Endometriosis

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Endometriosis is a major public health problem (Chapron et al., 2019). I could write a whole website on this and it still wouldn't be comprehensive enough to cover all of the issues that arise with endometriosis.

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According to Parasar et al. (2017), one out of every 10 people with a uterus has endometriosis, 10-15% of people people with a uterus are affected by their endometriosis at some point in their lives, and a total of 176 million people with a uterus in the world are negatively impacted by it daily (Shrikhande, 2020). The disease is characterized as an abnormal growth of uterine tissue that emerges outside of the uterus. As of 2022, it has been found on every single organ on the body including the bladder, bowel, stomach, lungs, heart and even the brain (Giudice & Kao, 2004; Samani et al., 2017). Often times, the disease appears as black lesions, but it also can show up in a diversity range of appearances, such as blebs (red, white, and yellow) and thick, dense adhesions.

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Endometriosis is believed to be caused by many factors, including retrograde menstruation, also known as backwards bleeding, genetics, and hormonal abnormalities that can cause the additional growth of lesions (Shrikhande, 2020; Sampson, 1927). There are many other theories such as immune dysfunction, inflammation, and metasplasia (Sourial et al., 2014). Overall, more work is needed to improve the quality of life for people who suffer from this condition as it has psychological and physical implications that can worsen over time (Yang et al., 2021)

 

 The bottom line is that we still do not know enough about the disease to fully prevent it. Recent research has suggested there to be an association between Ehlers-Danlos syndrome, neuroproliferative vestibulodynia, endometriosis, and mast cells (Mwaura et al., 2023; Glayzer et al., 2021). Eliminating caffeine, red meat, or processed food will not prevent the disease from coming back nor does a hysterectomy (Kechagias et al,. 2021;Rizk et al., 2014). In 2014, endometriosis recurred in about 62% with those who kept their ovaries (Rizk et al., 2014). Caffeine is not associated with increased risk of endometriosis (Kechagias et al., 2021). Indeed, there is no cure yet for endometriosis and the lack of funding researchers receive are minimal.  

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Current Clinical Trials on Endometriosis - Clinical Trials. Gov

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What are the common symptoms?

The symptoms that emerge with endometriosis include dysmenorrhea, menorrhagia, bloating, diarrhea, rectal pain, gastrointestinal pain, painful bowel movements, painful sex, tenderness upon examination, and urinary pain (Parasar et al., 2017). Additionally, major psychological outcomes occur including anxiety, fatigue, depression,  reduced self-esteem and overall quality of life (Facchin et al., 2017; Culley et al., 2013). Chronic pelvic pain commonly occurs during the entire duration of one's cycle, but some endometriosis cases are known to not be associated with dysmenorrhea at all.

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Stages of Endometriosis

Endometriosis is commonly characterized by stages, one through four. Stages do not correlate with pain. You can have stage one endometriosis and have debilitating pain, and stage four endometriosis with very minimal symptoms (Warzecha et al., 2020).

• Stage One: Minimal endometriosis, few implants

• Stage Two: Mild endometriosis, with deeper implants

• Stage Three: Presence of filmy adhesions, small cysts, deep implants

• Stage Four: Severe endometriosis, many implants, several cysts, adhesions

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Categories of Endometriosis

Peritoneal / Superficial Endometriosis: This type is is the most common and accounts for 80% of all cases (Whitaker et al., 2021; Reis et al., 2020). Most likely, the endometriosis you hear about on a day to day basis is superficial endometriosis. However, it can co-exist with other types of endometriosis. It does not invade deeply into the issues and stays on the pelvis and abdomen (peritoneum) (Whitaker et al., 2021). 

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Ovarian Endometriosis: Consists of chocolate cysts and endometriomas.

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Deep Infiltrating Endometriosis 1 or 2 (DIE): DIE is a very invasive type of endometriosis that occurs more than 5 milimeters into the peritoneal tissues and is often associated with pain (Wang et al., 2009). It is commonly classified as any type of endometriosis that is deeply located in the bowel, bladder, and ureters. Sometimes it occurs with chocolate cysts (benign cysts filled with fluid). Stage 2 DIE consists of endometriosis that has gone beyond the pelvis and sometimes infiltrates the heart, lungs, and more.

