Category Archives: Endometriosis Education

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The effect of invalidation

We are grateful to have the author of the below study write this piece for us:

The effect of personalized invalidation of symptoms by healthcare providers on patient depression: The mediating role of self-esteem

Allyson C. Bontempo, MA, Ph.D. Candidate in Health Communication, Rutgers University

“It’s all in your head.” “It’s psychosomatic.” “It’s anxiety.” “It’s depression.” “You’re overreacting.” “It’s normal.” “You just have really bad [insert specific bodily experience here].” Really, any use of the word ‘just’ or ‘only’ preceding clinicians’ verbal explanation that downplays the cause and/or severity of patients’ presumed-to-be “normal” symptom(s).

Many in the patient and health advocacy communities refer to this as ‘medical gaslighting.’ However, in the academic world—in which I wish work on this topic is read and ultimately accepted by clinicians—I refer to it more neutrally as ‘symptom invalidation.’ In essence, the patient’s perspective regarding the existence, cause, and/or severity of one or more of their symptoms is not acknowledged or deemed legitimate (i.e., is invalidated) by another. 

Regardless of what it may be called and by whom, symptom invalidation is all too familiar to too many individuals. It has likely been experienced by everyone at one point or another in their life, from clinicians and/or by family, friends, significant others, coworkers, or even strangers. Though, the implications are greater when it occurs from clinicians, as they are the ones responsible for patients’ care.

It appears to be more prominent among illnesses that are diagnoses of exclusion—in other words, illnesses for which there is no precise or relatively certain means of diagnosis. Common examples include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS; e.g., Anderson et al., 2012), fibromyalgia (e.g., Sim & Madden, 2008), dysautonomia (e.g., Stiles et al., 2018), long haul COVID (e.g., Roth & Mariacarla, 2021), and, perhaps most evidently, undiagnosed illness (e.g., Nettleton, 2006).

But what about endometriosis? Endometriosis is not a diagnosis of exclusion and can more or less be ‘definitively’ diagnosed. Although no diagnosis is ever 100% certain (National Academies of Sciences, Engineering, and Medicine, 2015), it is a diagnosis that arguably can be decided on with greater certainty than many other illnesses. Furthermore, it is a disease that is roughly as common as diabetes (Centers for Disease Control and Prevention, 2021) and that falls within a specialty that, unlike most other specialties, has annual well visits built into its system (Bontempo & Mikesell, 2020). This, then, begs the question: How can the high prevalence of invalidation among individuals with endometriosis be adequately explained and justified given these unique factors that should, in theory, make misdiagnosis and invalidation less likely to occur?

Over the past five years, since I began my work on endometriosis, I have noticed that qualitative study after qualitative study has either investigated symptom invalidation or symptom invalidation has surfaced in the results of larger research investigations (for example, studies investigating the patient experience more broadly, studies investigating the healthcare experiences or needs of patients, studies investigating the diagnostic journey of patients). This work has become so expansive over the years (see Pettersson & Berterö, 2020) that I fear we’ve reached a point at which we are no longer moving the study of symptom invalidation forward in a meaningful way. Although it is important to report on the patient experience and have those stories told and heard, it is now necessary to move beyond this work so that we are no longer continuing to only report on the problem and are instead (or also) reporting on attempts at change.

Thinking about the science of behavior change, we must consider our target audience – who are those we wish to reach with this work if our goal is to effect change? Presumably those who can effect this given change. Is it clinicians? Healthcare organizations? Medical education? Policymakers? All of the above?

Regardless of the level at which our target audience is situated—whether at the interpersonal level (e.g., individual clinicians) or at the state or federal level (e.g., policymakers)—in order for others who are not impacted by endometriosis nor members of endometriosis advocacy organizations to more deeply appreciate the importance and impact of symptom invalidation in the medical encounter for patients, we must ‘meet them where they are.’ And that, I believe, is through the use of evidence in the form of aggregated, statistical data that show that symptom invalidation is ‘statistically and significantly’ associated with negative health outcomes. We know that patient-centered communication (the opposite of symptom invalidation) improves care, well-being, healthcare spending, health disparities, and is simply the ‘right’ thing to do (Epstein et al., 2010). And this, here, may be our selling point – there is something to gain for all stakeholders involved. But we haven’t gotten to this point yet.

One of the most obvious and perhaps damaging effects symptom invalidation has on patients is that, especially when there are repeated negative medical encounters of this nature and over a long span of time, it makes them feel pretty awful about themselves, even to the point where they begin to no longer trust themselves (at least until the point of diagnosis, which seems to serve to finally validate their experiences and eliminate the belief or feeling that they are ‘crazy’; e.g., see Grogan et al., 2018). Not only are they suffering physically, but they are also needlessly suffering emotionally. For this reason, this became my starting point.

With the help of several endometriosis organizations and centers that posted the study advertisement to their open social media sites, I administered a one-time, anonymous, online survey for individuals with endometriosis. Survey topics included demographic and endometriosis-related information, experiences of being invalidated in medical encounters, and several self-report questionnaires capturing ratings of their medical encounters and current psychological and physical health. The variables that were analyzed that stemmed from the questionnaires were self-esteem (Rosenberg, 1965) and depression (Radloff, 1977). Furthermore, I constructed two questionnaires specifically for this study in an attempt to capture this idea of symptom invalidation after participants were asked to refer to a particular medical encounter prior to their diagnosis in which they perceived the clinician was dismissive of their symptoms (i.e., symptom invalidation) and/or of them, personally (i.e., personalized invalidation).

I analyzed the data after a sufficient number of individuals with endometriosis had taken the survey. First, I looked at symptom invalidation (e.g., “The clinician dismissed my symptoms”). Thus, I looked at whether or not patient ratings of increased symptom invalidation were significantly associated with patient ratings of 1) reduced self-esteem and 2) increased depression. In short, I explored the following questions: if patients report increased symptom invalidation from their clinician, is it significantly associated with reduced self-esteem as well as increased depression? The results were mixed: increased symptom invalidation was significantly associated with reduced self-esteem but not with increased depression.

Next, I looked at personalized invalidation (e.g., “The clinician dismissed me”). Thus, I looked at whether or not patient ratings of increased personalized invalidation were significantly associated with patient ratings of 1) reduced self-esteem and 2) increased depression. In short, I explored the following questions: if patients report increased personalized invalidation from their clinician, is that increased personalized invalidation significantly associated with reduced patient self-esteem as well as increased patient depression? In contrast to my examination of symptom invalidation above, the results for personalized invalidation, here, showed that increased personalized invalidation was associated with both self-esteem and depression. First, increased personalized invalidation was associated with decreased patient self-esteem and, second—in contrast to the results of symptom invalidation—increased personalized invalidation was also significantly associated with higher patient depression.  

Given the results presented in the previous paragraph, I lastly looked at whether or not a lowering of patient self-esteem is the mechanism through which increased personalized invalidation is associated with increased patient depression. In other words, I explored and tested the following question: does increased personalized invalidation from clinicians lead to lowered self-esteem ratings among patients, and does this lowered self-esteem, in turn, lead to increased depression ratings? Therefore, what I wanted to test was whether or not the lowering of patient self-esteem is a factor that may be responsible for the correlation between increased personalized invalidation and increased patient depression. The analysis I ran subsequently to test this more complex chain of associations indeed confirmed my hypothesis.

It is important to note that this study was observational (i.e., one ‘snapshot’ of the same group of patients for which different characteristics (or variables) and their associations are observed or assessed). This study was therefore not experimental (i.e., participants are assigned to one of at least two different groups on a random basis, with each group consisting of some different condition or manipulation). Therefore, we cannot make the claim that invalidating messages from clinicians causes depression by first lowering patients’ self-esteem. The significant, last analysis I conducted is helpful in supporting this claim but is not enough to actually make this claim. However, I want to emphasize that I am also not saying that invalidating messages from clinicians does not cause depression by first lowering patients’ self-esteem. This could very well be the case; however, the type of study I conducted (i.e., an observational, cross-sectional survey) was not designed to support this claim. An experimental study needs to be conducted to answer this question of whether or not one thing causes another (Kazdin, 2021).

