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Category Archives: Endometriosis

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3 years ago Endometriosis , Endometriosis Education

Endocannabinoids and endometriosis

There has been an increase in research on endocannabinoids and their role in health. There are two main cannibinoid receptors that have been studied. CB1 receptors have been largely studied for their role in the central nervous system, while CB2 is more associated with immune function and has been investigated for its effect on inflammation (Ashton & Glass, 2007). However, one study notes that “CB1 receptors are highly expressed in the uterus” and that “CB2 receptors are preferentially expressed abundantly in the immune system and intestines and in other tissues such as the lungs, uterus, pancreas, and skin” (Bouaziz et al., 2017). The authors of that same study note that “the levels of expression of CB1 and CB2 are variable during the menstrual cycle” (Bouaziz et al., 2017). In addition, endocannabinoids have been found to have an effect on hormones- inhibiting luteinizing hormone and prolactin secretion (Oláh, Milloh, & Wenger, 2008).  

Relating specifically to endometriosis, one study noted that there may be an association between the endocannibinoid system (eCB) and endometriosis-associated pain (Andrieu et al., 2022). Andrieu et al. (2022) states that “endocannabinoid levels fluctuate in inflammatory conditions and as such may take part in endometriosis-associated pain.” McPartland et al. (2014) reports that “emerging literature documents the ‘eCB deficiency syndrome’ as an etiology in migraine, fibromyalgia, irritable bowel syndrome, psychological disorders, and other conditions.” Endometriosis might fit in that eCB deficiency category as another study notes that “some of the studies that we reviewed described endometriosis as an “endocannabinoid deficiency” condition, thereby partially explaining its implication with pain” and that “women with endometriosis have lower levels of CB1 receptors in endometrial tissue” (Bouaziz et al., 2017).  

Emerging evidence suggests that the eCB system is involved in inflammation and pain, and that this system may be altered in those with endometriosis. How can we help our eCB system? First, removing the endometriosis tissue that is contributing to inflammation. McPartland et al. (2014) notes that certain medications help upregulate the eCB system, including acetaminophen, non-steroidal anti-inflammatory drugs, opioids, glucocorticoids, antidepressants, antipsychotics, anxiolytics, and anticonvulsants. The authors do note certain caveats to this, such as “chronic opiate administration, however, may have a deleterious effect on the eCB system” and that “combining NSAIDs with cannabinoids (either eCBs or exogenous cannabinoids) produces additive or synergistic effects” (McPartland et al., 2014). The authors also note that some complementary and alternative medicine also upregulate the eCB system, such as: “massage and manipulation, acupuncture, dietary supplements, and herbal medicines” as well as “lifestyle modification (diet, weight control, exercise…)” along with stress reduction techniques like “meditation, yoga, and deep breathing exercises” (McPartland et al., 2014). The authors also found that “chronic stress impairs the eCB system” and that certain chemicals in the environment (such as pesticides and phthalates) can affect the eCB system (McPartland et al., 2014). 

References 

Andrieu, T., Chicca, A., Pellegata, D., Bersinger, N. A., Imboden, S., Nirgianakis, K., … & Mueller, M. D. (2022). Association of endocannabinoids with pain in endometriosis. Pain, 163(1), 193-203. Retrieved from https://pubmed.ncbi.nlm.nih.gov/34001768/  

Ashton, J. C., & Glass, M. (2007). The cannabinoid CB2 receptor as a target for inflammation-dependent neurodegeneration. Current neuropharmacology, 5(2), 73-80. doi: 10.2174/157015907780866884 

Bouaziz, J., Bar On, A., Seidman, D. S., & Soriano, D. (2017). The clinical significance of endocannabinoids in endometriosis pain management. Cannabis and cannabinoid research, 2(1), 72-80. Retrieved from https://www.liebertpub.com/doi/full/10.1089/can.2016.0035  

McPartland, J. M., Guy, G. W., & Di Marzo, V. (2014). Care and feeding of the endocannabinoid system: a systematic review of potential clinical interventions that upregulate the endocannabinoid system. PloS one, 9(3), e89566. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3951193/  

Oláh, M., Milloh, H., & Wenger, T. (2008). The role of endocannabinoids in the regulation of luteinizing hormone and prolactin release: Differences between the effects of AEA and 2AG. Molecular and cellular endocrinology, 286(1-2), S36-S40. Retrieved from https://pubmed.ncbi.nlm.nih.gov/18308464/ 

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3 years ago Endometriosis , Endometriosis Education , Menopause Endometriosis No comment

Endometriosis After Menopause: Everything You Need To Know

If you’ve been told that endometriosis goes away after menopause, this may not be the case. So, this may not be a great strategy if you’re trying to “wait out” endo through perimenopause and into menopause. 