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Thoracic Endometriosis

Thoracic endometriosis is a rare condition where the presence of endometrial tissue develops around the lung. Most often, it is misdiagnosed or missed. The treatments that exist include hormone therapy and surgery. Symptoms that occur with thoracic endometriosis includes chest pain, coughing, and shortness of breath (Pinto, 2014). There are only a handful of providers that are skilled enough to deal with this type of endometriosis so choose effectively and do your research. 

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Diagnostic Tests

The gold-standard test for getting an accurate diagnosis for endometriosis is by a laparoscopy performed by a skilled surgeon, but it is the most invasive. Most likely, your doctor will take several conservative measures before resorting to surgery. During the surgery they will find it and then remove it.

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A pelvic exam is the first line screening for endometriosis, but most surgeons know that you cannot see the disease this way. By palpating several of the areas internally, the surgeon is able to feel around for it. However, sometimes there are other tests that can help find endometriosis before resorting to surgery (Chapron et al., 2019). Despite how prevalent this disease is, there no biomarkers to rule out the disease and many therapies are still undergoing clinical trials. Serum CA-125 been under investigation, but has not been standardized enough to be characterized as a genetic marker (Karimi-Zarchi et al., 2016).

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Here are the three imaging tests that doctors prescribe before resorting to surgery:

• Transvaginal ultrasound

• Abdominal ultrasound - less accurate

• Pelvis MRI with contrast - Please make sure your MRI is with contrast!

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Conservative Treatments

Always Consult Your Health Care Provider

• Birth control pills - Sometimes surgeons recommend patients skip the sugar pills/placebo pills (continuous pills) to not get a period

  • Estrogen and testosterone combination pills are known to cause hormonally-mediated vestibulodynia, opt for the progestin pills

• Hormone therapy

• IUD, contraceptive implant, contraceptive injection

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How can these affect your pelvic floor and sexual dysfunction?

Many patients with endometriosis complain of experience chronic pelvic pain and dysmenorrhea during their cycle and "painful sex." Most likely, the pain is not just in the pelvis, but can also be present in the lower back, thighs, groin, pubic area, genitalia, and hips. Sometimes, the pain can be so severe that the pain can cause neuropathy and nerve pain including sciatica and pudendal neuralgia.

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70% of patients experience deep dyspareunia, but two thirds are not limited to deep sexual pain (Yang et al., 2021). One's quality of life is substantially diminished with the inability to engage in sexual activity. As most of the endometriosis lesions are located in the posterior of the pelvic cavity (vaginal fornix, uterosacral ligament, and uterine rectal depression) the lesions form hard nodules, which can cause pain during sexual intercourse (Yang et al., 2021).

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Most often, pelvic floor physical therapy is a recommended treatment before and post-surgery. It is not a cure, but it can help. It's important to manually work the scar tissue, desensitize the nerves from firing off and also relax the pelvic floor.

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Excision vs. Ablation

Excision is reported to bring substantial relief in quality of life, sexual activity, and pain but it can often take several months to a year to see any improvement (Abbott et al., 2005) This surgical technique involves skilled removal of the lesions and is deemed as the gold-standard. Approximately 20% of people are reported not to have relief from excision. As endometriosis can appear on many organs, a skilled excision specialist is needed to effectively remove the disease, especially from other organs. Endometriosis recurrence rates after excision usually is around 57% after seven years post-op, whereas ablation, the burning of endometriosis lesions, results in 74% reccurrence after two years. Often times a acupuncturist or pelvic floor physical therapist is utilized for bladder and bowel issues, and general pain post-op.

