Medication to Prevent Recurrence?

“Should I take medication to prevent recurrence of my endo?” There is no definitive answer to this question- it is an individual choice that should be discussed with your provider. However, evidence points to it not being needed if ALL endometriosis is removed with surgery. A few things to consider:

Is it truly a “recurrence” or just missed disease?

A significant factor to consider is if all endometriotic lesions were removed in the first place:

• “…findings all support that residual lesions seems to be the primary reason for the recurrence of the disease” (Selçuk & Bozdağ, 2013).  
• “Lack of complete surgical excision was another independent risk factor for recurrence of disease” (Ianieri, Mautone, & Ceccaroni, 2018).
• Deep infiltrating disease has a much lower recurrence rate with complete excision versus incomplete (3.9% versus 35.3%!) (Cao et al., 2015).
• “The experience of the surgeon is also a factor that implies the risk of recurrence” (Selçuk & Bozdağ, 2013).
• Interestingly, prior medical treatment before excision can increase the risk for recurrence (Koga et al., 2013).

Does it involve a type of endometriosis that has higher recurrence risk, such as ovarian, peritoneal, or deep infiltrating disease (stage 3 or 4)? Are you at a young age (under 21 years)?

• There is a higher recurrence risk with ovarian, peritoneal, or deep infiltrating disease (stage 3 or 4) (Selçuk & Bozdağ, 2013). Ovarian endometriomas have a recurrence rate of 11-32% (higher risk in younger patients and those with advanced disease) (Koga et al., 2013).
• Those at a younger age (under 21 years) have a higher recurrence rate (Tandoi et al., 2011).
• However, these factors depend again on the ability to remove the disease. The skill of the surgeon and having an interdisciplinary team can increase the odds of removing more advanced disease and decrease the risk of recurrence- this holds true even for younger patients (Fischer et al., 2013; Yeung et al., 2011). (See Why Excision)

Are there other conditions that can be causing continued symptoms that are similar to endometriosis symptoms (adenomyosis, interstitial cystitis, etc.)?

• Most of us with endometriosis have more than one condition that can mimic the symptoms of endometriosis. These conditions need their own specific treatment.  (See Related Conditions)

Remember, medications overall are “suppressive rather than curative” (Falcone & Flyckt, 2018). In addition, hormonal medication may not stop the progression of disease- this is particularly important where the ureters and/or bowel are involved (Barra et al., 2018; Ferrero et al., 2011; Millochau et al., 2016).

There are many studies and arguments for both sides. Here are a few:

Against it:

• “There is currently no evidence to support any treatment being recommended to prevent the recurrence of endometriosis following conservative surgery.” (Sanghera et al., 2016)
• “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)
• “Complete laparoscopic excision of endometriosis in teenagers–including areas of typical and atypical endometriosis–has the potential to eradicate disease. These results do not depend on postoperative hormonal suppression.” (Yeung et al., 2011)
• “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…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. It has been reported that about 9% of women with endometriosis simply do not respond to progestin treatment….Therefore, the use of post-operation medication indiscriminately may cause unnecessary side effects (and an increase in health care costs) in some patients who may intrinsically have a much lower risk than others and in others who may be simply resistant to the therapy. The identification of high-risk patients who may benefit the most from drug intervention would remain a challenge.” (Guo, 2009)
• “GnRHa administration is followed by a temporary improvement of pain in patients with incomplete surgical treatment. It seems that it has no role on post-surgical pain when the surgeon is able to completely excise DIE implants.” (Angioni et al., 2015)

For it:

• “Post-operative hormonal suppression following conservative endometriosis surgery decreases the odds of disease recurrence and results in greater reductions in pelvic pain/dysmenorrhea compared to expectant management.” (Zakhari et al., 2019)
• “Laparoscopic excision is considered as the ‘gold standard’ treatment of ovarian endometrioma. However, a frustrating aspect is that disease can recur….Regarding post-operative medical management for preventing recurrence, GnRH analogue and danazol have not been proved to be effective mainly because most trials used these drugs over short periods. In contrast, long term administration of OC is safe and tolerable and recommended for those who do not want to conceive immediately after the surgery.” (Koga et al., 2013)

