Caitlyn Tivy, PT, DPT, OCSEndometriosis is a complicated and often debilitating condition. It’s believed to occur in approximately 10% of people with uteruses of “reproductive age." That’s approximately 200 million people worldwide – a whole lot of folks! About two-thirds of people with the condition will develop symptoms before the age of 20, but it may take several years and consultations with multiple healthcare providers to receive a diagnosis. One of my missions in spreading awareness about endometriosis is to help more people receive a diagnosis and appropriate care more quickly.
Hi there! My name is Caitlyn, and I am a pelvic health physical therapist. I specialize in helping people of all ages and genders with problems that affect the pelvis, like back, hip, and pelvic pain, problems related to pregnancy, issues with peeing and pooping, pain with sexual activity, and more.
I want to talk about one of the most common but complicated conditions I encounter in my patients: endometriosis. I can help you learn about what endometriosis is, how to determine if you or someone you care about might have it, and how to get help. Although endometriosis, or “endo”, for short, is complex and still incompletely understood, there is hope and help out there, and we are learning more about it every day. Let’s get to it!
What is endometriosis?
The endometrium is the name for the tissue that lines the inside of the uterus. Endometriosis is a disease in which this tissue, or tissue similar to it, starts to grow outside of the uterus. This abnormal tissue is termed “endometriotic”, and it must be composed of at least two of the following three components: 1) endometrial epithelial cells, which typically line the inside of the uterus; 2) endometrial stromal cells, which are progenitor cells, sort of like stem cells, that can differentiate into various types of other cells; and 3) evidence of chronic bleeding in or near the endometriotic tissues. This tissue can grow and attach to other organs where it doesn’t normally belong, such as the ovaries, the fallopian tubes, the intestines, the bladder, the rectum, the internal walls of the abdomen, and even the diaphragm and lungs. The presence of this tissue where it’s not supposed to be can cause a whole host of problems, from chronic pain in the pelvis, to extremely heavy and long-lasting periods, to infertility.
Endometriosis is a complicated and often debilitating condition. It’s believed to occur in approximately 10% of people with uteruses of “reproductive age” (teens through early 50s). That’s approximately 200 million people worldwide – that’s a whole lot of folks! About two-thirds of people with the condition will develop symptoms before the age of 20, but it may take several years and consultations with multiple healthcare providers to receive a diagnosis of endometriosis.
Additionally, large population studies have shown that compared to folks without endo, people with endometriosis have at least double the risk of having other pelvic health problems. Common co-occurring conditions include pelvic inflammatory disease (PID), interstitial cystitis (IC), uterine fibroids, irritable bowel syndrome (IBS), and in rare cases, endometrial and ovarian cancer. Several distinct but overlapping medical conditions that exist all at once can make the diagnostic process even more complex. One of my missions in spreading awareness about endometriosis is to help more people receive a diagnosis and the appropriate care more quickly.
What are some symptoms of endo?
As I mentioned above, endometriosis is a complex condition, particularly because it can present differently in different patients. One person may struggle mightily with the effects of the disease, while another might only have mild, occasional symptoms. In fact, current data indicate that between 20-25% of people with endometriosis may be asymptomatic, meaning they have the condition but never know it due to the absence of symptoms or problems. Additionally, the severity of the disease inside the body does not always correlate to symptoms: some people with severe, late-stage endo have minimal symptoms and only learn they have the condition when having a surgical procedure for something else, such as appendicitis.
For those folks who do have symptomatic endometriosis, however, it can be comforting to know that there are many others out there going through similar struggles. The following is a list of some of the more common symptoms that people with endometriosis report, but keep in mind that it is not exhaustive: just because a symptom isn’t listed here, that doesn’t mean it’s not possible!
Pelvic and/or abdominal pain – sometimes described as a “headache in the pelvis”
This can occur both during your period (cyclic pain) and also when you aren’t bleeding (non-cyclic pain).
Pain in the pelvis can present in many ways. It can feel like a deep pain or a more surface-level sensation; in a specific location like the abdomen or vagina, or more diffusely throughout whole pelvis; with various qualities such as burning or aching; and with varying levels of intensity.
Pain in other parts of the body
The adhesions of endometriosis can attach to and grow on nerves deep within the pelvis and abdominal cavity, placing pressure on the nerves and disrupting normal nerve signaling. Many of these nerves travel out of the pelvis and into the legs and lower back. If their signals are disrupted by the adhesions attached to them, this can lead to nerve pain in the back and legs.