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Resources

An intervention with a feasible culturally-competent lens requires better representation of lower income populations, marginalized and ethnic groups, and victims of trauma as well an option for each health care website to be viewed in different languages for a diverse range of families to view should be available. Many recent studies have significant gaps in relation to how endometriosis affects families as they only focus on the individual sufferer, and resources should be available for family members who live with and know of someone who has the disease (Culley et al., 2013).

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CURRENT CLINICAL TRIALS ON ENDOMETRIOSIS

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How to find a "good" doctor?

Training matters in this case. Do not go to your local OB/GYN! Make sure your surgeon has a Minimally Invasive Gynecological Surgery Certification and Fellowship. Go to the ICareBetter System to find an expert who can skillfully, remove your endometriosis and consider your whole history.

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• Positive results about each surgeon from patient testimonials must exist

• The surgeons must be trained in minimally invasive surgery, though some may be self-taught.

• Surgeons must be sensitive to dismissal, delayed diagnosis, and negligence.

• Excision is the primary method since ablation is known to be less successful with higher reccurrence rates

• A number of surgeons may work on other aspects in addition to endometriosis and adenomyosis, but some choose to focus on endometriosis and adenomyosis.

• Most surgeons use a variety of instruments including the DaVinci Robot, scissors, lasers, or others. The tools are deemed as a "personal preference.

• They must bring in a colorectal or general surgeon if you have endometriosis in the bowel, appendix region, stomach, and kidneys.

• Thoracic surgeons must be brought in/consulted for the diaphragm and the lungs

• Do not let your surgeon perform on you unless they are able to demonstrate they know what they are doing.

• Make sure you trust them and are able to have a good discussion with them

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References

Abbott, J., Hawe, J., Hunter, D., Holmes, M., Finn, P., Garry, R., & Sowter, M. C. (2005). Laparoscopic treatment of endometriosis improved pain and quality of life, but there was also a strong placebo effect. Evidence-Based Obstetrics and Gynecology, 7(3), 139-140. https://doi.org/10.1016/j.ebobgyn.2005.06.009

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As-Sanie et al. (2019). Assessing research gaps and unmet needs in endometriosis. Am J Obstet Gynecol, 221(2), 86-94.

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Chapron, C., Marcellin, L., Borghese, B., & Santulli, P. (2019). Rethinking mechanisms, diagnosis and management of endometriosis. Nature reviews. Endocrinology, 15(11), 666–682. https://doi.org/10.1038/s41574-019-0245-z

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Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., & Raine-Fenning, N. (2013). The social and psychological impact of endometriosis on women's lives: a critical narrative review. Human reproduction update, 19(6), 625–639. https://doi.org/10.1093/humupd/dmt027

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Facchin, F., Barbara, G., Dridi, D., Alberico, D., Buggio, L., Somigliana, E., Saita, E., &

Vercellini, P. (2017). Mental health in women with endometriosis: searching for predictors of psychological distress. Human reproduction (Oxford, England), 32(9), 1855–1861. https://doi.org/10.1093/humrep/dex249

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Giudice, L. C., & Kao, L. C. (2004). Endometriosis. Lancet (London, England), 364(9447), 1789–1799. https://doi.org/10.1016/S0140-6736(04)17403-5

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Glayzer, J. E., McFarlin, B. L., Castori, M., Suarez, M. L., Meinel, M. C., Kobak, W. H., Steffen, A. D., & Schlaeger, J. M. (2021). High rate of dyspareunia and probable vulvodynia in Ehlers-Danlos syndromes and hypermobility spectrum disorders: An online survey. American journal of medical genetics. Part C, Seminars in medical genetics, 187(4), 599–608. https://doi.org/10.1002/ajmg.c.31939

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Karimi-Zarchi, M., Dehshiri-Zadeh, N., Sekhavat, L., & Nosouhi, F. (2016). Correlation of CA-125 serum level and clinico-pathological characteristic of patients with endometriosis. International journal of reproductive biomedicine, 14(11), 713–718.

