What Is Endometriosis?

Medically reviewed by Dr. Stacy Hengisman MD and Felice Ramallo MSRD.

Endometriosis is a relatively common reproductive health condition in women. It is estimated that endometriosis occurs in 6-10% of women of reproductive age.  According to the U.S government’s Office of Women’s Health, endometriosis is defined as occurring when the endometrium (tissue that originates from the lining of your uterus) grows outside of the uterus, and implants itself in the fallopian tubes, ovaries, outer surface of the uterus, vulva, cervix, or bowels (rarely, endometriosis can appear in other parts of the body, such as the lungs and skin).

Endometriosis is an interesting condition in that it affects up to 1 in 10 women  of reproductive age, but it is not widely talked about, and is often left undiagnosed until a woman tries to conceive. In fact, it is estimated that the prevalence of endometriosis in infertile women is 38%. We aim to change the dialog around endometriosis:   endometriosis is something that can be diagnosed before trying to conceive, and its signs should not be written off as ‘normal period pain.’ For that reason, this article will go into what endometriosis involves, symptoms of endometriosis, discuss endometriosis and fertility, and cover the most common treatment plans for this condition (since there is no cure as of yet). Let’s dive in.

Defining endometriosis

Endometriosis occurs when endometrial tissue grows outside the lining of the uterus or womb. This condition is known to be very painful, and this is because these growths may swell and bleed in a similar way that the lining of the uterus bleeds during a menstrual period, except these growths are in areas of the body that cannot easily shed. Besides pain and other uncomfortable physical symptoms (which we will explore in the next section), endometriosis can have further effects, such as blocking fallopian tubes when growths cover (or grow into) the ovaries; the development of cysts from trapped blood in the ovaries; inflammation; scar tissue and adhesions that can cause pelvic pain and make conception difficult; also problems in your intestines and bladder.

Symptoms of endometriosis

Unfortunately, endometriosis brings with it a host of symptoms that – at best – are uncomfortable and inconvenient for patients, and at worst, can have an extremely negative impact on day to day life. Examples of such symptoms include:

  • Physical pain
  • This is a very common complaint from women with endometriosis. Pain can manifest in the form of menstrual cramps, chronic pain in the lower back and pelvis, pain during (and after) sex, pain in the stomach (speciifcally the intestines), and painful bowel movements or painful urination during menstrual periods.
  • Difficulty becoming pregnant
  • As we touched on earlier, some women with endometriosis have painful cramps brushed under the rug by doctors, so they don’t know they have endometriosis until they make an appointment to discuss difficulty conceiving. For other women (research estimates around 25% of patients), they are asymptomatic and only discover they have endometriosis when they want to understand why they are having difficulty getting pregnant. In either case, the research is clear that there is a clear link between endometriosis and infertility.
  • Stomach and digestive problems
  • These symptoms typically worsen during menstrual periods, but endometriosis can trigger nausea, diarrhea, constipation, and bloating.

What is the cause of endometriosis?

Right now, it is unclear why some women develop endometriosis and others don’t. Experts hypothesize that problems with period flow could trigger it, since in the case of retrograde menstrual flow, some of the tissue shed goes to other areas of the body, such as through the fallopian tubes and into the pelvis. On the other hand, endometriosis could be an estrogen-dominant condition (similar to PCOS), and be related to a hormonal imbalance. Finally, researchers suggest there could be a genetic component to this, since endometriosis can run in families, while in other cases it may be because of surgery: in C-sections and hysterectomies, endometrial tissue “could be picked up and moved by mistake”. This is why having had a C-section is a (low) risk for endometriosis.

Despite the uncertainty behind the cause of endometriosis, what we do know is that endometriosis is most common in women in their 30s and 40s, and one may be at higher risk if they have:

  • Not had children before
  • Short menstrual periods (27 days or fewer apart)
  • A family member who has been diagnosed with endometriosis
  • Longer menstrual periods (lasting 7 days or longer)
  • Another health problem that blocks the flow of menstrual blood from your period

Endometriosis and infertility

Endometriosis is, unfortunately, closely related to infertility. Johns Hopkins Medicine reports that one quarter to one half of women who have infertility are thought to experience endometriosis; in some cases, this infertility “may be only temporary”, while in other cases surgery and treatment can help restore fertility. There are also cases in which endometriosis leads to indefinite infertility.

