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Writer's pictureNicola Stanisławska
7 min read

Endometriosis: One of the 20 Most Painful Medical Conditions

Imagine a pain so severe you find yourself helpless. Many doctors tell you that your period pain is normal. But it's not. On average, your diagnosis is delayed over 8 years. Once you do get diagnosed, with no existing cure, your options are prescribed pain medication, contraception, or surgery. This is the reality of endometriosis.


What is it?


Endometriosis is an estrogen-dependent, chronic, and incurable condition where endometrium-type tissue, similar to what lines the inside of the uterus, grows outside of it. Endometrial tissue is commonly found in the ovaries, fallopian tubes, or uterosacral ligaments (Tsamantioti et al., 2023). In rare cases, this tissue has even been identified outside the pelvic region, such as in the kidneys, lungs, diaphragm, or brain (Endometriosis Foundation of America). It can appear anywhere in the body. According to the WHO, it affects roughly 10% (190 million) of reproductive-age women and girls globally.



Symptoms


The endometrium-type tissue associated with endometriosis can grow and bleed in line with the menstrual cycle. Consequently, the surroundings of this tissue may become irritated, inflamed, and swollen. Moreover, scar tissue may form due to the breakdown and bleeding of this tissue each month. This bleeding, inflammation, and scarring cause the most characteristic symptoms of endometriosis (American College of Obstetricians and Gynecologists, 2021), which are intensifying sharp pains, excessive menstrual cramps, heavy and irregular menstrual flow, and painful ovulation. Symptoms also include:


  • Dyspareunia (painful intercourse)

  • Chronic pain in the area of the pelvic organs

  • Pain localized in the sacral region of the spine

  • Intestinal pain and painful defecation during menstruation

  • Pain in the urinary tract area and painful urination, especially during menstruation

  • Constipation or diarrhea

  • Chronic fatigue

  • Infertility, with some 40% of women with infertility also having endometriosis (American College of Obstetricians and Gynecologists, 2021)


Sikora et al., 2016 via Pokonać Endometriozę


Diagnosis


Unfortunately, diagnosis of endometriosis is a prolonged and challenging process for many women. A study conducted by Bontempo et al. in 2020 found the mean delay in diagnosis to be 8.6 years. It also found that 75.2% of patients reported being misdiagnosed with another physical health (95.1%) and/or mental health problem (49.5%), concluding that endometriosis continues to present serious and complex diagnostic challenges. In 2021, van der Zaden et al. aimed to identify the problems of endometriosis diagnosis from a patient's perspective. The study found that many women incorrectly believe that their symptoms are normal, consequently not seeking treatment. Many also feel that their symptoms are normalized and they are not taken seriously by medical practitioners, commonly due to a lack of knowledge regarding the condition. 


Currently, there is no blood test that can reliably indicate endometriosis. Although traditionally laparoscopy, a minimal invasion surgery, was traditionally used for diagnosis, new guidelines no longer recommend it as the main tool. Currently, imaging techniques, such as a transvaginal ultrasound or MRI, have been proposed as the new gold standard in endometriosis diagnosis (ESHRE, 2022).


As part of diagnosis, doctors establish the stage of endometriosis, from stage 1 to stage 4, depending on where endometrial tissue occurs in the body, how far it has spread, and how much tissue is in those areas (John Hopkins Medicine).


Treatment


With no cure for the condition, most treatments are aimed at helping to manage pain and slow down the growth of endometrial implants (Yale Medicine). 


For pain management, a group of painkillers known as non-steroidal anti-inflammatory drugs (NSAIDs) are often used, which includes ibuprofen, diclofenac, and acetylsalicylic acid (Aspirin) (Tsamantioti et al., 2023). 


A different approach is preventing ovulation and menstruation. For this reason, hormone-based drugs which suppress the production of hormones in women’s ovaries may be used, however, these are not suitable for women who would like to become pregnant. Hormone treatments used in endometriosis include progestins, the birth control pill (contraceptive pill), and GnRH analogues (agonists) (Tsamantioti et al., 2023).