It is reasonable to think that chronic conditions of your female reproductive organs, like endo, might also go away when you stop having periods. Here’s a look at how endo may or may not change after menopause, based on what we know about molecular biology and hormonal changes as you get older.

Table of contents

Does Menopause Cure Endometriosis?

Natural menopause does not occur overnight and it might take years before estrogen levels from the ovaries become negligible.  Active growth of endo may decrease at this point but, given other estrogen sources discussed in this article and internal molecular factors, it may not stop. So, trying to wait out endometriosis until menopause is final may give it another 5 years or more to grow and cause problems.  An active treatment strategy to address endo that persists into peri-menopausal years might limit the damage and lead to better results.    

Endometriosis Management After Menopause

After menopause, the management of endometriosis may become more difficult because by this point in life endo may have been present for decades, even if previously removed partially once or twice by surgery.  At this point symptoms may be due to endo as well as scarring and fibrosis, which is part of the body’s normal healing process. The associated problem is that fibrosis and scar does not respond to any medical therapy.  This, in turn, means that surgery is the main, if not the only, option for treatment after menopause in many cases. Of course, everyone is different and pelvic floor therapy and supportive care are also in the mix.   

Endometriosis After Menopause: The Molecular Biology

Endometriosis cells and tissue look very similar to the normal uterine endometrial lining.  Both are stimulated to grow and both try to shed monthly under cycling hormonal influence.  During a menstrual period,  endometrial tissue has the ability to shed and exit via the cervix and vagina.  Unfortunately, the similar-looking endometriosis tissue has no way to exit the body and gets trapped, causing inflammation, scarring, and pain.

Uterine endometrial tissue needs the hormone estrogen to grow, and usually, but not always, so does endometriosis. When you go through menopause naturally, your ovaries produce less estrogen. This causes symptoms such as hot flashes and night sweats. But the commonly held belief is that endometriosis may improve, or even go away, with the reduction in estrogen production by ovaries. We now understand why this does not happen in all women through molecular biology research.   

Endometriosis at a Molecular Level

While many factors control endo growth, including immunologic ones, exploring the molecular biology of hormones in menopause suggests that hormones can undoubtedly be a big part of the picture. In addition to the usual conversation about external estrogen from ovaries, which decreases towards menopause, intra-cellular production of estrogens also plays a critical role in the pathogenesis of endometriosis. This increases in peri and postmenopausal women who have persistent active endometriosis lesions.  

Without getting lost in the details of hormone enzyme activation and deactivation, which results from genetic switches getting turned on and off, suffice to say that research supports the following. There is local estrogen production in endometriosis cells, which activates other feedback loops at the cellular level. This activation of loops causes even more estrogen production and resistance to progesterone (the balancing hormone). This affects macrophages and pro-inflammatory cytokines (e.g., TNF-α and IL-1β), which sets off another chain reaction. These also create molecular signals (e.g., VEGF) that stimulate microscopic blood vessel formation to feed the endo cells and activate anti-apoptotic genes (e.g., Bcl-2), creating more endo growth. This leads to local tissue trauma, nerve stimulation, fibrosis, and pain. 

Endometriosis Symptoms After Menopause

endometriosis and menopause

What happens to your symptoms could depend on the severity of your symptoms before menopause and hormonal and inflammatory balance. If your endometriosis is mild, it may get better with menopause. If your disease is severe, symptoms are more apt to persist. Why? Several reasons: scarring and fibrosis that only gets worse and a molecularly more active endo type that persists and keeps growing after menopause. It is currently impossible to predict what type you may have and what molecular signals are in play in any given individual.   

