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.
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.
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.
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. 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.
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
Symptoms of Endometriosis
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 is 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 where tissue grows, as well as the extent of scarring and 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 causes cysts)
- Inflammation
- Scar tissue
- Problems in your intestines and bladder
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:
1. 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.
2. 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.
3. 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.
4. CT Scan
This is another noninvasive imaging technology that uses a combination of X-rays and computers to create images of the body that detect abnormalities (which would not show up on a normal X-ray).
5. 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.
Endometriosis Stages
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.
After the Diagnosis: 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:
1. 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.
2. Surgical Treatment
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.
3. Fertility Treatment
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.
Next Steps if You Think 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 at 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
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. 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.
2. Talk with Your Doctor
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.
3. Consider Making an Appointment with a Specialist
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.
4. Be Proactive About Getting the Support You Need
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. 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 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.