For patients who have tried medications but continue to experience pain or other symptoms, surgery may be performed to remove tissue (Yale Medicine). Usually, a laparoscopy is performed. A less often used approach is laparotomy, usually used for more severe conditions, which is more invasive and involves a larger incision (Cleveland Clinic).


Causes: Newest research developments


Although the cause of endometriosis is yet to be established, ongoing research has explored several new avenues.


The gut microbiome has been investigated for its potential role in endometriosis progression. Chadchan et al., 2023 used a novel model using antibiotic-induced microbiota-depleted (MD) mice. The study found that these mice had smaller endometriotic lesions. When gut bacteria was transferred from mice with endometriosis into these mice, the lesion growth returned to normal. Additionally, the researchers identified specific metabolites (substances produced by gut bacteria) that were altered in mice with endometriosis. One of these, quinic acid, helped endometriotic cells survive and grow. This suggests that gut bacteria and their metabolites may promote endometriosis by changing immune responses. These findings could help develop new, non-invasive tests for endometriosis using stool samples.


A study has also demonstrated the relationship between endometriosis and women’s mental health. Koller et al., 2023 analyzed data from the UK Biobank, including over 8,200 patients with endometriosis and 194,000 healthy controls. The study found that individuals with endometriosis have a significantly higher likelihood of also having depression, anxiety, and eating disorders, even after accounting for factors like chronic pain, socioeconomic status, and medications. Moreover, to identify the genetic link between the two, researchers performed a genome-wide analysis of pleiotropic associations, when a single gene is linked with more than one phenotypic characteristic, shared between endometriosis and psychiatric disorders. The study identified 1 locus, DGKB rs12666606, as being shared between endometriosis and depression, which is notably expressed in both the brain and female reproductive tissue. 


The lack of research


In 1985, the Public Health Service Task Force on Women's Health Issues released a report advising that “the historical lack of research focus on women's health concerns has compromised the quality of health information available to women as well as the health care they receive.”(Public Health Service, 1985; Institute of Medicine (US) Committee on Women's Health Research, 2010). This issue is exemplified in endometriosis research. As discussed by Lang in a 2022 article published on Medical News Today, the disproportion in funding is visible through the comparison of funding for endometriosis research compared to diabetes research. In the U.S, endometriosis is diagnosed in approx. 1 in 10 women of reproductive age (endometriosis.org) and diabetes is diagnosed in approx. 10% of the U.S. population, both male and female (Center for Disease Control and Prevention; Lang for Medical News Today, 2022). Simultaneously, in 2020, the funding for endometriosis research in the U.S reached $26 million annually. In the same year, the National Institutes of Health (NIH) reported research spending on diabetes of $1,156 million. According to the article and a study conducted by Mirin et al. in 2021, “NIH applies a disproportionate share of its resources to diseases that affect primarily men, at the expense of those that affect primarily women.” 


Effect on students


The lack of endometriosis research and understanding of the condition amongst the public translates directly into academia. Although there is a significant lack of research in this area, Chaikof et al., 2024 aimed to examine how college students living with endometriosis manage the disease and their academics. The study found that independent of discipline or education level, endometriosis pain results in poor attendance, missed or late assignments, and an inability to focus on academic tasks inside and outside of the classroom. This results in high levels of stress, anxiety, and depression.


How to get help and diagnosis


If you suffer from the aforementioned symptoms, visit a doctor. It's crucial to not normalise severe pain in the pelvic region, especially that associated with menstruation. 


Although endometriosis can be an incredibly difficult condition to deal with, both physically and mentally, it is important to remember that you’re not alone. Many countries and regions have support groups and foundations aimed at spreading awareness on endometriosis and helping women get diagnosed and not feel alone.


In Poland, an example of such a foundation is Fundacja Pokonać Endometriozę (Defeat Endometriosis), whose mission is to help all those suffering from this disease and their loved ones through establishing support groups, offering resources regarding doctors and clinics available for diagnosis, providing information on symptoms and spreading awareness. Their website is: https://pokonacendometrioze.pl/eng/



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