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Endometriosis: What You Need to Know About Symptoms, Stages, Surgery and Treatment
Endometriosis is a common but often misunderstood condition that affects millions of women, particularly those of reproductive age. It’s estimated that 5%-10% of women and adolescents aged 15-49 are impacted, with up to 50% of women who experience infertility also facing this condition according to Yale Medicine.
However, the condition often goes undiagnosed or misdiagnosed for years due to the variability of symptoms and the need for surgery to confirm a diagnosis, leading to an average delay of four to 11 years between symptom onset and proper treatment. At Her Health Voice, we spotlight real endometriosis stories to illuminate a commonly overlooked condition.
To shed light on this complex condition, we’re joined by Dr. Tara Chadwick, a board-certified gynecologist and skilled surgeon at The Gynecology Center at Mercy Medical Center in Baltimore. Dr. Chadwick specializes in treating complex gynecologic conditions, including endometriosis, and is renowned for her compassionate, patient-centered approach.
In this article, Dr. Chadwick provides expert insights into endometriosis, discussing its symptoms, stages, diagnosis, treatment options, and impact on daily life and fertility. Whether you’re newly diagnosed or seeking more information, this discussion offers valuable guidance on managing endometriosis effectively.
What is endometriosis?
Dr. Tara Chadwick "What endometriosis is basically is where you have the cells inside the uterus, outside the uterus, in the abdomen. We think it gets there one of three ways, but most likely something called retrograde menstruation. So every month when you have a period, some of the blood flows back through the tubes and sits in the belly. Ninety percent of people clear [that blood] away without a problem. For 10% of people, they don't. We don't always know why. We think there's an immune component and a genetic component to it. Endometriosis occurs in those 10% of people. The cells stick to the inside of the abdomen and cause a lot of pain and inflammation because of the same cells in the uterus."
What are the main symptoms of endometriosis?
Dr. Chadwick outlines the primary symptoms: "In general the main symptom that we see is pain, or something that we call dysmorphia, which is pain with periods. Sometimes depending on where the endometriosis sits, you can have other symptoms as well."
"Oftentimes part of it is that many women just assume that those symptoms are normal and that it's normal to have a very painful cycle or it's normal to have some of these symptoms."
"Oftentimes we'll see GI symptoms. That can be anything like nausea with periods. Sometimes people have vomiting diarrhea, constipation, or painful bowel movements with their periods. We also sometimes can see urinary symptoms if endometriosis involves the bladder. People may feel pain with a full bladder or pain with urination or frequency. We'll see pain with intercourse, as another symptom of endometriosis. Typically, we see cyclic pain with a period. As that advances, people can start having pain outside of their cycles as well."
How is endometriosis diagnosed?
Diagnosing endometriosis can be challenging. Dr. Chadwick explains: "The only way to definitively diagnose endometriosis is surgery. So that's the other component here. And endometriosis generally does not show up on imaging. There's no blood test for it. If you have somebody who's used to treating endometriosis says, once we hear about your symptoms, we can reasonably suspect that somebody has endo. The only way to definitively tell you yes, you have it is to go in and surgically do a diagnostic laparoscopy, remove those spots."
"We usually say about 30% of people with infertility have endometriosis, and we think that part of that is there's just scar tissue. We know endometriosis can cause lots of scar tissue."
What are the stages of endometriosis?
Dr. Chadwick outlines the four stages of endometriosis:
"Stage one endo would be just superficial endometriosis, not involving the ovaries or other organs there. Stage two would be a deeper infiltrating endometriosis. Stage three would potentially involve the ovaries or more scar tissue. And stage four generally would mean that you have significant scar tissue there. Sometimes the bowel and the uterus can actually be stuck together. Sometimes you'll have endometriomas which are cysts of endometriosis in the ovaries."
It's important to note that, as Dr. Chadwick emphasizes, "Endometriosis stage does not always correlate to symptoms. So sometimes we'll go in to operate for something different, a fibroid, something else, and we see stage four endometriosis. And the patients will say, I actually really never had much pain with periods at all. And then we have patients that are in excruciating pain. We go in and it's just stage one, a couple little spots of endometriosis."
What are the treatment options for endometriosis?
Dr. Chadwick outlines three main approaches:
1. Lifestyle: "We have some good data that exercise before periods can help with symptoms. We also have some good data about low-inflammatory diets that some patients find helpful. We have good data about NSAID medications like Motrin, which can actually block one of the inflammatory hormones that endometriosis stimulates."
2. Medical management: "Typically that's something for hormonal control, like some type of birth control option. The goal there is to decrease stimulation of that endometriosis. So we usually want you on something that's sort of low-dose estrogen or just progesterone to help decrease stimulation of those implants to make periods a bit less uncomfortable."
3. Surgery: "That's typically where we go in laparoscopically, we identify areas of endometriosis and we either excise or burn those areas. Typically we see a little bit of a better response to pain from surgery, but obviously surgery has more risk associated with it than medication."
What does endometriosis laparoscopy surgery involve?
Dr. Chadwick describes the laparoscopic procedure: "Typically, with laparoscopy, we use a camera to perform the surgery. We make an incision at the belly button and one on each hip, with a possible fourth incision depending on what we observe. These incisions are generally small, about the width of a finger. We fill the abdomen with gas to improve visibility."
"We then carefully examine all the surfaces in the pelvis and abdomen to identify areas of endometriosis. It’s crucial to have a surgeon who is experienced in endometriosis surgery and skilled at identifying it. Most surgeons who perform this surgery regularly have completed an additional two years of specialized training."
"Endometriosis can appear with a classic 'powder burn' lesion, characterized by dark brown or reddish areas. However, it can also look different, such as fluid-filled blisters or vesicles. This type of endometriosis may release more inflammatory hormones and cause increased pain, especially in adolescents."