So how does endometriosis impact fertility in the first place? Well, researchers believe that scar tissue, as a result of endometriosis, can make the release of the egg from the ovary and its journey through the fallopian tube difficult. How does this happen? Well, research seems to indicate that endometriosis can lead to multiple potential problems, including “distorted pelvic anatomy,” endocrine and ovulatory abnormalities, and “altered peritoneal function” (altered state of the abdominal wall and organs in the abdomen). All this means that women who are infertile are 6 to 8 times more likely to have endometriosis as women who are fertile.  

How is endometriosis diagnosed?

It is important for women who have endometriosis to seek medical treatment given the widely documented impact this condition can have on one’s psychological, emotional, and physical health. Fortunately, there are multiple methods by which physicians can seek a diagnosis, including:

  • Pelvic exam
  • Usually a doctor will complete a pelvic exam and a physical exam to get a clearer idea of whether you are likely suffering from endometriosis, or whether other potential diagnoses could be at play
  • Laparoscopy
  • This is a minor surgical procedure in which a thin tube with a camera at the end (inserted into the abdomen through a small incision) can determine the location, extent, and size of any endometrial growths.
  • During this procedure, your doctor may take and biopsy any “suspicious tissue” and confirm a diagnosis by examining the tissue under a microscope
  • Ultrasound
  • This imaging technology can be helpful in viewing the uterus and understanding where growths, if any, appear on the uterus and outside of it
  • CT scan
  • This is another noninvasive imaging technology that uses a combination of X-rays and computers to create images of the body that detects abnormalities (which would not show up on a normal X-ray)
  • MRI scan
  • This procedure is non-invasive and will yield a 2 dimensional view of a specific organ or structure

The most common methods to diagnose endometriosis is a combination of a physical exam, a pelvic exam, and a laparoscopy.

It may also be useful to know that an endometriosis diagnosis is not exactly binary. There are different types of endometriosis, categorized under ‘stages’ which reflect the severity of the condition. Specifically, the four stages are as follows:

  • Minimal
  • Mild
  • Moderate
  • Severe

Stages are diagnosed depending on the extent of the endometriosis (where tissue is growing, and how much of it), whether the fallopian tubes have become blocked from tissue or scar tissue, the extent of pelvic adhesions (tissue growing on the pelvis), and the involvement of pelvic structures in the condition. Note that none of the above criteria to diagnose which stage of endometriosis a woman has takes into account pain or physical symptoms: it is entirely possible that a patient with ‘mild’ endometriosis experiences higher pain during her menstruation than a woman with a diagnosis of ‘severe’. The above stages are useful when understanding the internal spread and state of any and all tissue growth.

Treatment options for endometriosis

Currently there are two options for treating endometriosis, one is medical and one is surgical. Some women opt for a mixture of the two, while some decide to take a ‘watch and wait’ approach, in which they opt to pursue neither route for the moment, and instead check in routinely with their healthcare provider about their symptoms.

Let’s first explore the medical treatment options:

  • Hormonal treatment

Hormone therapy is used to treat endometriosis and alleviate pain. Since most women’s pain from endometriosis comes around the time of their period, these hormone treatments are aimed at stopping the ovaries from producing hormones (such as estrogen) which prompt ovulation. The hope here is that this will slow not only the growth of tissue in unwanted places, but also help prevent scar tissue from accumulating. Unfortunately, this treatment option does not mean that existing adhesions go away.

Options for hormonal treatment include:

  • Gonadotropin-releasing hormone (GnRH) agonists which puts the body in a ‘menopausal state’
  • This should not be used for more than 6 months at a time, since the risk for heart complications and bone loss increase as one stays on this medical for longer
  • Birth control pills
  • This stops ovulation from occurring and women from getting their period (instead, they have something known as a ‘withdrawal bleed’). Usually, endometriosis pain will be relieved for the duration of taking the pills, but once coming off birth control, the symptoms of endometriosis also return.
  • IUD
  • Progesterone-only IUD (though this birth control can also come in a pill format) also stops ovulation and can help with endometriosis symptoms in the same way the combined birth control pill can. Unfortunately, endometriosis symptoms also return once the IUD is taken out.
  • Danazol
  • This medication stops the release of hormones involved in the menstrual cycle. While on this drug ovulation stops. It comes with side effects which may be more severe from hormonal birth control, which is why this is a last resort behind the previous two options mentioned above.
  • Pain medication
  • Anti-inflammatory pain medication, such as high-dose aspirin and ibuprofen, are often used to try to alleviate pain associated with endometriosis. There is not much research on which NSAIDs are more effective than others.