The findings of this study are not actually ‘news,’ as it is all too commonly reported in the existing qualitative work and within health advocacy communities. However, these findings may be therapeutic to patients – they can validate patients’ experiences with these negative medical encounters and provide hope that work is indeed being conducted to bring this issue that largely lives within health advocacy communities to the academic sphere and those who really need to know this. Furthermore, these findings provide the first quantitative support via statistical data that symptom invalidation—particularly, personalized invalidation—can have a real, psychological impact on patients and therefore cannot (and should not) be ‘dismissed’ as benign. My hope is that a program of research can continue to be developed to shine light on the negative physical and psychological impact of symptom invalidation on patients and, ultimately, effect change.

References:

Anderson, V. R., Jason, L. A., Hlavaty, L. E., Porter, N., & Cudia, J. (2012). A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Education & Counseling, 86, 147-155. https://doi.org/10.1016/j.pec.2011.04.016

Centers for Disease Control and Prevention. (2020). National diabetes statistics report 2020: Estimates of diabetes and its burden in the United States. Retrieved December 4, 2020 from: https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statistics-report.pdf

Epstein, R. M., Fiscella, K., Lesser, C. S., & Stange, K. C. (2010). Why the nation needs a policy push on patient-centered health care. Health Affairs, 29, 1489-1495. https://doi.org/10.1377/hlthaff.2009.0888

Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: A thematic analysis of women’s written accounts of coping with endometriosis. Psychology & Health, 33, 1-15. https://doi.org/10.1080/08870446.2018.1496252

Kazdin, A. E. (2021). Research design in clinical psychology. Cambridge, UK: Cambridge University Press.

National Academies of Sciences, Engineering, and Medicine. (2015). Improving diagnosis in health care. Washington, DC: The National Academies Press.

Nettleton, S. (2006). ‘I just want permission to be ill’: Towards a sociology of medically unexplained symptoms. Social Science & Medicine, 62, 1167-1178. https://doi.org/10.1016/j.socscimed.2005.07.030

Pettersson, A., & Berterö, C. M. (2020). How women with endometriosis experience health care encounters. Women’s Health Reports, 1, 529-542. https://doi.org/10.1089/whr.2020.0099

Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. https://doi.org/10.1177/014662167700100306

Rosenberg, M. (1965). Society and the adolescent child. Princeton, NJ: Princeton University Press.

Roth, P. H., & Mariacarla, G. B. (2021). The contested meaning of “long COVID”–Patients, doctors, and the politics of subjective evidence. Social Science & Medicine, 114619.

Sim, J., & Madden, S. (2008). Illness experience in fibromyalgia syndrome: A meta-synthesis of qualitative studies. Social Science & Medicine, 67, 57-67. https://doi.org/10.1016/j.socscimed.2008.03.003

Sowislo, J. F., & Orth, U. (2013). Does low self-esteem predict depression and anxiety? A meta-analysis of longitudinal studies. Psychological Bulletin, 139, 213.

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Happy new year!

We hope that your new year brings you health and happiness. If you are still struggling to find a diagnosis, find treatment options, or want to find more resources, we hope our website can help you on your journey. Explore more at https://icarebetter.com/ and on our private Facebook group https://www.facebook.com/groups/418136991574617/ .  

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Understanding Endometriosis Pain: Types, Evaluation, and Treatment

Endometriosis is a chronic gynecological condition where tissue similar to the lining inside the uterus grows outside it, causing pain and potentially leading to fertility issues. The types of pain varies quite a bit because of different organ involvement, among other factors. 

Common Endometriosis Pain Symptoms

Here are some of the more common types of pain that endometriosis can manifest: 

  1. Dysmenorrhea: Severe menstrual cramps that can start before and extend beyond the menstrual period.
  2. Non-menstrual Pelvic & Abdominal Pain: Chronic pain in the lower abdomen and pelvis, unrelated to menstruation, most often related to intestinal bloating (endo-belly). 
  3. Dyspareunia: Pain during or after sexual intercourse.
  4. Dyschezia: Painful bowel movements.
  5. Dysuria: Painful urination, often exacerbated during menstruation.

There can be many other types of pain which vary depending on what organ might be involved. This makes the cause very difficult to diagnose correctly, and endo is often not the first condition that comes to mind. However, since it can cause many forms of pain, it must always be considered. More unusual examples include leg pain where the sciatic or femoral nerves may be involved or compressed, or pain with breathing due to diaphragmatic or even pleural (peritoneum within the chest cavity) and lung involvement. 

Evaluation of Endometriosis Pain

Evaluating endometriosis pain effectively is crucial for proper diagnosis and treatment planning. The Visual Analog Scale (VAS) and the Numerical Rating Scale (NRS) are recommended for their balance of strong and weak points compared to other scales (Bourdel et al., 2021). Additionally, the Endometriosis Pain Daily Diary (EPDD), a patient-reported outcome (PRO) instrument, has been developed to assess endometriosis-related pain and its impact on patients’ lives (van Nooten et al., 2018).  There are other outcomes assessment tools and it is important to use at least one of them so you can document whether is not something is actually helping or not. 

Pain Triggers in Endometriosis: Mechanisms and Treatments

So, how does endo actually cause pain?  It is due to a combination of overlapping nociceptive (nerve receptor activation), inflammatory, and neuropathic pain.  At the end of the day, pain is pain, but this opens up a number of different treatment options that can be used together to improve quality of life. Trying to address only one or two of these causes may not get you the best results.  

First, here are the most common triggers and treatment options. 

Peritoneal Prostaglandin Stimulation

Peritoneal prostaglandins are inflammatory mediators that play a significant role in the pain associated with endometriosis. They are produced by endometriosis lesions and contribute to inflammation and pain by sensitizing nerve endings in the pelvic region peritoneum.

Best Endometriosis Treatments:

  1. NSAIDs: Nonsteroidal anti-inflammatory drugs, such as ibuprofen and naproxen, are effective in reducing inflammation and prostaglandin production, thereby alleviating pain.  This does not actually treat the endometriosis. But knowing which type of NSAID is best for you is helpful for decisions.  
  2. Hormonal Therapies: Medications like oral contraceptives, progestins, and GnRH agonists or antagonists can help reduce the menstrual cycle and thus decrease prostaglandin production. Significant risk vs. benefit considerations exist and requires expert input to get to the best choices that optimize overall outcomes.  This approach, just like NSAID treatment, does not treat the endometriosis well due to relative progesterone resistance, among other factors. 
  3. Surgical Interventions:
    1. Laparoscopic and Robotic Surgery: Minimally invasive procedures provide two benefits.  First of all, a biopsy, which is most often obtained by surgery, is the only way to be certain that endometriosis is at least part of the reason for pain. Second, it has the potential for relatively immediate relief of pain because it removes the lesions which directly affect nociceptive stimulus and removes the chronic inflammation stimulus which affects the pelvic floor.  Surgery not only improves symptoms but is also a cornerstone therapy for endometriosis. 
    2. Hysterectomy: In severe cases, removing the uterus may be considered as a last resort to alleviate pain.  In some cases, for example, the uterus is essentially encased in endometriosis and fibrosis.  But otherwise, it is not necessary and is obviously inconsistent with child-bearing.  However, considerations related to possible coexisting adenomyosis may impact decisions about pain relief vs fertility.  

Pelvic Floor Stimulation

Pelvic floor dysfunction is a common issue in women with endometriosis, often resulting from chronic pain and muscle spasms. This can lead to additional pain and discomfort, especially during activities like intercourse, bowel movements, or urination.

