometriosis be seen on imaging?

Unfortunately, most of the time, no. The vast majority of endometriosis is superficial endometriosis, meaning that it's almost like paint spackling on a wall, that we can't see it unless we actually go in and take a look surgically. The exception to that is if there's endometriosis actually growing into organs in the pelvis or the abdomen like the bowel or the bladder. That's called deep-infiltrating endometriosis. In those scenarios, we can frequently see that disease either on ultrasound or on MRI.

If I have endometriosis, should I have a hysterectomy?

Not necessarily. So endometriosis, it's cells similar to the lining of the uterus that are growing outside of the uterus. So it's truly not an issue with the uterus at all, which is what we treat with hysterectomy. That being said, there is a sister condition to endometriosis called adenomyosis and that occurs concurrently in 80 to 90% of patients, and so with adenomyosis, the uterus itself can be a source of problems, including pain. In those scenarios, sometimes we do consider a hysterectomy at the time that we're treating endometriosis.

What happens if my endometriosis is left untreated?

The key thing to remember here is that endometriosis is a progressive condition, and it will continue to grow and may cause progressive symptoms. So for some patients, that means that initially the pain was only with the menstrual cycle. But over time with that progression of disease, the pain can start to occur outside of the cycle, so throughout different times of the month, with urination, with bowel movements, with intercourse. So that can prompt us to need to intervene and do treatment if we hadn't done anything previously. But that being said, even though we know endometriosis is progressive, for some patients, it doesn't ever progress to the point that we would need to do any treatment because it's more of a quality of life issue. And if it's not impacting the quality of life, we don't really need to do anything.

Can I become pregnant if I have endometriosis?

100%. You can absolutely have children if you have endometriosis. When we talk about infertility, those are patients who are struggling with pregnancy already. But if we look at all patients with endometriosis, everyone with that diagnosis, the vast majority are able to achieve pregnancy without any problem whatsoever. They can get pregnant, they can carry the pregnancy. They walk home from the hospital with a beautiful baby in their arms. So, yes, unfortunately, infertility can be associated with endometriosis. But the vast majority of the time, it's truly not a problem.

How can I be the best partner to my medical team?

Being a partner for the medical team is truly key. A lot of individuals with endometriosis have been in pain for a prolonged period of time, which unfortunately means that the body has changed in response. And pain has almost become like an onion with endometriosis at the core of that onion. So we need to work not only to treat the endometriosis, but treat other potential sources of pain that have arisen. And so I encourage you to educate yourself, not only so that you can come in to your health care provider and have a dialogue and a conversation as to what you need and what you're experiencing. But also so you can be an advocate and make sure that you are getting the health care that you need and that you deserve. Also talk about it. Know women have, for years and decades, been told that a period is supposed to be painful and we just have to unfortunately suck it up and deal with it. That's not the reality. The reality is we should not be laying on the bathroom floor when we have our period. We should not be crying during intercourse. That is not normal. If you're experiencing it, speak up. Talk to your family, Talk to your friends. Talk to your health care provider. Let them know what's going on. Because truly, we are here to help and together we can start to make a impact not only on endometriosis for you, but endometriosis in society as a whole. Never hesitate to ask your medical team any questions or concerns you have. Being informed truly makes all the difference. Thanks for your time and we wish you well.

Sept. 16, 2022