If your symptoms don’t improve even after you’ve stopped having menstrual cycles, surgery may be the best option for you. Surgery to remove all of your endometriosis and fibrosis will often be more effective than medication. Years of growth and fibrosis can lead to more local nerve noxious stimulation, and the first step is to remove this. Medications, including natural enzyme supplements, will not dissolve scars, and any persistent active endo is also more difficult to control after menopause. Many other molecular signaling paths are operational, making it harder to determine the best target to block abnormal effects. All the various inter and intracellular signaling forms are under intense research. 

Estrogen Replacement After Menopause with Endo: Is It Safe?

All of the above concerns how, when, and where estrogen is produced. But how this affects cells in your body, including endometriosis cells, depends on the presence or absence of estrogen receptors. You can think of the estrogen molecules as little keys which float through your bloodstream and tissues (or locally produced on or near the endo cells), and the estrogen receptors are like little locks present in and on the cells. The two have to connect, or the key has to fit the lock to produce a molecular signaling event at the cellular level. One of these signaling events is whether or not to stimulate growth. 

There are different estrogen receptors called estrogen receptor alpha (ERα) and beta (ERβ). In some estrogen-sensitive tissues, like the breast or uterus, these two types can be variably pro-growth, and in others, they can be inhibitory. In addition, there is a progesterone receptor (PR) that binds progesterone in the same fashion via a lock and key mechanism. Endometriosis cells have overexpression of mainly ERβ and underexpression of PR. This imbalanced expression of receptors leads to progesterone resistance and amplification of the growth signal provided by estrogen. This only scratches the surface of incredible complexity, but hopefully, you get the idea. 

In general, to alleviate postmenopausal hot flashes, depending on whether you have a uterus or not after menopause, estrogen alone is often prescribed (no uterus) or combined with progesterone (the uterus is in). This is because progesterone balances the effect of estrogen on the uterus and reduces the risk of endometrial cancer due to estrogen-induced overgrowth of the endometrium.   

The exact ratio of alpha (ERα) and beta (ERβ) and the amount of PR present can be variable in endometriosis. It can change over time into menopause or after surgically induced menopause due to early removal of the ovaries. So, theoretically, any hormonal replacement will affect endo cells to some degree and may amplify the degree to which local estrogen is produced, as discussed above. The degree to which this happens and evolves is not predictable from person to person. 

Where does that leave us? It comes down to risk vs. benefit discussion because a reasonable amount of estrogen replacement after menopause can help the quality of life and bone health. Studies have not proven whether or not this can activate or amplify endometriosis growth after menopause. 

How About Compounded Natural or Bioidentical Hormones?

The long answer to this is very complex and depends highly on the quality of these hormones and whether or not the dosages are correctly mixed and, if one were to use combinations that are applied to the skin, degree of absorption, and much more. The problem with synthetic vs. natural arguments notwithstanding, the effect on the very variable and unpredictable receptor signaling described above remains theoretically unchanged. There is also a higher risk of inadvertently taking a higher dose since many are locally prepared and thus subject to less regulation. Get a highly qualified opinion and possibly several opinions and do a lot of due diligence personal research before going this route.  

How About Plant-Based Phytoestrogens?

Plant estrogens, otherwise known as phytoestrogens, uniquely attach to estrogen receptors. They can bind to either type of estrogen receptor but preferentially bind to ERβ. In doing so, they take up space and block the ability of regular estrogen to bind to the receptor. In terms of helping menopausal symptoms, estrogen receptors also exist on blood vessels, and the binding of phytoestrogens helps stabilize the blood vessels, reducing hot flashes. The effect is less than that caused by regular estrogen but is helpful in many women. At the same time, there can be a relative blockade at the endometriosis cell level. Again, given the differences regarding receptors and signaling effects between individuals, this is not 100% predictable but can be a win-win nonetheless.  

Along the natural, integrative line of thought, a couple of corollary strategies is how the estrobolome and seaweed figure into this puzzle. First, the estrobolome is part of your gut microbiome that can metabolize the excess estrogen in your body and eliminate it. This includes the excess estrogen produced by ovaries, local estrogen created at the cell level, and the toxin type of estrogens called xenoestrogens. Keeping your microbiome healthy and happy with probiotic supplements or fermented foods is the action time. Second, we know that seaweed can predictably reduce circulating estrogen. This can retard any hormonal influence on the regrowth of endo, especially if the bulk of any disease is removed surgically. 