Best Pelvic Pain Treatment

  1. Pelvic Floor Physical Therapy: Specialized physical therapy focusing on the pelvic floor can help reduce muscle spasms, improve muscle function, and alleviate pain.  This may include external and internal manipulation as well as transcutaneous electrical nerve stimulation (TENS). 
  2. Biofeedback Therapy: This technique uses electronic monitoring to help patients gain awareness and control over their pelvic floor muscles.
  3. Trigger Point Injections: In some cases, injections of anesthetics or steroids directly into the painful areas of the pelvic floor muscles can provide relief.

Central Nervous System Sensitization

Central nervous system (CNS) sensitization refers to the heightened sensitivity of the CNS to pain signals, often seen in chronic pain conditions, including endometriosis. This can result in exaggerated pain responses to stimuli that would not normally be painful.

Best Treatments:

  1. Cognitive-Behavioral Therapy (CBT): This psychological treatment helps patients manage pain by changing negative thought patterns and behaviors associated with chronic pain.
  2. Transcranial Direct Current Stimulation (tDCS): This non-invasive brain stimulation technique has been shown to decrease pain perception in patients with chronic pelvic pain and endometriosis (Mechsner et al., 2023).
  3. Pharmacological Treatments: Medications such as anticonvulsants (e.g., gabapentin, pregabalin) and antidepressants (e.g., amitriptyline) can help reduce neuropathic pain by modulating the pain pathways in the CNS.
  4. Interdisciplinary Approach: Combining various treatments, including medication, physical therapy, and psychological support, can be effective in managing chronic pain due to CNS sensitization (Allaire et al., 2017).

General Holistic and Integrative Approaches

  1. Dietary Changes:
    • Anti-inflammatory Diets: Foods rich in fruits, vegetables, lean proteins, and omega-3 fatty acids, can help reduce inflammation and pain. You should especially consider brassica veggies, leafy greens, berries, fatty fish like salmon, and nuts.
    • Avoiding Certain Foods: Reducing intake of processed foods, caffeine, alcohol, and high-fat meats may help alleviate symptoms.
  2. Acupuncture and Herbal Medicine:
    • Acupuncture: This Traditional Chinese medicine technique involves inserting thin needles into specific points on the body to relieve pain. Whether you believe it is related to meridians or nerve pathways, we know it is effective in many people. 
    • Herbal Treatments: Herbs like turmeric (curcumin), ginger, and chamomile have anti-inflammatory properties and can be used as supplements or in teas.
  3. Endocannabinoids: The “internal” endocannabinoid system (ECS) has emerged as a significant pharmacological target for managing endometriosis-related pain (Bouaziz et al., 2017).
  4. Cannabis: “External” use of CBD interfaces with the internal system because the target receptors are shared.  In addition, under expert guidance and where legal, THC may also help.  However, the latter has psychoactive effects which may not be desired.  
  5. Mind-Body Techniques:
    • Yoga: Incorporates physical postures, breathing exercises, and meditation to reduce stress and improve flexibility and pain management.
    • Meditation and Mindfulness: Techniques that focus on reducing stress and improving emotional well-being, can indirectly help manage chronic pain.
    • Cognitive-Behavioral Therapy (CBT): This specific psychological treatment helps patients manage pain by changing negative thought patterns and behaviors.
  6. Supplements and Natural Remedies:
    • Omega-3 Fatty Acids: Found in fish oil supplements, these can help reduce inflammation.
    • Vitamin D: Supplementing with vitamin D can improve immune function and potentially reduce endometriosis symptoms.
    • Magnesium: This mineral helps relax muscles and reduces cramping and pain.
  7. Lifestyle Modifications:
    • Regular Exercise: Moderate physical activity, such as walking, swimming, or yoga, can help reduce pain by releasing endorphins, the body’s natural painkillers.
    • Stress Management: Techniques like deep breathing, progressive muscle relaxation, and guided imagery can help manage stress, which can exacerbate pain.

Adenomyosis and Pain Mechanisms

Adenomyosis is a condition, highly related to endometriosis, in which the inner lining of the uterus (endometrium) breaks through or is transported into the muscle wall of the uterus (myometrium). This can cause significant pain and heavy menstrual bleeding. The mechanisms through which adenomyosis causes pain overlap with endo but have some additional separate issues. 

  1. Increased Nerve Fiber Density: Studies have shown that increased nerve fiber density in adenomyotic tissue is correlated with more severe pain. This suggests that the proliferation of nerve fibers within the uterine muscle layer is a significant factor in the pain experienced by patients with adenomyosis (Lertvikool et al., 2014).
  2. Inflammation and Prostaglandin Release: Adenomyosis leads to chronic inflammation within the uterine muscle, resulting in increased levels of inflammatory mediators like prostaglandins. These mediators cause painful uterine contractions and contribute to the severe pelvic pain associated with the condition (MacGregor et al., 2023).
  3. Myometrial Invasion: Adenomyotic lesions invade the myometrium through processes such as epithelial-mesenchymal transition, which can cause pain through abnormal uterine bleeding and severe pelvic discomfort (Tan et al., 2019).  There may also be transportation via lymphatics, but the end result is the same. 
  4. Abnormal Uterine Bleeding: The disruption of normal uterine architecture leads to abnormal bleeding patterns, which can exacerbate pain and contribute to dysmenorrhea (painful periods) (López et al., 2020).

Best Treatments for Adenomyosis-Associated Pain

To address the pain associated with adenomyosis, several treatment strategies can be employed:

  1. Hormonal Treatments:
    • Gonadotropin-Releasing Hormone (GnRH) Agonists and Antagonists: These drugs reduce estrogen levels, which can shrink adenomyotic lesions and reduce pain.
    • Progestins: Hormonal medications like Dienogest (DNG) can effectively manage pain by suppressing the growth of adenomyotic tissue, though they may be associated with side effects such as abnormal uterine bleeding (Kobayashi, 2023). There is some developing data that natural compounded progesterone works better than synthetic progestins. 
    • Levonorgestrel-Releasing Intrauterine System (LNG-IUS): This device releases a small amount of progestin directly into the uterus, reducing pain and bleeding by suppressing the endometrial tissue growth (Choi et al., 2010).
  2. Non-Hormonal Treatments:
    • NSAIDs: Nonsteroidal anti-inflammatory drugs can reduce pain by decreasing inflammation and prostaglandin production.
    • Acupuncture and Herbal Remedies: Traditional Chinese Medicine treatments such as acupuncture and herbal formulas like Shaoyao-Gancao Decoction (SGD) have shown promise in reducing pain by targeting inflammation and muscle relaxation (Guan et al., 2014).
  3. Surgical Interventions:
    • Laparoscopic and Robotic Surgery: Minimally invasive procedures can remove some adenomyotic tissue which may lead to some relief but may impact fertility if the uterine cavity is entered.  Also, since adenomyomas are now considered to be part of diffuse adenomyosis, removing all of it is highly problematic if not impossible.  
    • Hysterectomy: In severe cases, removing the uterus may be considered as a last resort to alleviate pain and improve the quality of life for patients who do not respond to other treatments.  Hysterectomy is not always required to effectively treat endometriosis pain.  However, if adenomyosis is also present, which is hard to accurately diagnose with imaging or examination, consideration should be given for a hysterectomy if childbearing is complete. 

Challenges and Future Directions

Communication with your doctor(s) about endometriosis pain can be challenging due to the subjective nature of pain and the complexity of the condition. Improved language and tools have been suggested to enhance patient-practitioner communication (Bullo & Weckesser, 2021). Additionally, ongoing research into genetic correlations and new treatment targets, such as the P2X3 receptor and brain-derived neurotrophic factor (BDNF), is crucial for developing more effective treatments (Ding et al., 2018).  The good news?  There is a lot of research going on regarding chronic pain and it’s not limited to endometriosis.  

Comprehensive Care for Endometriosis Pain: Resources and Next Steps

Endometriosis pain is a multifactorial issue requiring a comprehensive evaluation and a multifaceted treatment approach. Combining medical, surgical, and holistic treatments can provide the most effective relief and improve the quality of life. For further reading and detailed studies, please refer to the linked references in this article. 

