Written By: Dr. Eric Surrey, a board-certified reproductive endocrinologist and infertility specialist at CCRM Fertility of Colorado.
What is Endometriosis?
Endometriosis, or “endo,” is a condition in which tissue similar to the endometrium (lining of the uterus) grows outside of the uterus. These growths are known as implants or lesions and can grow anywhere in the body, but are typically located in the pelvic area, including the ovaries, fallopian tubes, and behind the uterus.
During your menstrual cycle, the endometrial lining thickens, sheds and is expelled during your period. Endometriosis lesions located outside of the uterus also shed, but they have no way of leaving the body. This can lead to scar tissue, cysts, inflammation, resulting in pain and infertility.
What are Symptoms of Endometriosis?
Endometriosis symptoms can range from no symptoms to mild pain with periods to debilitating pain both during periods and at other times of the cycle, as well as pain with intercourse, bowel movements, and urination. Endometriosis is also a leading cause of infertility even when there are no other symptoms present.
How Common is Endometriosis?
Endometriosis affects roughly 11% of reproductive age women in the United States, and it is also found in teenagers and adolescents. Unfortunately, many women aren’t diagnosed with endometriosis until problems with fertility arise or they have suffered with severe pain for many years, so this statistic is probably an underestimate. According to recent studies, it can take five to ten years and visits with more than five health care providers before endometriosis is diagnosed.
How Do I Know if I Have Endometriosis?
Laparoscopic surgery is the only definitive way for your doctor to confirm you have endometriosis. An experienced doctor, however, can make a diagnosis of “clinically suspected” endometriosis and consider less invasive forms of treatment depending on the patient’s goals (reducing pain, conception, etc.).
In instances where laparoscopic surgery is performed, your doctor will explore the severity of your condition and will classify your endometriosis, which can help guide treatment options.
How is Endometriosis Classified?
Although there is no universal agreement on how to characterize or classify endometriosis, the American Society of Reproductive Medicine (ASRM) classification system for endometriosis is widely used by doctors. Keep in mind this classification was designed to predict fertility and not severity of pain and only take surgical findings into account, not symptoms.
Staging is based on the number and size of lesions, as well as where they’re located and how deep they are in the tissues. For instance, stage 1 endometriosis is considered “minimal,” but it doesn’t mean you have no pain or very few symptoms. These stages also use a points rating. The higher the score, the more severe your endometriosis. It is important to understand that many studies have shown that the extent of endometriosis does not correlate with symptoms, and that there is not much evidence as to the likelihood that untreated endometriosis will progress or regress.
The Four Stages of Endometriosis include:
- Stage 1 (Point score 5 or less): In stage 1 or “minimal” endometriosis, lesions, or implants, are small and superficial, meaning they’re close to the surface of the tissues. There may not be any scar tissue, or it is minimal.
- Stage 2 (Point score 6 to 15): Stage 2, or “mild” endometriosis means there are more lesions, and they tend to be located deeper inside the tissue. There might be scar tissue, but there isn’t usually inflammation present.
- Stage 3 (Point score 16 to 40): Stage 3, or “moderate” endometriosis means there are numerous deep endometrial implants. There can be endometrial cysts in at least one of the ovaries which are commonly called endometriomas or chocolate cysts. These cysts form when implants attach to the ovary and when this tissue sheds, they leave behind old brown blood which collects within a capsule and can grow and rupture which can result in very severe pain. Thin bands of scar tissue known as filmy adhesions can form. These can fuse organs together.
- Stage 4 (Point score 40 or more): In Stage 4, or “severe” endometriosis, there are many deep endometrial implants. Implants can be located on the fallopian tubes and bowels. Adhesions can be thick and dense, and they can cause severe pain. There may also be numerous large cysts on the ovaries, but they can also be found behind the uterus and rectum. These cysts can cause abdominal pain, constipation, nausea, and painful bowel movements along with significant pain with urination and intercourse. The distortion of the pelvic anatomy classically leads to infertility.
Surgical Treatment for Endometriosis
The classical therapy for endometriosis has been surgical intervention. This is typically performed in a minimally invasive manner through laparoscopy. The adhesions are removed and the lesions are either destroyed with various energy sources (e.g. cautery, laser, among others) or excised.
The only effective treatment for ovarian cysts is surgical removal. Drainage or drug therapy is not effective in this circumstance. Very extensive stage 4 endometriosis involving the bowel and ureters (tubes that bring urine from the kidney to the bladder) requires extensive surgery that should only be performed by a highly skilled specialist in endometriosis surgery and may require the assistance of a bowel surgeon and/or urologist. For individuals who do not respond to less invasive surgery or medical therapy and whose child-bearing is complete, hysterectomy represents an ultimate option.
Noninvasive Endometriosis Treatment Options
While endometriosis cannot be cured, the symptoms of the condition can be managed with a variety of treatment options. For women with pelvic pain suggestive of endometriosis, the typical first line of therapy is to use birth control pills and non-steroidal anti-inflammatory drugs, such as ibuprofen or naproxen. If they’re effective at managing your endometriosis symptoms, birth control pills can usually be continued until you’re ready for pregnancy. Birth control pills are typically given continuously without taking a break for the “off week.”
If birth control pills aren’t helpful, additional treatment options include hormone (progestin)-containing IUDs, high doses of oral or injectable progestins (synthetic progesterone), or an injectable GnRH agonist. A recently FDA approved oral GnRH antagonist, elagolix, is effective at reducing pain associated with endometriosis and is a more tolerable alternative with less side effects. Each of these approaches should show benefit within one to three months and can be used for varying time periods.
Complementary therapies, such as acupuncture, herbal therapy, and pelvic floor physical therapy, may also benefit some women with pain due to endometriosis.
There are pros and cons of each approach, which need to be discussed in detail with your doctor to help develop a treatment plan that’s best for you. In addition, many forms of medical therapy have been shown to decrease symptom recurrence rates after surgery.
Endometriosis Treatment for Infertility
For women with endometriosis who are having difficulty conceiving, comprehensive fertility testing and a full evaluation is completed first. Potential treatment options include surgery, which is slightly beneficial for fertility or moving more aggressively to intrauterine insemination (IUI), or in vitro fertilization (IVF).
Unfortunately, the medical treatments of symptomatic endometriosis mentioned earlier have not been shown to improve pregnancy rates except for use of certain agents just before embryo transfer in IVF, and the benefit of surgical intervention on improving pregnancy rates is controversial and depends on the specific circumstances including extent of disease and nature of the surgical technique. (Learn more about the research trial CCRM Fertility is currently conducting on the benefits of elagolix during IVF.)
If you suspect you have endometriosis or have questions about your condition and how it might impact your ability to conceive, don’t hesitate to make an appointment with a CCRM Fertility specialist today.