- It occurs when tissue similar to the endometrium (the lining of the uterus) is found outside the uterus on other parts of the body.
- It affects girls and women during their most productive years, and can impact all aspects of their lives – school, careers, finances, relationships, and overall well being.
- Generally, endometriosis is found in the pelvic cavity. It can attach to any of the female reproductive organs (uterus, fallopian tubes, ovaries), the uterosacral ligaments, the peritoneum, or any of the spaces between the bladder, uterus/vagina, and rectum. Endometriosis can also be found, though less commonly, on the bladder, bowel, intestines, appendix or rectum.
- Many aspects of endometriosis are misunderstood and require further research. Specifically, it is critical to define the different types of endometriosis and to understand their cause to carryout appropriate treatment.
Click here to hear EFA Co-Founder, Dr. Tamer Seckin, talk about historical understandings of endometriosis through time.
There are many symptoms of endometriosis, but not everyone will experience all, most or even any of the symptoms. Most commonly endometriosis patients experience pelvic pain. Pain usually coincides with menstruation, but some women may have symptoms throughout their entire cycle.
The other symptoms will vary depending on where the endometriosis lesions are growing, but may include:
- “Killer cramps” – cramps that do not go away with NSAIDS and/or impede the activities of daily living
- Long periods – periods that last longer than 7 days
- Heavy menstrual flow – having to change your pad or tampon every hour to two hours throughout most of your period
- Bowel and urinary disorders – including but not limited to painful urination or bowel movements, frequent urge to urinate, or diarrhea
- Nausea or vomiting
- Pain during sexual activities
Over time, cyclic inflammation causes the scar tissue and adhesions to build up around the lesion, giving the impression of the lesion increasing in size. These may cause their own issues, such as organs which are bound together or anatomy that is moved out of place.
Some women do not realize they have endometriosis until they try to become pregnant. Approximately 30-40% of women who have endometriosis experience issues with their fertility. However, studies have shown that fertility may improve after undergoing excision surgery to treat endometriosis.
Epidemiology and Disease Patterns
- Endometriosis affects 176 million women worldwide, and 1 in 10 girls and women in the US.
- Endometriosis usually causes symptoms during reproductive years (~12-60 years old), however many women and girls are undiagnosed.
- Endometriosis affects women equally across all racial/ethnic and socioeconomic backgrounds.
- As of now, researchers have not identified one specific cause for endometriosis. Multiple theories exist but none can adequately explain every aspect of endometriosis.
- Endometriosis is not contagious and cannot be passed from person to person through contact.
- We do know that there may be a genetic component to endometriosis. Girls who have a close female relative are 5-7x more likely to have it themselves, but more research is necessary to fully understand the genetic characteristics of endometriosis.
- For many years, doctors believed that retrograde menstruation was the main cause of endometriosis. However, it is now understood that 90% of women have retrograde menstruation and only 1 in 10 have endometriosis. More research is required to determine why retrograde menstruation affects women differently.
- Research has also shown endometriosis can be present during fetal development and may simply be activated at puberty when estrogen levels increase in the body. Autopsies performed on infants have shown evidence of endometriosis.
- The immune system and the body’s inflammatory response also contribute to endometriosis, although the mechanisms are poorly understood.
- On average in the US, it takes 10 years from symptom onset to receive an accurate diagnosis of endometriosis. This is due to a lack of knowledge among the general public and medical community. Unfortunately, many endometriosis patients are misdiagnosed, often multiple times, leading to unnecessary and inappropriate treatment.
- Despite popular opinion, evidence of endometriosis is not visible on CTs, MRIs, or even ultrasounds. Pelvic exams, especially rectovaginal exams, can indicate high suspicion of endometriosis but cannot confirm it.
- There is no test for endometriosis, meaning patients cannot have their blood, urine, or saliva tested to confirm the disease. The only way to verify endometriosis is to undergo a diagnostic laparoscopy with pathology confirmation of biopsy specimens.
- The gold standard treatment for endometriosis is laparoscopic excision surgery. During laparoscopic excision surgery, the surgeon will carefully excise, or remove, the entire lesion from wherever it grows. This includes the tissue beneath the surface. Endometriosis acts like an iceberg, where the disease is both above the surface and in the tissue below. Excision surgery removes the disease both above and below the surface.
- Other types of surgery include ablation or cauterization. Both of these only remove the tissue on the surface but neglect the tissue growing beneath the surface. In most cases, ablation/cauterization surgery will not be effective for long-term management of endometriosis because the tissue remains below the surface. Excess scar tissue can also form using these methods. In many cases, the inflammation following ablation and cauterization can be another source of pain.
- It is a common myth that having a hysterectomy will cure endometriosis. Unfortunately, there is no cure for endometriosis and a hysterectomy is rarely the best treatment. Most endometriosis grows on areas other than the reproductive organs. If you simply remove the uterus and do not excise the remaining lesions, the woman will continue to have pain. Decisions regarding a hysterectomy should be made with a doctor experienced in treating endometriosis.
There are many options for slowing disease progression and improving symptom manifestation. These can include:
- Low-Dose Oral Contraceptives
- IUD (Hormonal not copper)
- Pain killers (NSAIDs)
- GnRH Therapy (such as Lupron)