What type of endo pain do you have? And how would you describe it? If you want to find an experienced endometriosis specialist or a different kind of endo provider near you, you can do so on our platform, iCareBetter. 

References and More Information: 

Updated Post: July 29, 2024

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Happy Holidays!

In the midst of several different holiday celebrations, people with endometriosis can often struggle to balance activities and symptoms. Grogan, Turley, and Cole (2018) interviewed people with endometriosis and they noted that: 

“Participants spoke about their lives being a constant struggle, where they tried to maintain their personal and working lives whilst dealing with long-term pain. Women had to ‘battle’ for an accurate diagnosis, and had limited faith in health professionals. Coping strategies included avoidance of social events to conserve energy (self-pacing), and avoiding taking painkillers to retain alertness. Women did not feel able to be honest with family and friends about their symptoms, and felt socially isolated and misunderstood.” The researchers noted that “so many women suffer in silence”.  

In the midst of busyness, take time to care for yourself and enjoy what matters to you most. 

Reference 

Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: a thematic analysis of women’s written accounts of coping with endometriosis. Psychology & health33(11), 1364-1378. Retireved from https://doi.org/10.1080/08870446.2018.1496252 

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How Do Endo Fertility Issues Impact the Mental Health of a Person?

Endometriosis (endo) can cause many issues. Endometriosis patients may have difficulty becoming pregnant or maintaining a full-term pregnancy. Up to 70% of women with endometriosis get pregnant without medical treatment. However, 30 to 50% of patients with endo experience fertility issues and may need endometriosis fertility treatments or surgery. Up to 50% of all women with infertility have endometriosis. According to the abstract in a study published in the International Journal of Women’s Health:

“The most common clinical signs of endometriosis are menstrual irregularities, chronic pelvic pain (CPP), dysmenorrhea, dyspareunia and infertility. Symptoms of endometriosis often affect psychological and social functioning of patients. For this reason, endometriosis is considered as a disabling condition that may significantly compromise social relationships, sexuality and mental health.”

Why Are Women Impacted Emotionally By Reproductive Disorders?

A plethora of reasons exists as to why women can experience deep emotional impact by a diagnosis of a reproductive disorder or a condition that could cause issues with fertility. Some women already worry about getting pregnant anyway, so an endometriosis diagnosis surely doesn’t help. Here’s a shortlist of some reasons reproductive issues can affect the emotional health of women with endometriosis:

  • Pressure to conceive right away
  • Worries about each stage of the pregnancy, from implantation to delivery
  • Pressured to have a child, even if the person is unsure or not ready
  • Possible medical interventions, such as IVF
  • Stress and emotional drainage that can result from endometriosis fertility treatments
  • Possible laparoscopy endometriosis surgery

Multiple studies demonstrate that a woman’s ability to conceive and bear a child plays a big part in her emotional health and self-esteem. While many women don’t want to have children, a large portion does. But, they might not be ready for a baby when they receive their endometriosis diagnosis. According to a study out of the Iranian Journal of Reproductive Medicine:

“While infertility is not a disease, it and its treatment can affect all aspects of people’s lives, which can cause various psychological-emotional disorders or consequences including turmoil, frustration, depression, anxiety, hopelessness, guilt, and feelings of worthlessness in life.”

Endometriosis Patients with Fertility Issues Need Emotional Support

Most endometriosis patients with fertility issues benefit by having a mental health provider as part of their multidisciplinary team.

Endometriosis impacts many facets of a person’s life. A recent study concluded that:

“Furthermore, there is an urgent need to develop and evaluate interventions for supporting women and partners living with this chronic and often debilitating condition.”

All Endometriosis Patients Could Benefit From Emotional Support

Many endometriosis patients with fertility issues express no desire to have children. Therefore, some women are unaffected by infertility that might arise from endo. However, it’s essential to keep these women in mind because their feelings matter, too. Perhaps some did not want to have kids now but were hoping to someday in the future? Or maybe they are just not with the right person to have children with them? 

Whatever the case may be, it’s significant that healthcare providers do not overlook a patient’s emotional needs, even if they say it doesn’t bother them if they cannot have kids. Perhaps a person in this situation may not need as intense emotional support, but they should see a mental health provider have a chance to talk about these feelings and think them through. Some interventions can help one conceive or be ready to conceive even with an endometriosis diagnosis. However, it’s significant to remember that the further the disease has progressed, the more complex it is to treat it to regain fertility. Therefore, when you are unsure if you want to have a baby, it’s still wise to have all the lesions removed as soon as you can and conduct proper follow-up.

Seeking a Mental Health Provider Experienced With Endometriosis

Endometriosis is a complex and often misunderstood disease. Therefore, women who battle this condition daily, especially those with fertility issues, require a mental health professional familiar with this inflammatory disorder. 

Endometriosis encompasses many domains of a patient’s life, and fertility issues are not the only things that impact women’s emotional health. When seeking out a professional, it’s critical to find someone familiar with the disease and its emotional impact on patients.

Importance of Friends and Family

In addition to adding a robust mental health provider to your team, it’s also essential that you seek support from your loved ones. Please encourage them to attend appointments with you to have a better understanding of the condition. When the people closest to you can comprehend the emotional roller-coaster accompanying infertility, they will be better prepared to support you emotionally. 

When a patient receives a diagnosis such as endometriosis, pain management, and other care items often become the priority. Therefore, it can be easy to overlook the emotional aspect of this condition, especially in someone with fertility issues. This is why it’s essential to do your research and find an experienced endometriosis expert to head up your team.

Do You Have Fertility Issues Caused By Endometriosis?

We want to hear from you. What are your thoughts on the emotional challenges? Do you have a solid mental health provider on your team? Leave your responses in the comments below.

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Endometriosis outside of the pelvis

Endometriosis is not confined to the pelvis. Endometriosis lesions have been found in multiple other areas in the body, including some strange places- like the nasal passage or the stomach wall (Mignemi et al., 2012; Mohamed et al., 2016). Andres et al. (2020) performed a systematic review of case studies of extrapelvic endometriosis and they found case reports of: 273 abdomen, 628 thoracic, 6 central nerve system, 12 extrapelvic muscle or nerve, and 1 nasal endometriosis. While this is not a comprehensive list of all the places endometriosis has been found, it does show that it can be found in many different places outside of the pelvis.

With abdominal endometriosis, if symptoms were noted, they “included a palpable mass (99%), cyclic pain (71%) and cyclic bleeding (48%)” (Andres et al., 2020). For thoracic endometriosis, symptoms included pain associated with menses, collapsed lung (pneumothorax), and blood in the sputum (hemoptysis) (Andres et al., 2020). The lesions in the thoracic cavity “favored the right side (80%)” (Andres et al., 2020). Symptoms can often be subtle and can be associated with other pathologies that may need to be ruled out as well.

For more information: 

References 

Andres, M. P., Arcoverde, F. V., Souza, C. C., Fernandes, L. F. C., Abrão, M. S., & Kho, R. M. (2020). Extrapelvic endometriosis: a systematic review. Journal of minimally invasive gynecology27(2), 373-389. Retrieved from  https://www.sciencedirect.com/science/article/pii/S1553465019312567  

Mignemi, G., Facchini, C., Raimondo, D., Montanari, G., Ferrini, G., & Seracchioli, R. (2012). A case report of nasal endometriosis in a patient affected by Behcet’s disease. Journal of minimally invasive gynecology19(4), 514-516. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465012001082  

Mohamed, A. A., Selim, Y. A., Arif, M. A., & Albroumi, S. A. (2016). Gastric wall endometriosis in a postmenopausal woman. The Egyptian Journal of Radiology and Nuclear Medicine47(4), 1783-1786. Retrieved from https://doi.org/10.1016/j.ejrnm.2016.08.005 

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Chronic fatigue syndrome and endometriosis

While no strong studies have been performed on endometriosis and chronic fatigue syndrome (also called myalgic encephalomyelitis)(CFS/ME), CFS/ME has been found with some frequency in those with endometriosis. This doesn’t mean that one causes the other. Rather it indicates that they can often be found present together, like we see with migraines and endometriosis. It is good to consider that there may be some overlapping symptoms and that more than one etiology may be present.  