References

Angioni, S., Pontis, A., Dessole, M., Surico, D., Nardone, C. D. C., & Melis, I. (2015). Pain control and quality of life after laparoscopic en-block resection of deep infiltrating endometriosis (DIE) vs. incomplete surgical treatment with or without GnRHa administration after surgery. Archives of gynecology and obstetrics, 291(2), 363-370.  Retrieved from https://link.springer.com/article/10.1007/s00404-014-3411-5

Barra, F., Scala, C., Biscaldi, E., Vellone, V. G., Ceccaroni, M., Terrone, C., & Ferrero, S. (2018). Ureteral endometriosis: a systematic review of epidemiology, pathogenesis, diagnosis, treatment, risk of malignant transformation and fertility. Human reproduction update, 24(6), 710-730. https://academic.oup.com/humupd/article/24/6/710/5085039?login=true

Cao, Q., Lu, F., Feng, W. W., Ding, J. X., & Hua, K. Q. (2015). Comparison of complete and incomplete excision of deep infiltrating endometriosis. International journal of clinical and experimental medicine, 8(11), 21497. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4723943/

Falcone, T., & Flyckt, R. (2018). Clinical management of endometriosis. Obstetrics & Gynecology, 131(3), 557-571. Retrieved from https://journals.lww.com/greenjournal/Abstract/2018/03000/Clinical_Management_of_Endometriosis.23.aspx?context=FeaturedArticles&collectionId=4

Ferrero, S., Camerini, G., Venturini, P. L., Biscaldi, E., & Remorgida, V. (2011). Progression of bowel endometriosis during treatment with the oral contraceptive pill. Gynecological Surgery, 8(3), 311-313. Retrieved from https://link.springer.com/article/10.1007/s10397-010-0610-3

Fischer, J., Giudice, L. C., Milad, M., Mosbrucker, C., & Sinervo, K. R. (2013). Diagnosis & management of endometriosis: pathophysiology to practice. APGO Educational Series on Women’s Health Issues. Retrieved from https://www.ed.ac.uk/files/atoms/files/diagnosis_and_management_of_endometriosis_booklet.pdf

Guo, S. W. (2009). Recurrence of endometriosis and its control. Human reproduction update, 15(4), 441-461. Retrieved from http://humupd.oxfordjournals.org/content/15/4/441.full 

Ianieri, M. M., Mautone, D., & Ceccaroni, M. (2018). Recurrence in deep infiltrating endometriosis: a systematic review of the literature. Journal of minimally invasive gynecology, 25(5), 786-793. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465018300372

Koga, K., Osuga, Y., Takemura, Y., Takamura, M., & Taketani, Y. (2013). Recurrence of endometrioma after laparoscopic excision and its prevention by medical management. Front Biosci (Elite Ed), 5, 676-683.  Retrieved from https://pdfs.semanticscholar.org/2da7/5702eac08b0a32fb31bd5478be9e5d43a8b7.pdf

Li, X. Y., Chao, X. P., Leng, J. H., Zhang, W., Zhang, J. J., Dai, Y., … & Wu, Y. S. (2019). Risk factors for postoperative recurrence of ovarian endometriosis: long-term follow-up of 358 women. Journal of Ovarian Research, 12(1), 79. Retrieved from https://ovarianresearch.biomedcentral.com/articles/10.1186/s13048-019-0552-y

Millochau, J. C., Abo, C., Darwish, B., Huet, E., Dietrich, G., & Roman, H. (2016). Continuous amenorrhea may be insufficient to stop the progression of colorectal endometriosis. Journal of minimally invasive gynecology, 23(5), 839-842. Retrieved from https://www.jmig.org/article/S1553-4650(16)30047-4/abstract?fbclid=IwAR2Q7o1kJtfNNgMd0Q4_5K0BDe9_DjH1QOUTxTLK2HpgiFVgws5NT9xVdwo

Sanghera, S., Barton, P., Bhattacharya, S., Horne, A. W., & Roberts, T. E. (2016). Pharmaceutical treatments to prevent recurrence of endometriosis following surgery: a model-based economic evaluation. BMJ open, 6(4), e010580. Retrieved from http://bmjopen.bmj.com/content/6/4/e010580.long 

