Updated: Nov 17
Although it is estimated that one out of ten women suffers from Endometriosis (Greene et al. 2016; Giudice und Kao 2004) the general public has only little awareness for this condition. This article shall provide an overview on the topic of Endometriosis. At the bottom of the page you’ll find links to relevant websites for further information.
What is Endometriosis?
Endometriosis is a condition in women which leads to the presence of endometrium-like cells outside of the uterus. But what does that mean exactly? Well, normally the endometrium represents the inner lining of the uterus. During the female cycle the endometrium grows and then detaches itself during the menstruation. Women suffering from endometriosis have endometrium-like groups of cells outside of the uterus, mainly on the ovaries, the fallopian tubes or the vagina (Giudice und Kao 2004). There are also cases where endometrial cells can be found in the rectum, the abdomen or the lungs (Peiris et al. 2018).
What are the symptoms of endometriosis?
The aforementioned endometrium-like groups of cells are prone to inflammation, cysts can develop as well as adhesions or scar tissue (Peiris et al. 2018). Common symptoms of Endometriosis are excessive pain during menstruation (also known as Dysmenorrhea), pelvic pain independent of menstruation, pain during or after sex, pain with bowel movements or urination, excessive bleeding. Endometriosis can also affect fertility leading to difficulties while trying to get pregnant or even infertility. Other possible symptoms are fatigue, diarrhoea, nausea, bloating, constipation, fainting, etc. (Falcone und Flyckt 2018).
Endometriosis can manifest itself in multiple ways depending also on the localisation of the endometrial cells. This wide range of symptoms makes it difficult to find the accurate diagnosis. Not every woman shows every symptom, and a lot of the symptoms are associated with other diseases such as Irritable Bowel Syndrome (IBS) or Pelvic Inflammatory Disease (Ballard et al. 2008). In fact, a study conducted in Germany and Austria found that approximately 70% of women with a diagnosis of endometriosis had at least one prior misdiagnosis (Hudelist et al. 2012).
Where does Endometriosis come from?
The simple and yet disappointing answer to this question is: We don’t know.
So far, the mechanisms of how Endometriosis develops are not fully understood (Ballard et al. 2008). There seems to be a genetic component: women who have first degree relatives who suffer from Endometriosis have six time higher chances to suffer from Endometriosis in comparison with women whose first degree relatives don’t suffer from Endometriosis (Giudice und Kao 2004).
For the time being, the most prominent hypothesis discerns retrograde menstruation as one of the factors causing Endometriosis (Zondervan et al. 2018). In an event of retrograde menstruation the endometrial cells are not only shed through the vagina (so the common way), but they also go into the abdominal cavity through the fallopian tubes (Halis et al. 2010). It is estimated that 90% of women of reproductive age experience retrograde menstruation. There seem to be other mechanisms involved that cause Endometriosis otherwise the number of women affected by it would be even higher (Halis et al. 2010; Greene et al. 2016; Zondervan et al. 2018).
How is Endometriosis diagnosed?
Unfortunately, the most reliable form of diagnosis is a laparoscopy, which is a form of minimally invasive surgery (Ulrich et al. 2014; Abbas et al. 2012). During the laparoscopy the surgeon makes small incisions in the abdomen and inserts a laparoscope, a small tube with a light and a camera at the end. Through the laparoscope, the surgeon can actually see the endometrial cells. Before doing the surgery, patient and doctor should have extensive talks about the patient's history and ongoing symptoms and the doctor should do an exam of the pelvis (Peiris et al. 2018). Most importantly, the doctor needs to take the patient and the symptoms seriously and not dismiss them as “normal” menstruation symptoms. Normalization of Endometriosis symptoms as well as misdiagnosis (see aforementioned passage) are the main reasons why the average delay between symptom start and accurate diagnosis is 10 years in Germany and Austria (Hudelist et al. 2012).
How can we treat it?
So, you now have an idea about what Endometriosis is, which symptoms to look out for, even about the ways to diagnose it. But once the diagnosis is made, what can actually be done about it? The sobering truth is that there is no cure for Endometriosis for the time being. There are different forms of treatments aiming to alleviate the symptoms. In this section you are going to find information about treatments in Orthodox Medicine as well as Complementary and Alternative Medicine.
Orthodox Medicine focuses on alleviating symptoms. The following treatment options are aiming to manage the pain.
To relieve pain, oral contraceptive pills (also known as “the pill”) are often used. The pill limits the production of oestrogen which is responsible for the growth of the endometrium (The Practice Committee of the American Society for Reproductive Medicine 2014). This way, less endometrial tissue is built and therefore the risk of inflammation of these tissues is lowered (Peiris et al. 2018). An alternative to the pill are progestogen pills, contraceptive injections or an implant (Meresman 2002). There are some side effects associated with the use of the pill, so if you want to know more, ask your gynaecologist about your options and try to find the “best fit”.
An alternative to the contraceptive pills are GnRH agonists and antagonists. GnRH stands for gonadotropin releasing hormone – wow that sounds complicated, what is that?