Boneva et al. (2019) reports that: 

“Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME) or ME/CFS, is a serious chronic condition characterized by significant impairment in activity levels due to profound fatigue, worsening symptoms after seemingly minimal physical, or mental exertion, sleep problems, as well as difficulties with memory and concentration or orthostatic intolerance (1). Patients with ME/CFS also frequently experience chronic joint and muscle pain. Conditions with chronic pain as a major symptom, such as ME/CFS, endometriosis (EM), fibromyalgia, interstitial cystitis/bladder pain, irritable bowel syndrome, temporomandibular joint syndrome, and chronic migraines, have been termed chronic overlapping pain conditions. There is evidence that persons with one of these conditions are more likely to have another one as a co-morbidity…. We found more than a third of women with CFS reported endometriosis as a comorbid condition.”

(Boneva et al., 2019) 

This comorbidity, as well as other chronic pain conditions (interstitial cystitis, irritable bowel syndrome, chronic headaches, chronic low back pain, vulvodynia, fibromyalgia, temporomandibular joint disease, and chronic fatigue syndrome) has been noted in adolescents as well (Smorgick et al., 2013).  

References  

Boneva, R. S., Lin, J. M. S., Wieser, F., Nater, U. M., Ditzen, B., Taylor, R. N., & Unger, E. R. (2019). Endometriosis as a comorbid condition in chronic fatigue syndrome (CFS): secondary analysis of data from a CFS case-control study. Frontiers in pediatrics7, 195. Retrieved from https://doi.org/10.3389/fped.2019.00195  

Smorgick, N., Marsh, C. A., As-Sanie, S., Smith, Y. R., & Quint, E. H. (2013). Prevalence of pain syndromes, mood conditions, and asthma in adolescents and young women with endometriosis. Journal of pediatric and adolescent gynecology26(3), 171-175. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S1083318813000028  

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Endometriosis Fertility Treatment: Natural, Medical, & Surgical Options

Natural, Medical & Surgical Treatment of Endometriosis Infertility 

Endometriosis (endo) is a common condition that affects up to 10% of all women globally. But most people do not realize this condition’s impact on a significant proportion of women. Endometriosis and pregnancy complications are a common coincidence. Up to 50% of women with infertility have endo.

Endometriosis and pregnancy can be problematic for patients. And sometimes, endometriosis treatments are needed to conceive. Keep reading to learn more about fertility options for women with endo.

Read More: How Does Endometriosis Cause Infertility?

Lack of Evidence-Based Research Stalls Treatment Options

Endometriosis is sometimes like the elephant in the room that no one wants to discuss or do enough research. However, that needs to change because endometriosis is often a disabling condition, and people should know about it. Not only does this condition impact the patient’s quality of life, but it also affects the potential for some of these patients to have a family. This situation can affect a marriage, other family members, a partner, etc.

Options for treating women with endometriosis and pregnancy issues can be natural, medical, surgical, or surgery-assisted. Let’s review the latest fertility treatments and courses of action for women affected by endometriosis. First, we will briefly discuss how endometriosis and pregnancy are related. 

Can You Get Pregnant with Endometriosis?

Natural

Getting pregnant with endometriosis is not always easy, but it’s a reality for most patients who have the condition and want to conceive. It’s important to emphasize that the body can and still does get pregnant. There are things such as an endometriosis diet that might help. Let’s look at the good numbers. Up to 70%, according to some studies, of women with mild to moderate endometriosis will become pregnant without medical intervention.

Medically-Assisted

Statistics show that about 75% of women with severe endometriosis (stage III/IV) will conceive if they desire. Two-thirds of those pregnancies occurred naturally, and one-third with the help of the endometriosis fertility treatment.

If you have endometriosis and are having troubles getting or maintaining a pregnancy, and you wish to carry full-term, here are some medical options that may interest you:

  • Freeze some eggs: Your ovarian reserve of eggs can decline due to endometriosis. Therefore, some endo specialists recommend preserving your eggs in case you wish to conceive later. Just note that this can be an expensive option.
  • Superovulation and intrauterine insemination (SO-IUI): If you have normal fallopian tubes, mild endometriosis, and a partner with healthy sperm, this might be the best choice for you.
  • Fertility medications: Doctors can prescribe medications to produce up to two or three mature eggs. There are also progestin injections that are often used to help fertility issues. 
  • Frequent ultrasounds: If a person is trying to get pregnant, they may go in for frequent ultrasounds to identify when the eggs are most mature. At that time, a doctor can insert the partner’s collected sperm.
  • In-Vitro Fertilization (IVF): This treatment involves the extraction of the egg and sperm. The egg is fertilized outside the body and then implanted into the uterus.

Endometriosis Surgery For Infertility

Many women with endometriosis do become pregnant without medical assistance. However, studies suggest that endometriosis surgery does help a woman to become pregnant without difficulty. 

  • Removal of endometriosis tissue: Evidence shows that pregnancy rates improve if the endometriosis tissues are removed surgically.
  • Removal of tissue or large endometriosis cysts: Large cysts and tissue accumulation can contribute to infertility. Removing these can help the patient conceive.
  • Routine follow-up: Women with endometriosis often have cysts that relapse after treatment. It is crucial to complete follow-up visits and possibly have complementary surgeries down the road.

How Your Stage of Endometriosis Impacts Fertility

A diagnosis of endometriosis is a heavy thing to take in, primarily since it’s known to impact a woman’s reproductive organs. Studies have shown that the extent of endometriosis present during laparoscopy correlates with fertility.

Do You Have Concerns About Endometriosis and Fertility?

We want to hear from you. What is your biggest concern about the fertility impact of endometriosis? Or does it concern you at all? Leave your answers in the comments below. If you need medical attention that is not emergent, be sure to find a vetted endometriosis specialist who is familiar with the disease and modern treatments.

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Killer cramps

What’s behind those killer cramps in endometriosis? A mixture of nociceptive, inflammatory, and neuropathic factors that combine to create pain and other symptoms. Endometriosis is more than killer cramps. The factors associated with inflammation and nerves, such as prostaglandins, can cause other symptoms as well (Koike et al., 1992). For example, prostaglandins, such as seen in endometriosis, can also contribute to pain associated with irritable bowel syndrome (Grabauskas et al., 2020). Or chronic inflammation can cause a reduction in energy on the cellular level leading to fatigue (Lacourt et al., 2018). Morotti et al. (2014) notes that “endometriosis-associated pain is as complex as the disease itself” and that “no correlation exists between the extent of endometriosis seen at laparoscopy and the degree of pain symptoms.” There have been several studies demonstrating an increase in sensory nerve fibers in endometriotic lesions as well as inflammatory factors that contribute to pain (Morotti et al., 2014).  