Selçuk, İ., & Bozdağ, G. (2013). Recurrence of endometriosis; risk factors, mechanisms and biomarkers; review of the literature. Journal of the Turkish German Gynecological Association, 14(2), 98. Retrieved from https://journals.sagepub.com/doi/full/10.2217/whe.15.56

Tandoi, I., Somigliana, E., Riparini, J., Ronzoni, S., & Candiani, M. (2011). High rate of endometriosis recurrence in young women. Journal of pediatric and adolescent gynecology, 24(6), 376-379. Retrieved from https://doi.org/10.1016/j.jpag.2011.06.012

Yeung Jr, P., Sinervo, K., Winer, W., & Albee Jr, R. B. (2011). Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary?. Fertility and sterility, 95(6), 1909-1912.  Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/21420081 

Zakhari, A., Delpero, E., McKeown, S., Murji, A., & Bougie, O. (2019). Long Term Outcomes of Post-Operative Hormonal Suppression in Patients with Endometriosis: A Systematic Review and Meta-Analysis. Journal of Minimally Invasive Gynecology, 26(7), S90.  Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465019311641

4 years ago Endometriosis , Endometriosis Education

My experience with pelvic physical therapy

I had never heard of pelvic physical therapy when my doctor suggested it. I was both wary of what pelvic physical therapy would entail and how much it might help. Pain from endometriosis, especially pain that has gone on for years, can contribute to myofascial issues (Aredo et al., 2017; dos Bispo et al., 2016). Most people with endometriosis have other conditions that can contribute to chronic pelvic pain as well. Pelvic physical therapy can be a great part of a treatment plan for chronic pelvic pain (Weiss, Rich, & Swisher, 2012). It did help me tremendously- especially after I had my endometriosis lesions excised.

There is specialized training to do pelvic physical therapy. For instance, my pelvic PT held a certification in pelvic health physical therapy (CAPP) and knew that kegels weren’t a blanket treatment for pelvic conditions in women (see “Everyone should do kegels” and other pelvic floor myths).

When I went for my initial consultation with the pelvic physical therapist, she went through my history and did both an external and internal exam. She assessed what might be contributing to my problems. She used external electromyographic biofeedback where I could see the screen and see how tight my pelvic floor muscles were (off the chart so tight).

My PT then created a plan to address my specific issues to help restore balance to my body and retrain my pelvic floor muscles to release.  She utilized biofeedback, neuromuscular electrical stimulation, yoga therapy, myofascial release techniques, manual joint mobilization and therapeutic exercises. She also adapted my plan based on my feedback. Having a knowledgeable pelvic physical therapist is so important- because everyone is different and will need a unique treatment plan.

I did 3 months of physical therapy before surgery and then 3 more months after. I noted some improvement before surgery, but it wasn’t until after my surgery to remove my endometriosis that I really noticed a big difference. It did take that amount of time to heal after surgery and continue the physical therapy work in order to get to a point that I felt I was where I wanted to be. It wasn’t easy, but it was worth it.

If you are considering pelvic physical therapy, then check out our Treatment page and look under Physical Therapy.

Here are some good places to start to learn more about pelvic physical therapy and how it might help you:

• Preparing for Pelvic Floor Therapy
• Pelvic Floor Spasm: The missing link in chronic pelvic pain
• Recognition and Management of Nonrelaxing Pelvic Floor Dysfunction
• 10 Expert Physio Techniques that Relieve Pelvic Floor Muscle Tension and Pelvic Pain Fast
• Video: Endometriosis, Your Pelvic Floor, and You
• Video: Painful Sex and the Endo Pelvis