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Kechagias, K. S., Katsikas Triantafyllidis, K., Kyriakidou, M., Giannos, P., Kalliala, I., Veroniki, A. A., Paraskevaidi, M., & Kyrgiou, M. (2021). The Relation between Caffeine Consumption and Endometriosis: An Updated Systematic Review and Meta-Analysis. Nutrients, 13(10), 3457. https://doi.org/10.3390/nu13103457

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Parasar, P., Ozcan, P., & Terry, K. L. (2017). Endometriosis: Epidemiology, diagnosis and clinical management. Current obstetrics and gynecology reports, 6(1), 34–41. https://doi.org/10.1007/s13669-017-0187-1

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Mwaura, A. N., Marshall, N., Anglesio, M. S., & Yong, P. J. (2023). Neuroproliferative dyspareunia in endometriosis and vestibulodynia. Sexual medicine reviews, qead033. Advance online publication. https://doi.org/10.1093/sxmrev/qead033

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Azizad-Pinto, P., & Clarke, D. (2014). Thoracic endometriosis syndrome: case report and review of the literature. The Permanente journal, 18(3), 61–65. https://doi.org/10.7812/TPP/13-154

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Reis, F. M., Santulli, P., Marcellin, L., Borghese, B., Lafay-Pillet, M. C., & Chapron, C. (2020). Superficial Peritoneal Endometriosis: Clinical Characteristics of 203 Confirmed Cases and 1292 Endometriosis-Free Controls. Reproductive sciences (Thousand Oaks, Calif.), 27(1), 309–315. https://doi.org/10.1007/s43032-019-00028-1

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Rizk, B., Fischer, A. S., Lotfy, H. A., Turki, R., Zahed, H. A., Malik, R., Holliday, C. P., Glass, A., Fishel, H., Soliman, M. Y., & Herrera, D. (2014). Recurrence of endometriosis after hysterectomy. Facts, views & vision in ObGyn, 6(4), 219–227.

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Samani, E. N., Mamillapalli, R., Li, F., Mutlu, L., Hufnagel, D., Krikun, G., & Taylor, H. S. (2017). Micrometastasis of endometriosis to distant organs in a murine model. Oncotarget, 10(23), 2282–2291. https://doi.org/10.18632/oncotarget.16889

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Shrikhande, Allyson. (2020). The consideration of endometriosis in women with persistent gastrointestinal symptoms and a novel neuromusculoskeletal treatment approach.

Scientific Archives, 1(3), 66-72. http://scientificarchives.com/journal/archives-of-gastroentorology-research.

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Sourial, S., Tempest, N., & Hapangama, D. K. (2014). Theories on the pathogenesis of endometriosis. International journal of reproductive medicine, 2014, 179515. https://doi.org/10.1155/2014/179515

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Warzecha, D., Szymusik, I., Wielgos, M., & Pietrzak, B. (2020). The Impact of Endometriosis on the Quality of Life and the Incidence of Depression-A Cohort Study. International Journal of Environmental Research and Public Health, 17(10), 3641. https://doi.org/10.3390/ijerph17103641

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Wang, G., Tokushige, N., Markham, R., & Fraser, I. S. (2009). Rich innervation of deep infiltrating endometriosis. Human reproduction (Oxford, England), 24(4), 827–834. https://doi.org/10.1093/humrep/den464

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Whitaker, L., Doust, A., Stephen, J., Norrie, J., Cooper, K., Daniels, J., Hummelshoj, L., Cox, E., Beatty, L., Chien, P., Madhra, M., Vincent, K., & Horne, A. W. (2021). Laparoscopic treatment of isolated superficial peritoneal endometriosis for managing chronic pelvic pain in women: study protocol for a randomised controlled feasibility trial (ESPriT1). Pilot and feasibility studies, 7(1), 19. https://doi.org/10.1186/s40814-020-00740-9

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Yang, X., Xu, X., Lin, L., Xu, K., Xu, M., Ye, J., & Shen, X. (2021). Sexual function in patients with endometriosis: a prospective case-control study in China. The Journal of international medical research, 49(4), 3000605211004388. https://doi.org/10.1177/03000605211004388