Understanding and Finding Relief from Endometriosis Cramps

Find out more about pain and endometriosis here: https://icarebetter.com/what-influences-pain-levels/

References 

Grabauskas, G., Wu, X., Gao, J., Li, J. Y., Turgeon, D. K., & Owyang, C. (2020). Prostaglandin E2, produced by mast cells in colon tissues from patients with irritable bowel syndrome, contributes to visceral hypersensitivity in mice. Gastroenterology158(8), 2195-2207. Retrieved from  https://www.sciencedirect.com/science/article/pii/S0016508520302328 

Koike, H., Egawa, H., Ohtsuka, T., Yamaguchi, M., Ikenoue, T., & Mori, N. (1992). Correlation between dysmenorrheic severity and prostaglandin production in women with endometriosis. Prostaglandins, leukotrienes and essential fatty acids46(2), 133-137. Retrieved from https://doi.org/10.1016/0952-3278(92)90219-9  

Lacourt, T. E., Vichaya, E. G., Chiu, G. S., Dantzer, R., & Heijnen, C. J. (2018). The high costs of low-grade inflammation: persistent fatigue as a consequence of reduced cellular-energy availability and non-adaptive energy expenditure. Frontiers in behavioral neuroscience12, 78. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932180/#:~:text=We%20propose%20that%20chronic%20low,rapid%20generation%20of%20cellular%20energy

Morotti, M., Vincent, K., Brawn, J., Zondervan, K. T., & Becker, C. M. (2014). Peripheral changes in endometriosis-associated pain. Human reproduction update20(5), 717-736. Retrieved from https://academic.oup.com/humupd/article/20/5/717/2952641?login=true  

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Thankful for resources on endometriosis

It was Thanksgiving week in the USA- a time to take a moment to focus our attention on what we are grateful to have. While there is much to be learned about endometriosis and the best treatment, I am grateful for the researchers, healthcare providers, and advocates who are working to better the understanding and care of endometriosis. There are researchers out there trying to decipher the way endometriosis originates, functions, and affects people in order to lead to better treatment. There are healthcare professionals out there such as surgeons refining their skill in removing endometriosis as well as teaching others how to do so, therapists who help with the effects that endometriosis has on our bodies and minds, and advocates who are working to bring attention to this disease. There are too many to list them all but visit our Articles and Website links page as well as the links on Podcasts and Videos to see just a small sampling of those out there working to better endometriosis care.

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Social gatherings and food choices

As we approach a season of many different holidays, our thoughts often turn to food. There is usually food at most any holiday gathering- which can be both a pleasure and a grief for those dealing with a chronic illness. Those with a history of endometriosis can often have gastrointestinal symptoms that are exacerbated by certain foods or patterns of eating. Those with endometriosis may also have other conditions with specific dietary guidelines (such as interstitial cystitis or migraines).  

We have noted before that while there is no specific diet overall for endometriosis, nutrition can improve symptoms as well as overall health and well-being. Nutrition should be individualized to your specific needs. As we approach the holidays, you really have to know your body. For example, one person may tolerate gluten in small portions, while another cannot tolerate even an occasional cheat. Knowing your body and practicing mindful eating can lessen the stress and enable you to more fully enjoy gatherings. Because food is not only essential to our basic survival, it is often at the center of community gatherings and part of the pleasure of living.  

Some preplanning to accommodate dietary choices can minimize the interference of enjoying social gatherings. It may be bringing a dish that you know you can eat, having a small meal beforehand so you won’t be as tempted to indulge in things that don’t agree with you, or having an artful dodge if someone comments on what you are or are not eating (or better yet- as Toby Amidor put it- “don’t be afraid to politely say, ‘no, thank you’ without giving a long explanation…you don’t owe an explanation to anyone — so don’t feel obligated”). Sometimes dietary choices can feel like a punishment- a series of avoiding things. Focus on what you CAN have and enjoy. From time to time we have to Jedi mind trick ourselves by knowing that we can eat whatever we want, but we are choosing something better for ourselves (because you are worth it!). And if you throw caution to the wind and indulge, then don’t beat yourself up over it. Next time you eat, you’ll eat something better for yourself. If you are still in the process of finding what food choices work best for your body, then here are a few things to consider: 

Diet and Nutrition: https://icarebetter.com/diet-and/  

Is There an Endo Diet?: https://icarebetter.com/fast-facts-is-there-an-endo-diet/  

Curcumin: https://icarebetter.com/curcumins-effect-on-endometriosis/  

Mediterranean and FODMAP: https://icarebetter.com/endo-diet-mediterranean-or-fodmap-for-the-win/  

Celiac Disease and Endometriosis: https://icarebetter.com/celiac-disease-and-endometriosis/  

Interstitial cystitis: https://www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/

Reference

Amidor, T. (2018). How to Navigate a Holiday Party With Dietary Restrictions. Retrieved from https://www.foodnetwork.com/healthyeats/holidays/2018/12/how-to-navigate-a-holiday-party-with-dietary-restrictions

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Wait a minute- is that true?

We frequently get questions about information that is assumed to be true in most cases of endometriosis. When evaluating information about endometriosis, it is good to keep in mind that long accepted beliefs may not necessarily be absolute. Here are a few often touted beliefs about endometriosis and why they may not necessarily be accurate:

  1. “Hysterectomy is the definitive treatment for endometriosis.” Or variations of this theme: “Removing your uterus and/or ovaries will cure you”. Many people with endometriosis also experience problems with their uterus or ovaries (such as adenomyosis, fibroids, and other conditions that can contribute to chronic pelvic pain) that could benefit from a hysterectomy. However, using a hysterectomy to treat endometriosis alone may still leave you susceptible to continued symptoms and other problems from remaining lesions [one example: hydronephrosis from endometriosis left around ureters (Bawin, Troisfontaines, & Nisolle, 2013)].
  • “Persistent or recurrent endometriosis after a total abdominal hysterectomy and bilateral salpingo-oophorectomy (TAH BSO) has been reported by several investigators.” (Hasty & Murphy, 1995)
  • “According to literature, there are no randomized controlled trials for hysterectomy as the treatment for endometriosis.” (Bellelis, 2019)
  • “Endometriosis which is not removed at the time of hysterectomy and bilateral salpingo‐oophorectomy may represent after a variable time interval with many or all of the symptoms which prompted the original surgery. This tissue can be highly active and responsive to exogenous hormonal stimulation. In the presence of troublesome symptoms, excision of residual endometriosis may be effective and should be considered.” (Clayton et al., 1999)
  • “A high recurrence rate of 62% is reported in advanced stages of endometriosis in which the ovaries were conserved. Ovarian conservation carries a 6 fold risk of recurrent pain and 8 folds risk of reoperation. The decision has to be weighed taking into consideration the patient’s age and the impact of early menopause on her life style. The recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease. Surgical effort should always aim to eradicate the endometriotic lesions completely to keep the risk of recurrence as low as possible.” (Rizk et al., 2014)
  • “We found that among women undergoing hysterectomy, endometriosis was associated with a higher degree of prescription of analgesics. In the endometriosis group the prescription of analgesic, psychoactive and neuroactive drugs did not decrease significantly after surgery. In fact, the prescription of psychoactive and neuroactive drugs increased.” (Brunes et al., 2020)
  • “Studies have showed that the growth and progression of endometriosis continue even in ovariectomized animals.” (Khan et al., 2013)
  • Read more here: “Endometriosis persisting after hysterectomy and bilateral salpingo-oophorectomy: Removing the disease, not organs, is key to long-term relief”: http://endopaedia.info/treatment21.html
  1. “All of your endo will die off in menopause.” Whether natural, surgically induced, or medically induced, there are cases of endometriosis continuing after menopause. Endometriosis lesions are capable of producing their own estrogen (Huhtinen, Ståhle, Perheentupa, & Poutanen, 2012). Another spin off is that “you are too old to have endometriosis”. Inceboz (2015) reports cases of endometriosis in the 8th and 9th decade of life. While some people’s symptoms do improve, it is not a sure thing.
  • “As an estrogen-dependent disease, endometriosis was thought to become less active or regress with the onset of the menopause. However, based on some new data, we are discovering that this pathology can emerge or reappear at this period of life.” (Marie-Scemama, Even, De La Joliniere, & Ayoubi, 2019)
  • “Endometriotic lesions remained biologically active, with proliferative activity and preserved hormonal responsiveness, even in the lower estrogenic environment in the postmenopause.” (Inceboz, 2015)
  • “True prevalence of postmenopausal endometriosis is unknown. There have been some reports in the literature on the prevalence of endometriosis in postmenopausal women [5–8]. According to these studies, the prevalence of postmenopausal endometriosis is 2–5%…. Interestingly, nine of the cases were at the upper extreme of the age groups (eight were in 80–85 years and a case in 90–95 years).” (Inceboz, 2015)
  • “Occurrence or progression of postmenopausal endometriosis lesions could be related to extra-ovarian production of estrogen by endometriosis lesions and adipose tissue, which becomes the major estrogen-producing tissue after menopause. Postmenopausal women with symptomatic endometriosis should be managed surgically…” (Streuli, Gaitzsch, Wenger, & Petignat, 2017)
  1. “Getting pregnant will help.” However, endometriosis can cause infertility…..
  • “Although gynaecologists often advise women that pregnancy has a beneficial effect on endometriosis, few studies confirm this association. Owing to the paucity and limited quality of the data, we can conclude that the behaviour of endometriotic lesions during pregnancy seems to be variable, ranging from complete disappearance to increased growth. Despite some of the early authors questioning a positive effect (McArthur and Ulfelder, 1965; Schenken et al., 1987), the idea to recommend pregnancy as part of the treatment strategy for endometriosis persists to this day (Rubegni et al., 2003; Coccia et al., 2012; Benaglia et al., 2013). The few favourable early observations and very limited options to treat endometriosis seem to have generated the myth of a beneficial effect of pregnancy and initiation of the so-called ‘pseudopregnancy’ therapy. Endometriosis is associated with infertility, and a lower prevalence of endometriosis in pregnant than in non-pregnant women may have led clinicians and scientists to the view that pregnancy has a positive effect against the disease.” (Leeners, Damaso, Ochsenbein-Kölble, & Farquhar, 2018)
  1. “Mild endometriosis won’t affect fertility.” So-called “mild” or “minimal” endometriosis can affect the ability to conceive (Carvalho et al., 2012). Also, “mild” or “minimal” endometriosis can still produce significant symptoms (see Pain with Minimal Endometriosis).
  • “The purpose of this systematic review is to present studies regarding the association between pregnancy rates and the presence of early stages of endometriosis. Studies regarding infertility, minimal (stage I, American Society of Reproductive Medicine [ASRM]) and mild (stage II, ASRM) endometriosis were identified…Earlier stages of endometriosis play a critical role in infertility, and most likely negatively impact pregnancy outcomes.” (Carvalho, Below, Abrão, & Agarwal, 2012)
  1. “Hormonal suppressants will clean up the rest of the endometriosis.” Hormonal medications may be useful for other problems but cannot be relied upon to “clean up” or prevent recurrence of endometriosis. Surgeons who perform endometriosis surgery exclusively (excision) versus a general gynecological/obstetric practice have more chance to develop skill in being able to identify and being able to remove ALL endometriosis lesions (Khazali, 2020) (see Why Excision is Recommended).
  • “Endometriotic stromal cells resist the antiproliferative effect of GnRH agonists and antagonists.” (Taniguchi et al., 2013)
  • “This case demonstrates the obvious progression of deep rectal endometriosis despite 4 years of continuous hormonal therapy.” (Millochau et al., 2016)
  • “Few studies of medical therapies for endometriosis report outcomes that are relevant to patients, and many women gain only limited or intermittent benefit from treatment.” (Becker et al., 2017)
  • “There is currently no evidence to support any treatment being recommended to prevent the recurrence of endometriosis following conservative surgery.” (Sanghera et al., 2016)
  • “A systematic review found that post-surgical hormonal treatment of endometriosis compared with surgery alone has no benefit for the outcomes of pain or pregnancy rates, but a significant improvement in disease recurrence in terms of decrease in rAFS score (mean = −2.30; 95% CI = −4.02 to −0.58) (Yap et al., 2004). Overall, however, it found that there is insufficient evidence to conclude that hormonal suppression in association with surgery for endometriosis is associated with a significant benefit with regard to any of the outcomes identified….Moreover, even if post-operation medication proves to be effective in reducing recurrence risk, it is questionable that ‘all’ patients would require such medication in order to reduce the risk of recurrence.” (Guo, 2009)
  • “Many studies have investigated factors determining the recurrence of endometrioma and pain after surgery [16, 19, 20]…. Regardless of the mechanism, the present and previous studies suggest that postoperative medical treatment is known to delay but not completely prevent recurrence…. In our study, we also failed to observe a benefit for postoperative medication in preventing endometrioma and/or endometriosis-related pain recurrence.” (Li et al., 2019)
  • “Furthermore, all currently approved drugs are suppressive and not curative. For example, creating a hormonal balance in patients by taking oral contraceptives, such as progestins and gonadotropin‐releasing hormone agonists, may only relieve the associated inflammatory status and pain symptoms.” (Che et al., 2015)
  1. “If I respond to hormonal therapy then that means I have endometriosis.” Response to hormonal treatment, whether positive or negative, does NOT diagnose endometriosis or exclude it.
  • “Relief of chronic pelvic pain symptoms, or lack of response, with preoperative hormonal therapy is not an accurate predictor of presence or absence of histologically confirmed endometriosis at laparoscopy.” (Jenkins, Liu, & White, 2008)
  • “The definitive diagnosis of endometriosis can only be made by histopathology showing endometrial glands and stroma with varying degree of inflammation and fibrosis.” (Rafique & Decherney, 2017)
  1. “My scans didn’t show anything so I was told I didn’t have endometriosis.” Transvaginal ultrasounds and magnetic resonance imaging are becoming more sensitive in the hands of those with experience and can rule in instances of endometriosis (especially deep infiltrating endometriosis and endometriomas). However, it cannot rule out endometriosis. (See But All Your Tests Are Negative)
  • “Currently, there are no non‐invasive tests available in clinical practice to accurately diagnose endometriosis…. Laparoscopy remains the gold standard for the diagnosis of endometriosis and using any non‐invasive tests should only be undertaken in a research setting.” (Nisenblat et al., 2016)
  • “Ultrasonography and magnetic resonance imaging can be used to diagnose ovarian endometriotic cysts and deep infiltrating endometriosis; but their performance is poor in the diagnosis of initial stages of endometriosis.” (Ferrero, 2019)
  1. “None of my tests showed I had endometriosis.” Other tests, in addition to scans, cannot adequately rule out endometriosis with consistency or certainty.
  • “Currently, there are no non‐invasive tests available in clinical practice to accurately diagnose endometriosis…. Laparoscopy remains the gold standard for the diagnosis of endometriosis and using any non‐invasive tests should only be undertaken in a research setting.” (Nisenblat et al., 2016)