References

• Aredo, J. V., Heyrana, K. J., Karp, B. I., Shah, J. P., & Stratton, P. (2017, January). Relating chronic pelvic pain and endometriosis to signs of sensitization and myofascial pain and dysfunction. In Seminars in reproductive medicine (Vol. 35, No. 1, p. 88). NIH Public Access. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5585080/
• dos Bispo, A. P. S., Ploger, C., Loureiro, A. F., Sato, H., Kolpeman, A., Girão, M. J. B. C., & Schor, E. (2016). Assessment of pelvic floor muscles in women with deep endometriosis. Archives of gynecology and obstetrics, 294(3), 519-523. Retrieved from https://link.springer.com/article/10.1007/s00404-016-4025-x
• Weiss, P. M., Rich, J., & Swisher, E. (2012). Pelvic floor spasm: the missing link in chronic pelvic pain. Contemporary OB/GYN. Retrieved from dos Bispo, A. P. S., Ploger, C., Loureiro, A. F., Sato, H., Kolpeman, A., Girão, M. J. B. C., & Schor, E. (2016). Assessment of pelvic floor muscles in women with deep endometriosis. Archives of gynecology and obstetrics, 294(3), 519-523. Retrieved from https://link.springer.com/article/10.1007/s00404-016-4025-x

4 years ago Endometriosis , Endometriosis Education No comment

Fatigue with Endometriosis

Fatigue is a symptom of endometriosis and can be quite debilitating (Ramin-Wright et al., 2018). Taber’s Medical Dictionary (n.d.) defines fatigue as “an overwhelming sustained feeling of exhaustion and diminished capacity for physical and mental work.” Fatigue with an illness often does not improve with rest (Louati & Berenbaum, 2015).

Endometriosis is an inflammatory disorder, and this inflammation can lead to fatigue. Inflammatory molecules, such as prostaglandins, cytokines, etc., contribute to fatigue as well as problems with “sleep, cognition, anxiety, and depression” (Poon et al., 2015; Zielinski, Systrom, & Rose, 2019). Chronic low-grade inflammation can cause a reduction in energy on the cellular level (Lacourt et al., 2018). In a circular pattern, inflammation can lead to pain, sleep problems, stress, and depression….which can lead to more inflammation. In addition, hormones, “mainly estradiol,” can “promote the expression and release of pro-inflammatory factors” (García-Gómez et al., 2020). Endometriosis lesions have shown higher amounts of estrogen receptors as well as progesterone resistance- making them susceptible to inflammatory promotion from estrogen (see Role of Estrogen Receptor in Endometriosis).

Pain can lead to sleep problems, and sleep disorders can also cause more inflammation, leading to more pain and fatigue (Lacourt et al., 2018; Zielinski, Systrom, & Rose, 2019). On a good note: “melatonin therapy has been shown to attenuate inflammatory cytokines…thus could potentially be beneficial in combating fatigue” (Zielinski, Systrom, & Rose, 2019). Stress, even good stress, can take a toll on your body and mind. Chronic stress can lead to more inflammation which can contribute to feelings of fatigue (Zielinski, Systrom, & Rose, 2019). Inflammation can affect neurotransmitters which can affect both fatigue and mood (Zielinski, Systrom, & Rose, 2019).  Lee & Giuliani (2019) report that “depression and fatigue are associated with an increased activation of the immune system which may serve as a valid target for treatment.” They also note that “antidepressants have been shown to decrease inflammation” (Lee & Giuliani, 2019).

So we see that many things can contribute to fatigue. Fatigue is difficult to treat, especially if the underlying cause is not addressed. Ramin-Wright et al. (2018) states that “as fatigue is experienced by numerous women with endometriosis, it needs to be addressed in the discussion of management and treatment of the disease. In addition to treating endometriosis, it would be beneficial to reduce insomnia, depression, pain and occupational stress in order to better manage fatigue.” It is also important to remember that fatigue is a symptom of many disorders, so do not automatically assume that endometriosis is the only cause of your fatigue- it’s important to rule out other causes too.

Resources:

• “Endometriosis Fatigue Management”
• “This Is What Chronic Fatigue Feels Like”
• “Fatigue is a constant state of being tired—not sleepy, but physically exhausted.”

References

Lee, C. H., & Giuliani, F. (2019). The role of inflammation in depression and fatigue. Frontiers in immunology, 10, 1696. Retrieved from https://doi.org/10.3389/fimmu.2019.01696

García-Gómez, E., Vázquez-Martínez, E. R., Reyes-Mayoral, C., Cruz-Orozco, O. P., Camacho-Arroyo, I., & Cerbón, M. (2020). Regulation of inflammation pathways and inflammasome by sex steroid hormones in endometriosis. Frontiers in endocrinology, 10, 935. Retrieved from https://doi.org/10.3389/fendo.2019.00935

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.