Sensitization of the pain response: When pain persists for months or years, it changes the way the body processes pain. This process, known as central sensitization, can make us more susceptible to feeling pain in other areas of the body, even in areas that aren’t directly connected to the pelvis or abdomen. Central sensitization can also lead to allodynia, in which we feel pain with things that aren’t typically painful, such as a light touch on the skin.
Abnormally long periods (bleeding lasting longer than 7 days)
Abnormally heavy periods – where bleeding is heavy enough to require a tampon or pad change every hour or two
Severe pain during the menstrual cycle – think period cramps from hell, the kind that make it feel impossible to work, go to school, or do basically anything other than lie in bed
Pain with sexual activity
Sex can be painful for many people with endo. This is particularly true of vaginal or anal intercourse, but it can also occur with other types of sexual activity. This can be related to the endometriotic adhesions themselves, which can attach to surfaces near the vaginal and anal canals and cause pain when subjected to pressure during sex. You can learn more about painful sex (and what to do about it!) here, here and here.
Additionally, people with endo also often develop myofascial pelvic pain in response to their disease: this means that the muscles and connective tissue of the pelvis become extra sensitive to pressure and touch, even if the muscles themselves are technically “normal.” In myofascial pain. the muscles and connective tissue of the abdomen, pelvis, back, legs, and other areas of the body can develop “knots” that also create their own type of pain. These “knots”, known as muscular trigger points, can cause pain both where they are located and also in other areas of the body. This is known as referred pain, and is part of the reason that people with endo may feel pain in their limbs and regions of the body that don’t even have endometriotic tissue. This extra sensitivity and referred pain can make the various sensations of sex too painful to enjoy.
Abdominal bloating and/or pain – this can include a variety of other symptoms like nausea, vomiting, and/or gassiness
Bowel and bladder trouble – diarrhea and/or constipation, pain with bowel movements and/or urination
Nerve problems – this can include pain, numbness, tingling, and other strange sensations in the lower body/legs
Infertility in advanced cases
Folks with mild endometriosis appear to have similar rates of fertility to the population of people without endo. Unfortunately, for people with advanced endo, it can be more difficult to become pregnant and/or carry a baby to term.
One known contributor to infertility with endo is the presence of endometriomas — abnormal cysts on the ovaries. These cysts can mess with the hormones needed to get pregnant, decrease the number of quality eggs in the ovaries, or prevent eggs that are present from maturing normally.
Fortunately, earlier diagnosis and treatment of endo can make these infertility issues less likely.
To make things even more confusing, endometriosis symptoms can present differently in young people than in older adults. Adolescents generally report their symptoms as any combination of the following:
Diffuse abdominal/pelvic pain
Low back pain
Heavy, painful periods that lead to missed school/activities
Headaches and/or dizziness
Pain during defecation (pooping) that improves after completing the bowel movement
This is where things can get confusing, as many of these symptoms could point to a whole host of other problems that aren’t endo. This is why many folks will see several different healthcare providers over several months or years before getting the correct diagnosis. Given that the majority of people with endo will first report symptoms in their teens, it is all the more important that we spread the word about the condition so that more people can get help sooner. We’ll learn more about diagnosis soon.
In addition to the physical problems it causes, endometriosis can also affect the social and emotional functions of life. Anxiety and/or depression are common in people with endometriosis. Living with chronic, recurrent pain is challenging to say the least, and the fact that this pain often interferes with social interactions and relationships only exacerbates the issue. Many folks with endo miss days of work or school due to pain and/or extremely heavy bleeding during their period. Since the pain associated with endometriosis is also often non-cyclic, people with endo may be less productive or absent from work or school multiple times throughout each month. Research has shown that young people with endo have decreased physical and social functioning compared to their peers, and the negative impact of endo on their mental health is also more profound than in people with other chronic health conditions.
What a laundry list of problems we have here, huh? While it can be daunting and even scary to see a list like this if you think or know you have endo, it doesn’t mean you’re doomed to a lifetime of pain and misery! Every year, we are learning more and more about how to better treat endometriosis and help people live and thrive despite it. This is my favorite part of teaching people about endo – the part where we get to talk about how endo is diagnosed and what can be done to help!
