Endometriosis is more common than many realize: researchers believe that at least 11% of women in the United States have endometriosis – yet, many remain undiagnosed as there are no widely available, non-invasive ways to diagnose the condition. In this article we’ll go over the symptoms of endometriosis, diagnostic and treatment options, and the link between endometriosis and infertility.

What is endometriosis?

The American Society for Reproductive Medicine (ASRM) defines endometriosis as:

“A common condition that affects women during the reproductive years. It occurs when tissue similar to the uterine lining (endometrium) attaches to organs in the pelvis and begins to grow. This displaced tissue causes irritation in the pelvis that may lead to pain and infertility”.

If you think you may have endometriosis, consider the symptoms listed below and discuss them with your doctor to identify the best way forward.

What are the symptoms of endometriosis?

Endometriosis can be minimal, mild, moderate or severe, depending on the location, number, size, and depth of endometrial implants (the endometrial tissue that grows outside the uterus). The symptoms of endometriosis vary from person to person. It’s possible to have a mild form of the disease and still experience a lot of pain or have a severe form with only a little discomfort. 

The most common symptoms of endometriosis include:

• Pelvic pain
• Painful periods
• Cramps around ovulation and menstruation 
  • Severe cramping may cause nausea, vomiting, or diarrhea
• Heavy menstrual bleeding or bleeding between periods
• Pain during intercourse (known as dyspareunia)
• Painful or uncomfortable bowel movements
• Lower back pain
• Frequent urination
• Chronic fatigue
• Infertility (more on this below)

It is also possible to have endometriosis and not experience any symptoms.

What are the risk factors of endometriosis?

While endometriosis affects around 176 million patients worldwide, there is still no consensus as to why a patient may develop this condition. That said, there are certain factors that may make you more susceptible to endometriosis. These include:

–       Genetic Connection: you are more likely to have endometriosis if a first-degree relative, such as your mother, aunt, or sister has the disease. It is advisable to notify your doctor if you discover that this is the case

–       Age: endometriosis most commonly affects women in their 30s and 40s, however it has also been documented in teenagers, including those who haven’t had a period yet, and in those who have had hysterectomies and are post-menopausal

–       Pregnancy and Birth: women who do not have children or those who are giving birth for the first time after age 30 are at an increased risk of getting endometriosis. Pregnancy can temporarily decrease symptoms, although women who have had children can still experience endometriosis pain

–       Menstrual Cycle: according to Women’s Health, those with menstrual periods that last more than 7 days, and those with menstrual cycles shorter than 27 days are more at risk of endometriosis

How is endometriosis diagnosed?

The path to an endometriosis diagnosis is often long. According to Speakendo, it can take anywhere from 6 to 10 years to properly diagnose the condition. 1 out of 3 women consult 3 to 4 physicians before receiving an accurate diagnosis. This is because symptoms are often dismissed as ‘just bad periods’, and because endometriosis symptoms are often similar to the symptoms of other diseases. 

As mentioned, your first step towards diagnosis is to see your gynecologist. Explain your symptoms and describe their impact on your day-to-day life. Your gynecologist will perform a pelvic exam to feel for any cysts or scars. Sometimes, an ultrasound can also show ovarian cysts from endometriosis although this is not always the case. At this stage, your doctor may also suggest a blood test to rule out any other conditions. A CT scan and an MRI are two other non-invasive procedures that can be used when diagnosing endometriosis.

While your gynecologist may suspect endometriosis from these initial checks, only surgery can confirm whether or not you have endometriosis. This surgery is known as a laparoscopy. As the ASRM explains, a laparoscopy is “an outpatient surgical procedure that enables the physician to see the pelvic organs and look for endometriosis”. A thin camera is inserted into the abdomen through a small incision near the navel. The surgeon may decide to treat your endometriosis during the laparoscopy, in which case surgical instruments are inserted through additional small incisions. During the procedure, your doctor can also determine if the fallopian tubes are open (the buildup of tissue from endometriosis can scar or block the fallopian tubes, preventing the egg and sperm from meeting).

Treatment options for endometriosis

There is no known cure for endometriosis, but there are treatments available that can help you manage the pain. These include:

• Lifestyle Changes: exercise and relaxation can, in some cases, reduce the pain of endometriosis
• Hormonal Contraceptives: your doctor may prescribe birth control pills without pauses for menstrual periods
• Progestins: progestins are synthetic medications that act like progesterone and which can reduce pelvic pain from endometriosis. These may be prescribed as pills, injections, or levonorgestrel-containing IUDs
• Gonadotropin-Releasing Hormone (GnRH) Analogs: these cause estrogen levels to fall to menopausal levels, stopping menstruation. GnRH are highly effective for painful endometriosis
• Surgery: a laparoscopy is used to treat recurrent endometriosis when the goal is to preserve future fertility. A hysterectomy with removal of the ovaries is used to definitively treat endometriosis in women who have completed their family

Does endometriosis impact fertility? 

The ASRM notes that endometriosis may be found in 24% to 50% of women who experience infertility. Endometriosis can impact your monthly fertility rate: “infertility patients with untreated mild endometriosis conceive on their own at a rate of 2% to 4.5% per month, compared to a 15% to 20% monthly fertility rate in couples without this or any other infertility diagnosis. Infertility patients with moderate and severe endometriosis have monthly pregnancy rates of less than 2%.”

Adhesions and scar tissue from endometriosis can distort or damage the ovaries and fallopian tubes, making it difficult to achieve pregnancy and increasing the risk of an ectopic pregnancy. As noted by RESOLVE, inflammatory agents from the disease can also impact egg quality, fertilization and implantation. It is also a possibility that the immune system, which normally protects the body against disease, attacks the embryo instead.

Fortunately, treatment for endometriosis continues to advance. In addition, although strongly associated with infertility, not all women with endometriosis are infertile. Many with the condition are able to manage it and get pregnant – some with fertility treatment and others with multidisciplinary care, including pelvic floor therapy, and nutritional guidance. If you’ve already tried multiple treatment options and are still having trouble getting pregnant, you may be asked to consider two fertility treatment options:

• Controlled ovarian stimulation and intrauterine insemination, also known as superovulation with IUI
• In Vitro Fertilization (IVF) – According to the ASRM, IVF is the most effective treatment for moderate or severe endometriosis, especially in cases where surgery fails to restore fertility

Your fertility provider can create an individualized plan to best address your case.

In Conclusion

Getting a clear endometriosis diagnosis and receiving treatment can be a lengthy journey. It’s important that you are surrounded by the right healthcare and fertility professionals who can listen to your concerns and map out a way forward in line with your family building plans.

At GoStork, we’re here to support you in your search for the best fertility clinic. Our Fertility Clinic Marketplace contains in-depth profiles for fertility centers spanning over 100 locations (and growing quickly!). You can view clinics’ experience, costs, and success rates, distilled to your specific case and compared to the national average, and then book consultations directly on the platform. GoStork is 100% free to use. Find your ideal fertility clinic at gostork.com.