Well, gonadotropin is a class of glycoprotein polypeptide hormones formed in our brain which act on the gonads (testes and ovaries). In other words, in women gonadotropins are responsible for the production of oestrogen, the maturing of the egg, the ovulation, etc
Gonadotropin production is controlled by gonadotropin-releasing hormone, which is released by the hypothalamus. Through the use of GnRH agonists and antagonists it is possible to put the body into a low oestrogen state resulting in no ovulation and, as explained earlier, less growth of the endometrium (Sagsveen et al. 2003). Putting the body into a low oestrogen state can have serious side effects and if you’re thinking about this treatment, ask your doctor to educate you about all the possible outcomes.
Another way to reduce the pain due to Endometriosis is the use of painkillers with anti-inflammatory qualities, e.g. Ibuprofen or Paracetamol.
Surgery can also represent a form of treatment. During laparoscopy the endometrial tissue outside of the uterus can be removed manually. This can lead to a reduction of the pain. But it requires great skill on the part of the surgeon. If endometrial-like cells are left behind and not everything is removed, there is a big risk of recurrence (Peiris et al. 2018). In very serious cases of Endometriosis, if the laparoscopy and other treatments haven’t helped so far and the patient doesn’t want any (more) children, a hysterectomy can be performed. This refers to the removal of the uterus. It is a major surgery that can impact the body in a considerable way. Hormone treatment is often prescribed after this kind of surgery. This is also valid for the laparoscopy.
This list is just supposed to give you an overview on possible treatments. Please ask your doctor for more in-depth information about possible treatments.
Complementary and Alternative Medicine
Along the aforementioned treatments in Orthodox Medicine there are treatments which are considered as complementary or alternative to these. The most important ones are Cognitive Behavioural Therapy (CBT), nutrition and Traditional Chinese Medicine (TCM). Given that there will be a more extensive article about nutrition and Endometriosis; this part will only deal with CBT and TCM.
CBT is a form of behavioural psychotherapy. It aims to reduce dysfunctional thoughts, attitudes, and convictions, and through this lead to a change in behaviour. For women with Endometriosis, CBT endeavours to help with the pain management (Evans et al. 2019; Stabolidis et al. 2020). Through different techniques like education about the pain, cognitive restructuring, motivational approaches, goal setting, but also relaxation and mindfulness techniques the patient is taught to cope with their pain and to understand their reaction mechanisms towards pain (Stabolidis et al. 2020). It is of extreme importance that women with Endometriosis include CBT into their treatment (Halis et al. 2010). Endometriosis and the chronic pain that can come from it can have a serious impact, not only on a physiological level but also on a psychological and social level (Dydyk und Gupta 2020; Stabolidis et al. 2020). Approximately 75% of women with Endometriosis report less quality of life than a healthy woman of the same age (Simoens et al. 2012). CBT can not only reduce the pain but also improve the quality of life (Evans et al. 2019; van Niekerk et al. 2019).
There are many forms of TCM that might help alleviate the pain due to Endometriosis. Possible forms of TCM treatments are herbal treatments, acupuncture and acupressure. Still, it is important to say that though there are some promising studies concerning TCM and Endometriosis there is no clinical consensus about the effects of TCM on pain related to Endometriosis (Kong et al. 2014; Ulrich et al. 2014; Dunselman et al. 2014) and TCM is not yet recommended in official guidelines (Dunselman et al. 2014; Ulrich et al. 2014). If you’re interested in TCM and would like to try it out, please consult your doctor beforehand, as there could be side effects (Kong et al. 2014).
Other forms of therapy that might help in relieving the pain are physiotherapy, yoga, magnesium, etc. In the process of finding the right form of treatment for you, it is important to be completely honest with your doctor. If you feel very uncomfortable about a treatment choice, let them know at once, only then can they adjust the treatment to the current situation.
Phew, you made it to the end of the article and still have a lot of questions (or maybe you have even more questions than before)? Here, you can find some helpful addresses that may help you in finding some answers.
Endometriose-Vereinigung Deutschland e.V.
Abbas, Sascha; Ihle, Peter; Köster, Ingrid; Schubert, Ingrid (2012): Prevalence and incidence of diagnosed endometriosis and risk of endometriosis in patients with endometriosis-related symptoms. Findings from a statutory health insurance-based cohort in Germany. In: European journal of obstetrics, gynecology, and reproductive biology 160 (1), S. 79–83. DOI: 10.1016/j.ejogrb.2011.09.041.
Ballard, K. D.; Seaman, H. E.; Vries, C. S. de; Wright, J. T. (2008): Can symptomatology help in the diagnosis of endometriosis? Findings from a national case-control study--Part 1. In: BJOG : an international journal of obstetrics and gynaecology 115 (11), S. 1382–1391. DOI: 10.1111/j.1471-0528.2008.01878.x.
Dunselman, G. A. J.; Vermeulen, N.; Becker, C.; Calhaz-Jorge, C.; D'Hooghe, T.; Bie, B. de et al. (2014): ESHRE guideline. Management of women with endometriosis. In: Human reproduction (Oxford, England) 29 (3), S. 400–412. DOI: 10.1093/humrep/det457.