What causes endometriosis?
That’s a great question, but one for which we still don’t fully have an answer. Medical researchers have a number of theories. I’ve listed a few of the hypotheses here, and tried to simplify them as best I could. If nerdy science stuff isn’t your jam, feel free to skip to the next section.
Retrograde menstruation: This is one of the oldest theories for a cause, and most researchers still believe that it plays a role in the development of the disease. Retrograde, or reflux, menstruation occurs when a mix of blood and endometrial tissue (the normal lining of the uterus) flows backwards: instead of leaving the body during a period, it flows back into the abdominal and pelvic cavities. This process actually occurs in nearly all people who ovulate. Scientists still aren’t entirely sure why it would lead to disease in only a portion of the population, though some hypothesize that the blood and tissue that flows backwards during retrograde menstruation implants itself on the walls of the pelvic organs and survives there long enough to become the adhesions we see in endometriosis.
Stem cells: Stem cells are the “parent” cells from which all the cells in our body develop, including the cells that make up the lining of the uterus. During human development, stem cells differentiate, or split off into different roles: some form the brain, some the skeleton, some the muscles, etc. Even in a fully grown adult, stem cells are still at work: in a healthy uterus, for example, stem cells are responsible for regenerating the uterine lining every month prior to the start of each period.
In endometriosis, these stem cells inside the uterus appear to be dysfunctional – they don’t differentiate into specific roles like they are supposed to, and they can travel, undifferentiated, throughout the body via the bloodstream, lymph fluid, or wayward menstrual fluid (see the retrograde menstruation theory above). Scientists still aren’t sure exactly why this happens, but they do think that these dysfunctional stem cells may be responsible for the fact that endometriosis can be found widely through the body, as far away as the lungs and brain.
Estrogen-driven inflammation: Inflammation occurs when fluid and cells of the immune system accumulate in an area of the body, oftentimes in response to an injury. (Ever rolled your ankle and watched it swell up like a balloon? That’s inflammation.) Usually, once the immune cells have done their job to help repair the damage, the inflammation gradually goes away, as happens when a swollen ankle eventually shrinks back to its normal size. However, inflammation can sometimes occur in the absence of a specific injury, and the inflammatory cells and fluid can stick around longer than they are supposed to. We still don’t fully understand why this happens, but we do know that persistent inflammation can lead to pain, changes in the inflamed tissues, and the development of adhesions, which are kind of like hunks of scar tissue inside the body.
Researchers have found that inflammation is a key component in the development of endometriosis, and that estrogen, a key reproductive hormone in those with female anatomy, drives this inflammation. This is why suppression of estrogen with medication can help decrease pain and other symptoms in some people with endo – we’ll talk more about this type of treatment later. This is also why the process of menopause, in which the ovaries stop developing estrogen and other reproductive hormones, can often lead to significant relief of endometriosis symptoms.
Possible progesterone resistance: Progesterone is a hormone that may play a role in endo. At a basic level, hormones act in the body by attaching to cells and telling those cells what to do – they deliver information between different cells. Sometimes this signaling between cells and hormones gets disrupted, and that can lead to disease.
This research isn’t as clear as the data on estrogen, but some studies show that endometriotic cells produce large amounts of progesterone, and confusingly, are also resistant to signals from progesterone. This might explain why medications that act via progesterone (either by suppressing it or by increasing its concentration in the body) have mixed results in people with endo.
Reduced rates of normal cell turnover: Apoptosis is the normal process of programmed cell death in the body: it’s the body’s way of getting rid of old, defective, or otherwise malfunctioning cells, and it is key to preventing diseases like cancer. It’s sort of like our body’s form of recycling.
Endometriotic cells show reduced rates of this normal cell death. Even though these cells are abnormal and can cause problems in the body, they somehow manage to escape the body’s recycling bin. Because they aren’t dying off quickly enough, endometriotic cells tend to accumulate. As these cells accrue, they can generate the adhesions that then attach to other organs and cause pain and dysfunction.
Genetics: Our genes appear to play an important role in whether or not we get endometriosis: research has shown a sevenfold increase in the likelihood of the disease in first-degree relatives (parents and children) of people with severe endometriosis. However, this does mean that just because one of your family members has endo, that you are definitely going to have it, too. My family is a great example: my mother suffered from endo as a young woman, but fortunately, neither I nor my sister have it.