Next, there are surgical treatments that can be pursued when looking to treat endometriosis.

  • Laparoscopy
  • This procedure may sound familiar as we covered how it can be used to diagnose endometriosis in a previous section. In this case, the surgeon will make two more small incisions in the abdomen and insert lasers (or other surgical instruments) in order to remove existing lesions, destroy lesions (sealing blood vessels without stitches using intense heat), and remove scar tissue. This option may be more effective in women with moderate endometriosis.
  • Laparotomy
  • This is an abdominal surgery procedure which involves the removal of endometriosis patches. In this procedure, the uterus may also be removed (hysterectomy), as well as the ovaries and the fallopian tubes if they also have growths or lesions on them.
  • Note that this surgery is often a last resort because of how major it is.

Next steps if you suspect you have endometriosis

Endometriosis is a chronic reproductive health condition that can be extremely impactful on one’s day to day life. It is critically important that – if you have symptoms that are common in patients with endometriosis, or you have other reason to suspect you may have it – that you seek out medical advice from your primary care physician.

Period pain, or other types of pain, should not be immediately swept under the rug or minimized, and if you do not feel heard or seen by your healthcare provider, know that other options are out there. Specifically, consider meeting with a specialist, such as a gynecologist or getting a second opinion from another physician in your area. Given the long-term impact of endometriosis on one’s well-being and fertility, it is better to understand what your body is trying to tell you as soon as possible.

That being said, here are some tips for your first appointment with your healthcare provider.

  • Come prepared with notes and questions
  • If you can, include a list of your physical symptoms (along with how long they have persisted for, if possible), note when symptoms are at their worst, how heavy or light your menstrual flow is, and any other information you want to share with your physician
  • Write down any questions you have ahead of time. Questions such as the following are all good to have answered:
  • ‘What does the process for a diagnosis look like?’
  • ‘If I have endometriosis, what treatment options do you recommend?’
  • ‘How will this impact my fertility?’
  • Research doctors who specialize in reproductive health in your area
  • If you have access, consider making an appointment with a physician who specializes – or at least has experience in – women’s health and who cares about ongoing, individualized treatment.
  • If you have endometriosis, the solution isn’t to be put on birth control and sent away with little insight into how to treat this condition more holistically. Asking about pain relief, any holistic medicines that may be useful for pain relief or treatment (such as herbs and supplements that may be useful and will not conflict with any medication you’re on), and what your individualized treatment plan will look like are all important routes to explore in this first meeting. Specifically, look for a physician who wants to take a collaborative approach and asks questions about your needs, detailed medical history, and lifestyle preferences.
  • Take a pen and paper with you to your appointment
  • Sometimes doctor visits can feel like a whirlwind of new information, and it’s totally understandable if you forget (or don’t understand) some medical terminology used. Write down key insights and takeaways your doctor drops into conversation, so at the end of their thought process you can follow up with specific questions on what they just said, or you can call later if you see something in your notes you don’t understand.
  • Educate yourself as much as possible beforehand
  • Great resources for learning about endometriosis include the following:
  • U.S. Government’s Office of Women’s Health
  • Johns Hopkins Medicine
  • U.S. Government’s National Library of Medicine
  • Also quickly reading the following articles about how to advocate for yourself in the healthcare landscape can be indispensable, alongside this article on how to spot medical gaslighting.
  • What is medical gaslighting?
  • Advocating for yourself with PCOS
  • Be your own health advocate

Allara Health provides personalized treatment for hormonal, metabolic & gynecological conditions that utilizes a holistic plan that merges nutrition, lifestyle, medication and supplementation, and ongoing, expert support to heal your body.