What is endometriosis?
Endometriosis is a disease that affects one of the most unrecognised parts of a woman’s life, her period. It is a very personal and intimate aspect of women’s health and can be thought of as a disease of menstruation. Endometriosis occurs when tissue similar to the lining of the uterus (endometrium), is found in regions outside of the uterus, in other words, where the tissue should not be. It affects around one in every ten women and is mostly unrecognisable, misdiagnosed, and mistreated. Currently, there is no known cause of endometriosis.
Where can endometriosis be found?
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.
in women over 20
Who is affected by endometriosis?
Endometriosis affects women mostly in their reproductive years (25-35 years old), which are arguably their most productive years, and can even affect those in their youth, starting as early as the age of 11.
What is the impact of endometriosis from a global perspective?
Endometriosis can impact all aspects of life– school, careers, finances, relationships, and overall well being. Approximately 176 million women worldwide are impacted by this disease, and an estimated 1 out of 10 women suffer in the United States, however many remain undiagnosed. Endometriosis affects women equally across all racial/ethnic and socioeconomic backgrounds.
- “Killer cramps”
- Long periods
- Heavy menstrual flow
- Bowel and urinary disorders
- Nausea and/or vomiting
- Pain during sexual activities
- Chronic fatigue
What are the possible causes of endometriosis?
While multiple theories regarding the cause of endometriosis exist, there has been no proven cause that can adequately explain every aspect of endometriosis. Below are some of the proposed theories and beliefs regarding endometriosis:
- Sampson’s Theory suggests that retrograde menstruation (the backward flow of menstrual debris) plays a part in causing 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.
- Meyer’s theory has also shown that endometriosis can be present during fetal development and may simply be activated at puberty when estrogen levels increase in the body and periods begin.
- Endometriosis is not contagious and cannot be passed from person to person through contact.
- There is likely a genetic component to endometriosis. Girls who have a close female relative are 5 to 7 times more likely to have it themselves, but more research is necessary to fully understand the genetic characteristics of endometriosis.
- The immune system and the body’s inflammatory response also contribute to endometriosis, although these mechanisms are poorly understood.
How can endometriosis be diagnosed?
- Laparoscopy & Pathology Report: The only way to verify endometriosis is to undergo a diagnostic laparoscopy with pathology confirmation of biopsy specimens.
- Lab testing does not test for endometriosis: There is no test for endometriosis, meaning patients cannot have their blood, urine, or saliva tested to confirm the disease. Using anti-mullerian hormone (AMH) as a marker for ovarian reserve and fertility, and in turn, a suspicion for endometriosis, is a connection starting to be proposed amongst the scientific community, but more research is certainly needed to see if this could be employed in labs. It is a subject of study as AMH is the primary hormone released during folliculogenesis, which is the making and releasing of follicular cells that go on to be mature eggs in the ovaries. Thus, it is of great interest to reproductive specialists, with a possible connection to endometriosis.
- Imaging testing is helpful but not definitive: Despite popular opinion, clear evidence of endometriosis is not visible through computed tomography (CT), magnetic resonance imaging (MRI), or even ultrasounds. While imaging tests, pelvic exams, especially rectovaginal exams, can all indicate suspicion of endometriosis, they cannot confirm it. Nevertheless, it is common practice to obtain a pelvic ultrasound and MRI before undergoing laparoscopic surgery for endometriosis.
- The big issue at hand: It takes on average 10 years from symptom onset to receive an accurate diagnosis of endometriosis in the United States. 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. This is why it is so crucial to spread further awareness of the disease and support research and funding.
What are the treatment options?
- The gold standard of treatment for endometriosis is minimally invasive laparoscopic excision surgery, keeping in mind a few of the below details.
“Deep-excision”: Deep-excision is performed during laparoscopic excision surgery, where the surgeon carefully excises or removes, the ENTIRE lesion from wherever it is found. This includes the tissue beneath the surface. Endometriosis acts like an iceberg – despite the disease being identified above the surface of the tissue, the majority is implanted into the tissue below the surface. This is why it is so important to find a surgeon who removes lesions in their entirety. For information about identifying a proper excision surgeon and preparing for your visit to the doctor please visit this page.
- “Cold-excision”: It is ideal to have surgery with minimal use of heat and electricity. Often times, surgeons will use techniques such as ablation (lasers that destroy the disease) or cauterization (burning off the disease) to “burn off and destroy” endometriosis lesions. However, this increases the chance of not fully removing the endometriosis lesions and risks damaging the surrounding healthy tissue. This does not mean that lasers and high-energy devices cannot be used during surgery, as they can often be helpful for coagulation (stopping bleeding), but they should not be used for removing lesions themselves.
- Other forms of surgery: To reiterate, 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 due to the high energy and heat applied to surrounding healthy tissue. In many cases, the inflammation following ablation and cauterization can be another source of pain. This is why excision surgery is the gold standard for treatment. If a patient is considering surgery, it is important that they ask their surgeon the method for removal.
- Hysterectomy: It is a common myth that having a hysterectomy will cure endometriosis. There is no cure for endometriosis and a hysterectomy is rarely the best treatment. Most endometriosis is located in areas other than the reproductive organs. If you simply remove the uterus and do not excise the remaining lesions, the patient will continue to have pain. Decisions regarding a hysterectomy should be made with a doctor experienced in treating endometriosis and should only be performed if agreed upon by the patient. For more information, see “Endometriosis and Hysterectomy.”
How can symptoms be managed?
- Treating the symptoms, not the cause: There are many ways of improving endometriosis relief, but it must be noted that these forms of treatment do not treat the endometriosis itself, but rather serve to alleviate some of the symptoms caused by the condition. These include:
- Low-Dose Oral Contraceptives
- Hormonal intra-uterine device (UD) (Rather than copper)
- Painkillers such as non-steroidal anti-inflammatory drugs (NSAIDs)
- Gonadotropin-releasing hormone (GnRH) therapy, such as Lupron
- Changes in diet
- Not everyone is the same: While all of the above options could be helpful to relieve symptoms, every patient will benefit differently from each treatment. What may work for one woman, may not for another. Endometriosis is a disease that still requires much more research and knowledge.It is crucial for each patient to trust her own judgment, work with her physician, and find the pain management strategy that works best for her if she decides to explore alternative treatment measures.
What To Do Next If You Think You Have Endometriosis?
1st: Get Informed
My biggest advice for you where ever you are based in the world is to watch the docu-film ‘Endo What’ it literally changed my life. I have watched it now 4 times, every time I cry, take notes, pause to take it all in, and invite my fellow endo sisters round so they can take it all in as well. You will feel educated, empowered, sad, acknowledged, mad and then go through it all over again! Click this link to watch the full film.
2nd: Read Up
- The Doctor Will See You Know by Tamer
- One Part Plat by Jessica Murnane
- Endometriosis: A Key To Healing Fertility Through Nutrition
- Seckin Endometriosis Center Endometriosis Resource: drseckin.com
- Sampson, J.A., Metastatic or Embolic Endometriosis, due to the Menstrual Dissemination of Endometrial Tissue into the Venous Circulation. Am J Pathol, 1927. 3(2): p. 93-110 43.
- D’Hooghe, T.M., et al., Endometriosis and subfertility: is the relationship resolved? Semin Reprod Med, 2003. 21(2): p. 243-54.
- Goud, P.T., et al., Dynamics of nitric oxide, altered follicular microenvironment, and oocyte quality in women with endometriosis. Fertil Steril, 2014. 102(1): p. 151-159 e5.
- Seckin, T., The Doctor Will See You Now: Recognizing and Treating Endometriosis. 2016.