Endometriosis 101

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

You may have heard the term ‘endometriosis’ thrown around before, but what exactly is it? And what does it entail? Endometriosis is derived from the word ‘endometrium,’ which refers to the tissue that lines the uterus; as you might expect, endometriosis arises from endometrial tissue growing outside of the uterus. With each menstrual cycle, your body grows a new endometrium (which is consequently shed during menstruation), and this is to prepare your body for a fertilized egg. But what happens when tissue – resembling endometrial tissue – grows outside of the uterus? Well, that’s what we’ll be exploring in this article. We’ll talk about symptoms of endometriosis, what causes it, treatments to relieve symptoms, and what to do if you suspect you have endometriosis.

What is endometriosis?

As we touched on earlier, endometriosis is a chronic condition in which tissue (resembling endometrial tissue) grows outside of the uterus. It is thought to affect up to 10% of women of reproductive age – i.e. those between the ages of 15 and 44 – and most often this growth occurs on or around the reproductive organs in the pelvis or abdomen, such as the fallopian tubes, lining of the pelvic cavity, ovaries, and space between the uterus and rectum or bladder. Rarer locations for the lining to grow include the bladder, stomach, intestines, and cervix.

Okay, so if tissue that lines the uterus is shed every month, what about tissue that grows outside of the uterus, in the case of endometriosis? Well, unfortunately, this tissue does not shed like the tissue inside the uterus does; this buildup of excess tissue leads to extremely unpleasant physical symptoms, including inflammation, scarring, and painful cysts. According to Johns Hopkins, in some cases, it has been known to build up between reproductive organs and “stick” these organs together.

What causes endometriosis?

To understand how endometriosis typically affects patients, let’s first cover how the endometrium is thickened during the course of a regular menstrual cycle.

Understanding the endometrium lining

From the ages of 15 to 44, most women’s endometrium lining will change depending on where they are in their menstrual cycle. (It’s also worth noting that the thickness of the endometrium changes depending on age and whether you are pregnant. For instance, in girls who have not started menstruating, the endometrium is present, but is not as thick as it will be later in life). So let’s talk about different stages of the menstrual cycle:

During menstruation, the endometrium is at its thinnest, measuring between 2mm and 4mm in thickness. Next comes the proliferative phase, which often encompasses days 6 to 14, and it describes the time in which menstruation has ended, but ovulation has not begun yet. During this time, the endometrium lining is thickening slowly. It measures between 5mm and 7mm, and continues growing thicker, up to approximately 11mm. Around day 14, when ovulation begins, hormones trigger the release of an egg. This is the secretory phase, and endometrial thickness is at its peak, reaching up to 16mm. If the egg is not fertilized and an embryo does not implant, the progesterone levels fall, and without this hormone, “the endometrium isn’t maintained and the uterus will start to shed its lining, resulting in menstruation.”

A couple of notes here on the nature of the endometrium: the endometrium lining is thinner before menstruation begins in puberty, as well as after menopause. The endometrium is also important for pregnancy, since it needs to be the right thickness for the embryo to implant and for it to receive the nutrients it needs; again, in this case the endometrium lining is subject to change, since it often gets thicker as the pregnancy develops.  

Symptoms of endometriosis  

Doctors aren’t exactly sure why in some women tissue resembling that of the endometrial lining grows outside of the uterus, but as you can see from above, this presents multiple health issues. In women with endometriosis, inflammation, fibrosis, and adhesions can all result as a consequence of this tissue growing where it’s not supposed to.

Unfortunately,  growths outside the uterus are not shed in the same way the uterine lining is, there is reason to believe endometriosis growths “may swell and bleed in the same way the lining inside of the uterus does every month, during your menstrual period.” This can trigger swelling and pain, which is why physical pain is an extremely common complaint of endometriosis.

Often, this atypical growth triggers unpleasant physical symptoms, including:

  • Painful menstrual cramps
  • Pain during sex
  • Heavy bleeding on your periods
  • Spotting between periods
  • Difficulty getting pregnant
  • Painful bowel movements

Interestingly, the severity of these physical symptoms are not always related to a worse or better case of endometriosis: someone may have a lot of excess tissue growth, and experience relatively mild symptoms, while the opposite can also be true. This could be related to the locations of where tissue grows, as well as the extent of scarring and any adhesions.

Growths can go on to expand and cause further health problems linked to infertility and digestive issues. For instance, problems that could arise as a result of endometriosis are:

  • Blocked fallopian tubes (this is in cases where growths cover or grow into your ovaries, and trapped blood in the ovaries cause cysts)
  • Inflammation
  • Scar tissue
  • Problems in your intestines and bladder

Who is at risk for endometriosis?