"That's really the goal, is to be able to give people their lives back."
"Sometimes, endometriosis tissue may appear white or streaky and differs from the surrounding tissue. We often use narrowband imaging, a filter that highlights extra blood supply, to help identify areas with additional vasculature that may indicate endometriosis."
Dr. Chadwick adds, "It's important to note that symptoms of endometriosis can resemble those of other conditions that cause pelvic pain. Patients may be treated for various issues before endometriosis is correctly diagnosed as the source of persistent pain."
How does endometriosis affect fertility?
Dr. Chadwick explains the connection between endometriosis and fertility: "We usually say about 30% of people with infertility have endometriosis, and we think that part of that is there's just scar tissue. We know endometriosis can cause lots of scar tissue. Sometimes that affects the fallopian tubes and if the tubes are scarred together, then egg and sperm can't meet through the ovulatory process. Doesn't mean you can't become pregnant. Just means that you would likely need help. Then the other mechanism we think is just inflammation, and we're not really sure why."
Why is endometriosis often misdiagnosed or diagnosed late?
Dr. Chadwick explains several reasons for the challenges in diagnosing endometriosis:
1. Symptom overlap: "The symptoms can sound like other things. We know that there are other conditions that can cause pain with periods that are not endometriosis."
2. Lack of non-invasive diagnostic tools: "We can't definitively diagnose it without surgery. It would be much easier if we had another modality that was a little less invasive to be able to diagnose."
3. Normalization of pain: "Oftentimes part of it is that many women just assume that those symptoms are normal and that it's normal to have a very painful cycle or it's normal to have some of these symptoms."
4. Lack of awareness among some healthcare providers: "Some providers who are not used to treating endometriosis may miss that or attribute it to something different. There was a statistic that said average patients with endometriosis will see like 3 to 5 doctors before they get diagnosed. And oftentimes there can be like a nine-year lag from their symptom starting to a diagnosis."
"Is it something where you take an Advil and you go about your day, or is it something where you're in bed all day, and you're not able to function? Because that's not normal."
Can endometriosis be cured?
While there is no definitive cure for endometriosis, Dr. Chadwick emphasizes the goal of treatment: "Our goal is always to make sure that we can manage your symptoms. Obviously we want to do as few surgeries as possible. For me, I usually use a combination of surgery and medical management depending on patients' symptoms. And hopefully we can prolong a good quality of life as long as possible. That's really the goal, is to be able to give people their lives back."
How does endometriosis affect daily life?
Endometriosis can significantly impact a person's quality of life. Dr. Chadwick notes: "You shouldn't have to miss school. You shouldn't have to miss work. Those symptoms are not normal. If somebody comes to see us for a regular visit and they're telling me that they have pain with periods, we want to dive into it, is it mild to moderate? Is it something where you take an Advil and you go about your day, or is it something where you're in bed all day, and you're not able to function? Because that's not normal."
What are the latest developments in endometriosis research?
Dr. Chadwick highlights some areas of ongoing research:
1. Improved diagnostic tools: "There is some research in the works about potentially doing some imaging with different trackers that can see and identify endometrial tissue. We don't have anything that's FDA-approved yet or that has gone through rigorous testing. But there are some things in the work that hopefully would be able to identify patients sooner."
2. Fertility treatments: "With better access to things like fertility treatments, that's really helped a lot of our endometriosis patients as well."
3. Understanding inflammation: "We think that it has to do with inflammation because some patients, either with just an easy stage for endometriosis have issues becoming pregnant. And we know that after surgical intervention, pregnancy rates increase within the first six months after surgery."
Is endometriosis genetic?
Dr. Chadwick mentions a genetic component to endometriosis: "We do know that there is a genetic component. So oftentimes if you have a family member with endo, we sometimes see those patients sooner because they are more aware of what these symptoms are."
How can someone find an endometriosis specialist?
Dr. Chadwick advises: "Typically you can start with your primary gynecologist and maybe mention to them, I've looked into some of these symptoms. Could this be something that is affecting me? There are also lots of endometriosis experts now, especially as we're being trained. And like I said, our training has gotten much better over the last ten years or so. You can always look for endometriosis specialists in your area."
She adds, "Depending on where you live depends on the access. Most major metropolitan centers will have lots of physicians who do what we do. And you would be looking for a minimally invasive gynecologist or a pelvic pain center."
What support is available for people with endometriosis?
Dr. Chadwick mentions the web as a source of finding an endometriosis community: "There's also a lot of good online forums where patients can chat and share their stories, which can be super helpful in terms of having patients be able to share. And sometimes the diagnosis can be easier to process if other people and have support."
How has awareness of endometriosis changed in recent years?
Dr. Chadwick notes: "It's just been great to have more awareness about endometriosis, and I think we're getting much better about spreading awareness. Not only with patients but within the medical community itself. We're starting to see more patients sent to us for possible endometriosis from GI specialists, from primary care. It's just something that's on the radar a bit more, which is great."
Why do patients sometimes feel overlooked or dismissed in their experiences with endometriosis?
Acknowledging the endo community's frustration with delayed diagnosis, Dr. Chadwick emphasizes the importance of feeling heard: "I think that's one thing that we see a lot. I've been telling somebody for years that my periods are bad, and I feel like nobody's listening. So our goal is to make people feel that we're listening and that we're here, and that we can help."
Endometriosis is a complex condition that affects many individuals. While diagnosis and treatment can be challenging, increased awareness and ongoing research are improving the outlook for those with endometriosis. If you suspect you may have endometriosis, it's important to seek care from a knowledgeable healthcare provider who can help manage your symptoms and improve your quality of life.