Louati, K., & Berenbaum, F. (2015). Fatigue in chronic inflammation-a link to pain pathways. Arthritis research & therapy, 17(1), 1-10. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4593220/

Poon, D. C. H., Ho, Y. S., Chiu, K., Wong, H. L., & Chang, R. C. C. (2015). Sickness: From the focus on cytokines, prostaglandins, and complement factors to the perspectives of neurons. Neuroscience & biobehavioral reviews, 57, 30-45. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0149763415002006

Ramin-Wright, A., Schwartz, A. S. K., Geraedts, K., Rauchfuss, M., Wölfler, M. M., Haeberlin, F., … & Leeners, B. (2018). Fatigue–a symptom in endometriosis. Human reproduction, 33(8), 1459-1465. Retrieved from https://academic.oup.com/humrep/article/33/8/1459/5040620?login=true

Taber’s Medical Dictionary. (n.d.). Fatigue. Retrieved from https://www.tabers.com/tabersonline/view/Tabers-Dictionary/757231/all/fatigue

Zielinski, M. R., Systrom, D. M., & Rose, N. R. (2019). Fatigue, sleep, and autoimmune and related disorders. Frontiers in immunology, 10, 1827. Retrieved from https://doi.org/10.3389/fimmu.2019.01827

4 years ago Endometriosis , Endometriosis Education

Ehlers Danlos and endometriosis

• Ehlers Danlos syndrome (EDS) is a connective tissue disorder that can affect skin, joints, and many tissues in the body by its effect on collagen (National Organization for Rare Diseases, 2017).

• There are not many available studies on any association between endometriosis and Ehlers Danlos. Heavy menstrual bleeding, irregular menstruation, and severe pain during menstruation are symptoms of Ehlers Danlos (Castori, 2012). One study noted that, while those with Ehlers Danlos experience many common symptoms of endometriosis such as painful periods and painful penetration, “endometriosis was not highly prevalent in this population” (Hugon-Rodin et al., 2016). Another study also notes that “only occasionally” are those symptoms “related to an underlying gynecologic disorder, such as endometriosis” (Castori, 2012). In a presentation to the Ehlers Danlos Society in 2018, Dr. Blagowidow cites 6-23% of those with EDS also have endometriosis.

• The incidence of Ehlers-Danlos syndrome is between 1 in 2500 and 1 in 5000 (Miklovic & Sieg, 2019). The incidence of endometriosis is 1 in 10 (Parasar, Ozcan, & Terry, 2017). There may be overlap in the conditions, but nothing definitive has been discovered associating it and endometriosis, aside from common symptoms.

• There are not many resources for treating the pelvic pain associated with Ehlers Danlos syndrome. NSAIDS, vitamin B1, magnesium, acupuncture, oral contraceptive pills, progesterone (pills or intrauterine device), and physical therapy are recommendations from Dr. Natalie Blagowidow (2018) to the Ehlers Danlos Society. You can read more about treatment options for endometriosis here.

References

Blagowidow, N. (2018). OB/GYN and EDS/HDS. Retrieved from https://www.ehlers-danlos.com/pdf/2018-annual-conference/N-Blagowidow-2018Baltimore-OB-GYN-and-EDS-HSD-S.pdf

Castori, M. (2012). Ehlers-danlos syndrome, hypermobility type: an underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular, and systemic manifestations. International Scholarly Research Notices, 2012.  Retrieved from https://www.hindawi.com/journals/isrn/2012/751768/

Hugon-Rodin, J., Lebègue, G., Becourt, S., Hamonet, C., & Gompel, A. (2016). Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type Ehlers-Danlos syndrome: a cohort study. Orphanet Journal of Rare Diseases, 11(1), 1-6. Retrieved from https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0511-2

Miklovic, T., & Sieg, V. C. (2019). Ehlers Danlos Syndrome. Retrieved from  https://www.ncbi.nlm.nih.gov/books/NBK549814/

National Organization for Rare Diseases. (2017). Ehlers Danlos Syndromes. Retrieved from https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/#symptoms

Parasar, P., Ozcan, P., & Terry, K. L. (2017). Endometriosis: epidemiology, diagnosis and clinical management. Current obstetrics and gynecology reports, 6(1), 34-41. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5737931/#:~:text=Endometriosis%20affects%2010%E2%80%9315%25%20of,and%20reduced%20quality%20of%20life.