Read more: Postmenopausal Malignant Transformation of Endometriosis

When is Surgery an Option for Peri and Post-Menopause Endometriosis?

If symptomatic endo is suspected as one gets closer to menopause, it merits discussion about expert removal of as much as possible via excision surgery. Ideally, a surgeon should remove all visible lesions in this case. Even if undetectable microscopic implants are left behind, removal of pain-producing scars/fibrosis and the bulk of any active endo limits the number of cells that might grow back over time, whether or not hormonal replacement is taken. 

There is one more reason for considering surgical removal. If you have a family history of cancer or have active endo as you enter menopause, given the known molecular abnormality overlap between endo and cancer (e.g., ARID1A), the risk of malignant degeneration may be higher. This is a highly individualized situation, but some can be critical to balancing the surgical risks vs. potential benefits.    

Surgical Concerns

So, with all of the above in mind, is there a reason NOT to have surgery to remove endo, especially if you have symptoms as you get close to or enter menopause? Of course! Even minimally invasive surgery is not risk-free, and the risks can increase as you get older. Scarring and fibrosis from advanced endometriosis possibly increased from prior surgeries, leading to complications and damage to organs, including the bowel. For this reason, selecting an über expert surgeon at that point in life is crucial.   

An über expert surgeon can handle pretty much any possible finding in the pelvis and abdomen. Moreover, they can address oncology risk concerns if you are at higher risk with a family history. This means that the right surgery for cancer would be performed if cancer were suspected or found during surgery. But short of cancer, this surgeon needs to be able to handle small bowel, rectal, bladder, ureteral involvement, even disease in the upper abdomen and diaphragm. Deep infiltrating endometriosis implants are more common if they have been allowed to grow over the years. This full-spectrum surgeon might be a gynecologic oncologist who has experience in endo excision. But even they may need a cardiothoracic surgeon if endo involves the chest cavity. Cardiothoracic surgery is an entirely separate specialty of surgery. Alternatively, a minimally invasive surgery team including an endo excision trained GYN surgeon, a urologist, a general surgeon, and possibly more would need to be available. It can be a logistic challenge to gather such a team, but this is usually possible in centers that specialize in endometriosis surgery.

All symptoms of endometriosis

Join endometriosis forum and discover endometriosis stories

Read on endometriosis forum: What are the long term side effects of lupron?

Get in touch with Dr. Steve Vasilev

More articles from Dr. Steve Vasilev:

Understanding the Connection between Endometriosis and Cancer

How to tell the difference between endometriosis and ovarian cancer

What would happen to the signs and symptoms of endometriosis after menopause?

The author of this article, Dr. Steven Vasilev MD is a fellowship-trained, triple board-certified integrative gynecologic oncologist specializing in complex pelvic robotic surgery. He focuses on advanced & reoparative endometriosis excision and molecular integrative healing, especially as it applies to women of older reproductive age and in menopause.

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3 years ago Endometriosis , Endometriosis Education

Gut microbiota and endometriosis

There is a lot of interest in research about the effect of the gut microbiota on our health. The gut microbiota is the collection of microorganisms that live in the human gastrointestinal tract. The “intestinal bacteria play a crucial role in maintaining immune and metabolic homeostasis and protecting against pathogens” and “altered gut bacterial composition (dysbiosis) has been associated with the pathogenesis of many inflammatory diseases and infections” (Thursby & Juge, 2017).

Xu et al. (2017) note that: 

“Gut microbiota can interact with the central nervous system through the gut–brain axis, thus affecting the host’s chronic stress level, such as anxiety and depression. Current researches show that patients with endometriosis often have a high level of chronic stress, which will in turn aggravate endometriosis by activating the β-adrenergic signaling pathway…. We found that in patients with endometriosis, the dysbiosis of gut microbiota was associated with their stress levels. Furthermore, the levels of Paraprevotella, Odoribacter, Veillonella, and Ruminococcus were significantly reduced in chronic stressed endometriosis patients, suggestive of a disease-specific change of gut microbiota at the genus level. Compared to the healthy women, the expression levels of inflammatory cytokines, nuclear factor-κB p65, and cyclooxygenase-2 increased in the chronic stressed endometriosis patients, indicating that the dysbiosis of gut microbiota may activate the inflammatory pathway of gut–brain axis.” 