  • “CA‐125 and other serum markers (such as CA 19‐9, serum protein PP14, interleukins, and angiogenetic factors) have been measured in women with endometriosis but they are not reliable for the diagnosis of the disease.” (Ferrero, 2019)
  • “The majority of studies focused on a panel of biomarkers, rather than a single biomarker and were unable to identify a single biomolecule or a panel of biomarkers with sufficient specificity and sensitivity in endometriosis. Conclusion: Noninvasive biomarkers, proteomics, genomics, and miRNA microarray may aid the diagnosis, but further research on larger datasets along with a better understanding of the pathophysiologic mechanisms are needed.” (Anastasiu et al., 2020)
  1. “I was told it was IBS.”
  • “Endometriosis can be commonly misdiagnosed as IBS [22] due to overlap in common symptoms and perhaps mechanisms of disease progression involving aberrant activation of inflammatory cascades.” (Torres-Reverón, Rivera-Lopez, Flores, & Appleyard, 2018)
  1. “You are too young to have endometriosis.” Or “you are too young to have adenomyosis or DIE.” In those adolescents with chronic pelvic pain, endometriosis is a common discovery. Deep infiltrating endometriosis (DIE) can be found in teens.
  • “Endometriosis is a common finding in adolescents who have a history of chronic pelvic pain or dysmenorrhoea resistant to medical treatment, however the exact prevalence is unknown. Both early/superficial and advanced forms of endometriosis are found in adolescents, including ovarian endometriomas and deep endometriotic lesions. Whilst spontaneous resolution is possible, recent reports suggest that adolescent endometriosis can be a progressive condition, at least in a significant proportion of cases. It is also claimed that deep endometriosis has its roots in adolescence.” (Sarıdoğan, 2017)
  • “The majority of adolescent girls with chronic pelvic pain not responding to conventional medical therapy have endometriosis (up to 80%). Laparoscopy with biopsy is the only way to diagnose endometriosis in the adolescent population, and depends on recognition of atypical manifestations of the disease.” (Yeung Jr, Gupta, & Gieg, 2017)
  • “Adolescent endometriosis is not a rare condition.” (Audebert et al., 2015)
  • “An increasing body of literature suggests that advanced-stage endometriosis (revised scoring system of the American Society for Reproductive Medicine Stage III or IV) and deeply invasive endometriosis are relatively common in adolescents.” (Dowlut-McElroy & Strickland, 2017)
  • “In all, 648 of 1011 (64%) adolescents undergoing laparoscopy were found to have endometriosis. The prevalence ranged from 25% to 100%, with a mean prevalence of 64%. Thirteen studies including 381 participants categorized disease severity using the revised American Society of Reproductive Medicine classification. Among these, 53% of participants (201/381) had stage I, 28% (105/381) had stage II, 20% (76/381) had stage III, and 13% (49/381) had stage IV disease. Conclusions: The prevalence of endometriosis among adolescents with pelvic pain symptoms is high. Endometriosis is treatable, and prompt recognition will help to ensure that adolescents are signposted earlier to appropriate specialists. The management of adolescents with suspected endometriosis should be consistent with best practice guidance. Despite recommendations to increase the awareness and knowledge of endometriosis in adolescence, minimal research has followed.” (Hirsch et al., 2020)
  1. “My endo keeps coming back so there’s nothing I can do.” It can be difficult to ascertain if endometriosis truly reappeared or was all of it not removed previously (See Is There Microscopic or Occult Endometriosis). With repetitive surgeries or with endometriosis in certain locations (such as ureters, bowel, diaphragm, etc.), seeking someone who exclusively does surgery for endometriosis and its related conditions can be beneficial (Khazali, 2020). Often a team approach, utilizing other specialties as dictated by the individual’s case, is valuable (Khazali, 2020). (See Why Excision is Recommended) Recurrence can happen, more often in ovarian endometriosis, stage III and IV, and in those who were younger (Selçuk & Bozdağ, 2013). When looking at recurrence rates, it ranges from 6% to 67% (Selçuk & Bozdağ, 2013)! This wide range is due to many factors when evaluating studies- most studies do not differentiate the type of surgery, the type of surgeon (specialty center versus general gynecological practice), or the criteria for recurrence (was it reemergence of symptoms or repeat surgery) (Selçuk & Bozdağ, 2013). There are many related conditions that appear with endometriosis that can cause similar symptoms that should also be addressed (See Related Conditions).
  • “A multidisciplinary team approach (eg, gynecologic endoscopist, colorectal surgeon, urologist) can reduce risk and facilitate effective treatment.19 Likewise, advanced surgical skills and anatomical knowledge are required for deep resection and should be performed primarily in tertiary referral centers. Careful preoperative planning, informed consent, and meticulous adherence to “best practice” technique is requisite to reduce morbidity and ensure effective management of potential complications.90Although excisional biopsy and resection offers a higher success rate in treating the disease, surgical excision also requires a higher level of surgical skill. As a result, many patients receive incomplete treatment, which in turn may lead to persistent symptoms and recurrent disease. It should be noted that many women who have undergone repeated surgeries and had a hysterectomy still suffer.86 The need to improve surgical approach and/or engage in timely referrals is unquestionable. Surgery to debulk and excise endometriosis may be “more difficult than for cancer”. Complete removal of implants may be difficult due to variation in appearance and visibility. True surgical resection and treatment poses formidable challenges, even the hands of experienced clinicians. In particular, deep disease is often difficult to treat due to close proximity of and common infiltration in and around bowel, ureters, and uterine artery.18 Potential adenomyosis should also be included in the preoperative workup, as it can influence postoperative improvement patterns of pain and symptoms associated with endometriosis.” (Fishcer et al., 2013)
  • “All of the studies were conducted by expert laparoscopic surgeons, whose results are unlikely to be reproduced by the generalist surgeon…. Based on the studies performed to date, it is the author’s opinion that laparoscopic excision of endometriosis, when technically feasible, should be the standard of care. First, whereas visual diagnosis of endometriosis is correct in only 57% to 72% of cases, excisional surgery yields specimens for histologic confirmation—and identifies endometriosis in 25% of “atypical” pelvic lesions as well.18 The availability of such specimens would prevent unnecessary treatment and ensure more reproducible research findings. Excision should also reduce the incidence of persistent disease secondary to inadequate “tip of the iceberg” destruction, removing both invasive and microscopic endometriosis to provide the best possible symptom relief.” (Jenkins, 2009)
  • “Laparoscopic identification of superficial endometriosis implants represents a challenge for the gynecologic surgeon. Endometriosis lesions may present in a wide spectrum of appearance according to a “lifecycle” of the implants. The lesions can be flat or vesicular. They can have any combination of color typically red, back/brown and white. Active “red” lesions, large endometriomas, deep infiltrating nodules, and typical “powder-burn” lesions are easier to identify than “white” old fibrotic lesions. The endometriotic implants are hypervascular. The diagnostic accuracy at laparoscopy is also affected by the experience of the surgeon and the laparoscopic equipment [16].” (Jose, Fausto, & Antonio, 2018)
  1. “It’s all in your head.” When no visible cause is identified or usual treatments fail, the blame often gets shifted to the individual- that they are exaggerating or are not strong enough to deal with it or that they should be able to just live it. Sadly, one study (Rowe & Quinlivan, 2020) found that often a women’s fertility rather than quality of life was the driver for getting further care.
  • “Women’s symptoms are frequently trivialized or disbelieved, consequently attributing pathology to the woman rather than the disease, which is deeply distressing [11]. These responses are underpinned by essentialist notions that pain is just part of being a woman. Lack of legitimation results in victim blaming, reinforces gendered stereotypes about feminine weakness, intensifies women’s distress and averts prompt action [10]. Similar essentialist ideas underlie observations that framing endometriosis as a fertility problem is more likely to result in health care intervention than when it is framed as symptom management. In one qualitative study, women described fertility as the entry point for discussion about endometriosis, despite having sought health care for symptoms over many years [12].” (Rowe & Quinlivan, 2020)
  • “Endometriosis impairs the quality of life due to chronic and severe acyclic pelvic pain with associated dysmenorrhea, dyspareunia, gastrointestinal problems, fatigue and headaches….women with endometriosis are often surrounded by taboos, myths, scourge of subfertility, pain of disease and missed diagnosis and treatment [22]. Delays in the diagnosis and initiation of treatment for the disease in fact occur due to these counterproductive factors operative both at the individual patient level and at the medical level resulting in frustration and loss of valuable time in the prime phase of life of the patient….Delays also occur at the medical level due to the delay in referral from primary to secondary care, pain normalized by clinicians, intermittent hormonal suppression of symptoms, use of non-discriminating investigations and insufficiency in awareness and lack of constructive support among a subset of healthcare providers [23,24,25,37,38]. In this connection, it is noteworthy that delay in diagnosis is longer for women reporting with pelvic pain compared with those reporting with infertility, which is suggestive of the fact that there is a higher level of reluctance surrounding endometriosis-associated pain symptoms….” (Ghosh et al., 2020)
  • “Women had to ‘battle’ for an accurate diagnosis, and had limited faith in health professionals…. Conclusions: Implications for health professionals are discussed, including the need for earlier diagnosis and taking women’s symptoms more seriously at referral…” (Grogan, Turley, & Cole, 2018)
  • “Despite its high prevalence and cost, endometriosis remains underfunded and underresearched, greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment options. Due in part to the societal normalization of women’s pain and stigma around menstrual issues…” (As-Sanie et al., 2019)

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