Not all people with endo inherit it from a family member. Some folks may develop “sporadic” endometriosis, meaning that none of their close relatives have it. These cases tend to be a bit less severe than those who inherit endo, though of course there are always exceptions.
How is endo diagnosed?
If you’ve been reading along and thinking, “Hey, this sounds a lot like me! Those are my symptoms! Now what?”, you’re not alone!
Here’s the really tricky part: getting a correct diagnosis of endometriosis.
As I mentioned before, it can sometimes take months or even years for people with endo to learn that they have it. Part of this delay comes from the fact that there is no single, simple test for endometriosis: you can’t just give a blood sample or get an x-ray to determine that you have endo.
How do healthcare providers arrive at a diagnosis? Much of the diagnostic process for endo relies on a clinical exam. This includes the background and symptom report you give to your provider, as well as a physical exam that can be done in an outpatient clinic.
This exam may include palpation (light touch for examination purposes) of your abdomen, back, and pelvis, and sometimes an internal vaginal exam. Endometriosis can’t be palpated from the outside or visualized from the inside during a vaginal exam; rather, these examinations are used to rule out other conditions that could be causing a patient’s pain and other symptoms. If a patient experiences pain with a vaginal exam, this can sometimes be a flag for a pelvic pain condition like endo. However, there are other conditions that can cause pain with a pelvic exam, such as vaginismus or vulvodynia, that also have to be ruled out.
In some cases, your provider may recommend additional testing, like blood tests or medical imaging, to help rule out other conditions. For example, blood tests can indicate hormonal disruptions that can mess with your menstrual cycle, and an imaging test called a pelvic ultrasound can look for the presence of large cysts on the ovaries that may be causing pain. However, these tests can only show the presence or absence of other conditions that aren’t endometriosis; they usually can’t detect endo itself.
At present, the only way to definitively diagnose endo is through laparoscopy, a surgical procedure in which the surgeon makes very small abdominal incisions through which a tiny camera can be inserted into the abdominal cavity. The surgeon can then use this camera to look for the adhesions on abdominal and pelvic organs that are indicative of endometriosis. Typically, your physician won’t recommend this procedure unless they already have a very high suspicion that you have endo. In that case, they will likely also recommend surgical intervention to remove the adhesions at the same time. We’ll learn more about this type of surgery, as well as other types of treatment, in the next section.
What are some treatments for endo?
Now that we’ve learned about the problems endometriosis can cause and how it is diagnosed, it’s high time to discuss how it can be treated. While we don’t yet have a definitive cure for endometriosis, there are many options for managing the condition and the symptoms it causes:
Because we know that endometriosis is driven, at least in part, by reproductive hormones, suppressing those hormones with medication is often recommended as a first step to address the symptoms of endo. If your symptoms improve in response to these medications, it is often a good indicator that you do indeed have endometriosis and may benefit from other types of treatment.
Many people with endo will not experience full relief of symptoms with hormonal suppression. This is why birth control and other medications that affect hormones should not be the only treatment offered to you, particularly if you still have symptoms after 3-6 months on these medications.
Your physician may recommend combining a contraceptive (birth control) with another type of medication called an aromatase inhibitor, which essentially eliminates the production of estrogen all together. This can help further decrease pelvic pain and even decrease the size of endometriotic lesions.
Hormonal birth control can be used to suppress ovulation and decrease estrogen levels. Long-term suppression of estrogen poses some health risks; for this reason, your physician may recommend a combined hormonal contraceptive (CHC), which acts on both estrogen and progesterone. Progesterone suppression can help counter the side effects of low estrogen, and may also provide additional pain relief by decreasing inflammation and reducing blood flow to endometriotic tissue.
Laparoscopic excision (LAPEX) surgery is considered the gold standard for treatment of endometriosis. In this procedure, a surgeon will use small tools placed through tiny incisions in the abdomen to remove all endometriotic adhesions from the tissues they are attached to, including the parts of the adhesion that may actually be embedded into the organ itself. As endometriosis can attach to many tissues and organs, this can be a very complex procedure that requires a highly skilled and specialized surgeon. This is why it is important to make sure that your provider is an endometriosis specialist with advanced training in excision.