Perrotta et al. (2020), while exploring the gut and vaginal microbiota of people with endometriosis, found that “vaginal microbiome may predict stage of disease when endometriosis is present”. That is pretty specific microbiota! It is not clear whether the inflammation from endometriosis causes changes to the gut microbiota and/or the gut microbiota increases inflammation associated with endometriosis (or both). However, Bolte et al. (2021) found that: 

“Higher intake of animal foods, processed foods, alcohol and sugar, corresponds to a microbial environment that is characteristic of inflammation, and is associated with higher levels of intestinal inflammatory markers…. Modulation of gut microbiota through diets enriched in vegetables, legumes, grains, nuts and fish and a higher intake of plant over animal foods, has a potential to prevent intestinal inflammatory processes at the core of many chronic diseases.”  

This suggests that a healthy diet may help improve the gut microbiota and potentially inflammation. It is not known whether this would have a significant impact on symptoms experienced.  

References 

Bolte, L. A., Vila, A. V., Imhann, F., Collij, V., Gacesa, R., Peters, V., … & Weersma, R. K. (2021). Long-term dietary patterns are associated with pro-inflammatory and anti-inflammatory features of the gut microbiome. Gut, 70(7), 1287-1298. Retrieved from   https://gut.bmj.com/content/70/7/1287  

Perrotta, A. R., Borrelli, G. M., Martins, C. O., Kallas, E. G., Sanabani, S. S., Griffith, L. G., … & Abrao, M. S. (2020). The vaginal microbiome as a tool to predict rASRM stage of disease in endometriosis: a pilot study. Reproductive Sciences, 27(4), 1064-1073. Retrieved from https://link.springer.com/article/10.1007/s43032-019-00113-5 

Thursby, E., & Juge, N. (2017). Introduction fo the human gut flora. Biochem J, 474(11), 1823-1836. doi: 10.1042/BCJ20160510 

Xu, J., Li, K., Zhang, L., Liu, Q. Y., Huang, Y. K., Kang, Y., & Xu, C. J. (2017). Dysbiosis of gut microbiota contributes to chronic stress in endometriosis patients via activating inflammatory pathway. Reproductive and Developmental Medicine, 1(4), 221. Retrieved from https://www.repdevmed.org/article.asp?issn=2096-2924;year=2017;volume=1;issue=4;spage=221;epage=227;aulast=Xu  

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3 years ago Endometriosis , Endometriosis Education

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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3 years ago Endometriosis , Endometriosis Education

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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3 years ago Endometriosis , Endometriosis Education No comment

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. 

Table of contents

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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3 years ago Endometriosis , Endometriosis Education

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 & health, 33(11), 1364-1378. Retireved from https://doi.org/10.1080/08870446.2018.1496252 

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3 years ago Endometriosis , Endometriosis Education , Endometriosis Fertility , Endometriosis Mental Health 2 comments

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

Table of contents

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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3 years ago Endometriosis , Endometriosis Education

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 gynecology, 27(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 gynecology, 19(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 Medicine, 47(4), 1783-1786. Retrieved from https://doi.org/10.1016/j.ejrnm.2016.08.005 

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3 years ago Endometriosis , Endometriosis Education

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 pediatrics, 7, 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 gynecology, 26(3), 171-175. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S1083318813000028  

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3 years ago Endometriosis , Endometriosis Education , Endometriosis Fertility 1 comment

Endometriosis Fertility Treatment: Natural, Medical, & Surgical Options

Table of contents

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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3 years ago Endometriosis , Endometriosis Education

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. Gastroenterology, 158(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 acids, 46(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 neuroscience, 12, 78. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932180/#:~:text=We%20propose%20that%20chronic%20low,rapid%20generation%20of%20cellular%20energy. 

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