Though doctors have difficulty predicting who will and won’t get endometriosis, as well as understanding the exact ‘why’ behind endometriosis, they have identified risk factors for this condition.

According to the US Office on Women’s Health, endometriosis is found in women in increased rates who have:

  • Never had children
  • Menstrual periods that last longer than 7 days
  • Shorter menstrual cycles (fewer than 28 days)
  • A family member with the condition

It appears that after menopause, if you have suffered from endometriosis, symptoms are thought to decline in severity. Presumably, this correlates with the body’s naturally declining levels of estrogen. Unfortunately, women who are in menopause but are taking menopausal estrogen containing hormonal therapy may not see an improvement in their symptoms.

Treatments for endometriosis

Unfortunately, there is no known cure for endometriosis.

As such, doctors collaborate with patients to create treatment plans that help relieve symptoms.

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. It’s worth also noting that which options you pursue (if any) will depend on your personal preferences, if you are trying to get pregnant, and the severity of your symptoms.

Let’s first explore treatment options for if you are not trying to get pregnant:  

  • 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.
  • Laparatomy
  • 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.
  • 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 treatments that can be pursued even if you are trying to get pregnant:

  • Laparoscopy
  • In this case, the surgeon will make two or 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.
  • Unfortunately, this does not forever halt endometriosis. However, it may allow you to get pregnant and have children, and then pursue other long-term hormonal therapy treatment options after.
  • 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.

Though not a cure for endometriosis, or even something that mitigates symptoms, if you are trying to get pregnant and have endometriosis, some women may also choose to pursue fertility treatment, because of difficulties conceiving.

Popular options include intrauterine insemination (IUI), in which sperm is collected and inserted directly into your uterus and in vitro fertilization (IVF), in which eggs are taken from your ovaries and fertilized by sperm in a lab, where they develop into embryos, and are implanted in your uterus. Doctors recommend that if you have endometriosis, it is worth speaking to your physician after around 6 months of trying to conceive, versus the 1 year timeline recommended for most low-risk women.

What to do if you suspect you have endometriosis

If you have been reading this article and thinking, “that sounds like me” or “I have those symptoms,” it can be extremely distressing to realize you may have this reproductive health condition. We encourage you not to worry too much before seeking professional advice, though. According to one study, 25% of women with endometriosis are asymptomatic, so it can be very difficult to tell upon first glance whether a woman has endometriosis or not: each case is different. It is, however, important to listen to your body and keep track of what it is telling you.

Generally, if you have symptoms that signal endometriosis, we highly encourage you to:

  1. Make an appointment with your family practitioner
  2. Explain your concerns, and ask for a pelvic exam or an ultrasound. In the meantime before the appointment, try to keep track of any symptoms, noting down dates and what may have been a precursor for them.
  3. During this appointment, pay attention to whether you feel heard; if you find yourself being rushed through the door, seek alternative advice. You shouldn’t have to fight to be listened to: you deserve quality care and a doctor who works with you in a collaborative way.  
  1. Talk with your doctor to get as much information and as many options as possible
  2. Remember, if you are diagnosed with endometriosis, you don’t need to rush into a treatment plan straight away! Take your time to ask questions, discuss any concerns with your doctor, and do your own research as to whether a certain treatment plan may genuinely be the right choice for you.
  1. Consider making an appointment with a specialist
  2. Resources like Allara Health connect you immediately to a board-certified OB-GYN or Nurse Practitioner, as well as a registered dietitian to tackle symptoms from a holistic perspective, which can include everything from medication, to nutrition, to lifestyle choices, to supplements, and beyond.
  1. Be proactive about getting the support you need
  2. Endometriosis comes with unpleasant, and in many cases, painful symptoms which are difficult to manage. On top of that, this condition can be emotionally isolating, so it can be beneficial to connect with others who know exactly what you’re going through or can provide helpful tools to handle your endometriosis.
  3. CBT and DBT therapy can be helpful in this regard, as well as having a community of people who get it: the subreddit r/endometriosis has over 45,000 members, and Allara’s private community is also a good place to hear from others who may have good tips, remedies, and even recommendations on how to better handle symptoms.

All in all, an endometriosis diagnosis can be extremely stressful, so go easy on yourself. Give yourself the time, grace, and patience you would give a friend who recently got difficult news. Your hormonal health is so important, so whether you feel upset, angry, or confused, accept it all and recognize you are 100% valid in feeling as you do. When you are ready to investigate treatment plans, Allara is here, ready to support you.

Allara Health provides personalized treatment that takes the guesswork out of managing PCOS, and offers a customized, holistic plan of attack that merges nutrition, medication. supplementation, and ongoing, expert support to begin healing your body.