For young people with endo, some evidence suggests that the placement of a hormonal intra-uterine device (IUD) after surgery can help prevent recurrence of endometriosis symptoms by suppressing the hormones that drive the disease.
Importantly, LAPEX is not the same as ablation or cauterization surgery. Ablation and cauterization use heat and electricity to “burn away” the endometriotic adhesions. Unfortunately, this can leave behind the “hidden” parts of the adhesions that have penetrated into the tissues and organs, and that remaining endometriotic tissue can essentially grow back and allow the endometriosis (and all its problems!) to return. For this reason, it’s truly valuable to seek out an excision specialist rather than opting for ablation/cauterization surgery, even if a surgeon who performs the latter procedure is much easier to find.
In the past, hysterectomy was one of the primary treatments offered to people with endo. This surgical procedure involves the complete removal of the uterus, and sometimes the fallopian tubes and ovaries, too. However, since endometriosis often exists outside the uterus and other reproductive organs, this procedure often did not significantly help reduce symptoms. This procedure is now often reserved primarily for very advanced cases of endo, and is not the treatment of choice for young people.
Another type of surgery for endometriosis involves the removal of endometriomas, which are cysts that grow on the ovaries in more advanced cases of endo. Because this procedure is somewhat risky, it is typically recommended only for the removal of very large cysts in an effort to improve fertility in patients who are trying to have children. Oftentimes, people with moderate to advanced endo may require additional interventions, such as in-vitro fertilization (IVF), in order to become pregnant.
While excision surgery is considered the gold standard for treatment of endometriosis, there are many other types of treatment that can also help people manage the symptoms and pain associated with the condition, particularly if LAPEX is not immediately available to them. Let’s look at a few of these now.
Medications for pain and inflammation
In addition to hormonal medications, your doctor may recommend some other medication to help manage pain. Over-the-counter anti-inflammatory medications like ibuprofen (aka Advil) or naproxen (aka Aleve) may be used to decrease some of the inflammation-related pain. However, while some patients will find these medications helpful, large studies have shown that they generally don’t provide significant relief for all patients. This is likely because inflammation is not the only source of pain in endometriosis.
Opioid painkillers are generally NOT recommended for the treatment of endometriosis-related pain.
Pelvic PT and exercise
The inflammation and adhesions of endometriosis are not the only things that can cause pain. Earlier, we discussed the process of central sensitization, in which the nervous system (the brain, spinal cord, and all the nerves) becomes very involved in exacerbating and maintaining the experience of pain in people with endo. We also discussed the role of myofascial structures and muscular trigger points in causing various types of pain. There is mounting evidence that people with endometriosis can benefit from techniques to address both myofascial pain and central sensitization.
This is where working with someone like me can be very helpful: pelvic health PTs specialize in the management of this type of pain. We have many different treatment approaches we can use to address myofascial pain, tissue tightness, muscular weakness or incoordination, central sensitization, and various other impairments that can impact the function of people with endo. Additionally, physical therapists are experts in exercise and movement, and research suggests that regular physical exercise can be helpful in managing endo by decreasing menstrual flow and the action of estrogen in the body. Interestingly, people with endo who exercise regularly appear to have a reduced risk of developing endometriomas, a hallmark of more advanced stage endometriosis.
While a detailed breakdown of what pelvic PT entails is beyond the scope of this article, I discuss this topic in more detail on my clinical practice’s website.
Complementary medicine and other providers
In addition to pelvic health PT, I find that many patients also benefit from working with other providers, such as acupuncturists, massage therapists, and psychotherapists/counselors, to promote well-being in all realms of their health. I also frequently refer patients to a dietician, as dietary changes can often be valuable in managing the symptoms of endo.
Now that you’ve learned more about endometriosis in all its complexity, you may be wondering where to begin when seeking help for yourself or a loved one. To that end, I’ve included a list below of links to many great resources for people with endo. (Disclaimer: many of these sites unfortunately refer exclusively to “women with endo”, but they still hold a lot of great information about living with endo for people of all genders and identities.) I hope that this primer on endometriosis has given you more insight into the condition, and that you feel empowered to begin a journey to healing and hope.
Endometriosis Foundation of America
Pelvic Rehab – where you can find a pelvic PT near you
Nancy’s Nook – one of the largest and most comprehensive online support groups for endo
My Endometriosis Team – a social network specifically for people living with endo
Read more: scarleteen.com