Dydyk, Alexander M.; Gupta, Nishant (2020): StatPearls. Chronic Pelvic Pain. Treasure Island (FL).
Evans, Subhadra; Fernandez, Stephanie; Olive, Lisa; Payne, Laura A.; Mikocka-Walus, Antonina (2019): Psychological and mind-body interventions for endometriosis. A systematic review. In: Journal of psychosomatic research 124, S. 109756. DOI: 10.1016/j.jpsychores.2019.109756.
Falcone, Tommaso; Flyckt, Rebecca (2018): Clinical Management of Endometriosis. In: Obstetrics and gynecology 131 (3), S. 557–571. DOI: 10.1097/AOG.0000000000002469.
Giudice, Linda C.; Kao, Lee C. (2004): Endometriosis. In: The Lancet 364 (9447), S. 1789–1799. DOI: 10.1016/S0140-6736(04)17403-5.
Greene, Alexis D.; Lang, Stephanie A.; Kendziorski, Jessica A.; Sroga-Rios, Julie M.; Herzog, Thomas J.; Burns, Katherine A. (2016): Endometriosis. Where are we and where are we going? In: Reproduction (Cambridge, England) 152 (3), R63-78. DOI: 10.1530/REP-16-0052.
Halis, Gülden; Mechsner, Sylvia; Ebert, Andreas D. (2010): The diagnosis and treatment of deep infiltrating endometriosis. In: Deutsches Arzteblatt international 107 (25), 446-55; quiz 456. DOI: 10.3238/arztebl.2010.0446.
Hudelist, G.; Fritzer, N.; Thomas, A.; Niehues, C.; Oppelt, P.; Haas, D. et al. (2012): Diagnostic delay for endometriosis in Austria and Germany. Causes and possible consequences. In: Human reproduction (Oxford, England) 27 (12), S. 3412–3416. DOI: 10.1093/humrep/des316.
Kong, Sai; Zhang, Yue-Hui; Liu, Chen-Fang; Tsui, Ilene; Guo, Ying; Ai, Bei-Bei; Han, Feng-Juan (2014): The complementary and alternative medicine for endometriosis. A review of utilization and mechanism. In: Evidence-based complementary and alternative medicine : eCAM 2014, S. 146383. DOI: 10.1155/2014/146383.
Meresman, G. (2002): Oral contraceptives suppress cell proliferation and enhance apoptosis of eutopic endometrial tissue from patients with endometriosis. In: Fertility and sterility 77 (6), S. 1141–1147. DOI: 10.1016/s0015-0282(02)03099-6.
Peiris, Alan N.; Chaljub, Ellen; Medlock, Dillon (2018): Endometriosis. In: JAMA 320 (24), S. 2608. DOI: 10.1001/jama.2018.17953.
Sagsveen, M.; Farmer, J. E.; Prentice, A.; Breeze, A. (2003): Gonadotrophin-releasing hormone analogues for endometriosis. Bone mineral density. In: The Cochrane database of systematic reviews (4), CD001297. DOI: 10.1002/14651858.CD001297.
Simoens, Steven; Dunselman, Gerard; Dirksen, Carmen; Hummelshoj, Lone; Bokor, Attila; Brandes, Iris et al. (2012): The burden of endometriosis. Costs and quality of life of women with endometriosis and treated in referral centres. In: Human reproduction (Oxford, England) 27 (5), S. 1292–1299. DOI: 10.1093/humrep/des073.
Stabolidis, Arthur; Bryant, Christina; Wadley, Greg; Phillips, Lisa (2020): CBT-based App for Women Experiencing Chronic Pelvic Pain. A Pilot Study (Preprint).
The Practice Committee of the American Society for Reproductive Medicine (2014): Treatment of pelvic pain associated with endometriosis. A committee opinion. In: Fertility and sterility 101 (4), S. 927–935. DOI: 10.1016/j.fertnstert.2014.02.012.
Ulrich, U.; Buchweitz, O.; Greb, R.; Keckstein, J.; Leffern, I. von; Oppelt, P. et al. (2014): National German Guideline (S2k). Guideline for the Diagnosis and Treatment of Endometriosis: Long Version - AWMF Registry No. 015-045. In: Geburtshilfe und Frauenheilkunde 74 (12), S. 1104–1118. DOI: 10.1055/s-0034-1383187.
van Niekerk, Leesa; Weaver-Pirie, Bronwyn; Matthewson, Mandy (2019): Psychological interventions for endometriosis-related symptoms. A systematic review with narrative data synthesis. In: Archives of women's mental health 22 (6), S. 723–735. DOI: 10.1007/s00737-019-00972-6.
Zondervan, Krina T.; Becker, Christian M.; Koga, Kaori; Missmer, Stacey A.; Taylor, Robert N.; Viganò, Paola (2018): Endometriosis. In: Nature reviews. Disease primers 4 (1), S. 9. DOI: 10.1038/s41572-018-0008-5.