4 years ago Endometriosis , Endometriosis Education

Table of Contents

Here is an updated Table of Contents:

WHAT IS ENDOMETRIOSIS

1. Endometriosis Overview
2. Staging, “Minimal” Disease, and DIE
3. ORIGIN THEORIES OF ENDOMETRIOSIS
   1. Origin Theories of Endometriosis
   2. More Evidence Against Reflux Theory of Origin
4. APPEARANCES OF ENDOMETRIOSIS
   1. The Many Appearances of Endo
   2. Histology of Endometriosis
5. LOCATIONS OF ENDOMETRIOSIS
   1. Locations of endometriosis
   2. Weird places endometriosis has been found
6. BEHAVIOR OF ENDOMETRIOSIS
   1. Role of Estrogen Receptor-β in Endometriosis
   2. Progesterone Resistance in Endometriosis
   3. Leptin and its role in endometriosis
7. MORE IN DEPTH ON ENDO
   1. Risks of Heart Disease, Perspective on Research

SYMPTOMS

1. Symptoms
2. Symptoms Based on Endometriosis Locations
3. PAIN
   1. Introduction: Pain
   2. What influences pain levels?
   3. Pain Associated with Minimal Endometriosis
   4. Location of lesions and where pain is felt
   5. Pelvic Floor Dysfunction links
   6. Pain with Penetration
   7. Brokengirl: The secret shame of chronic pelvic pain and the unseen consequences of our current care paradigm for endometriosis care
   8. Sciatic Pain and Endometriosis
   9. Nerves and endometriosis
4. SEXUAL FUNCTIONING
   1. Pain with Penetration
   2. Post coital bleeding
5. BOWEL GASTROINTESTINAL
   1. Bowel/GI endometriosis
6. FATIGUE AND INFLAMMATION
   1. Inflammation with endometriosis
   2. Inflammatory markers and endometriosis (CRP and CA-125)
   3. Fatigue in Endometriosis
   4. Response to a study on prostaglandins and bacterial growth in endometriosis
7. INFERTILITY
   1. Fertility Issues
   2. Infertility links
8. THORACIC (DIAPHRAGM)
   1. Thoracic Endometriosis
   2. Comments on Thoracic Endometriosis
9. OVARIES
   1. Ovaries and Endometriomas
10. URINARY (BLADDER, URETERS, AND KIDNEYS)
    1. Urinary System (Bladder, Ureters, and Kidney)
11. OTHER
    1. Endometriosis Systemic Effects
    2. Immune System
    3. Adhesion Related Information
    4. Endometriosis and Exercise

DIAGNOSIS

1. Surgery
2. Ultrasound Use with Endometriosis
3. Magnetic Resonance Imaging (MRI’s) and endometriosis
4. Labwork and Blood Tests
5. But your tests are all negative?
6. Clinical diagnosis of endometriosis: a call to action- from AJOG

TREATMENT

1. How is endometriosis treated?
2. The Standard of Care is Not Sufficient!
3. The Triad of Successful Endometriosis Treatment
4. SURGERY
   1. Why Surgery
   2. Why excision is recommended
   3. Endometriosis Appearance and Location: Impact on Surgical Success
   4. The Cost Effectiveness of Surgical Excision of Endometriosis: an unpublished study
   5. Should laser vaporization and electrocoagulation of endometriosis be banned
   6. Robotic Surgery
   7. Adhesion prevention
   8. Pelvic Adhesions
   9. What to Expect in the Weeks After Skilled Excision Surgery
   10. Managing expectations pre-op and post op
   11. Bowel Endometriosis Surgical Treatment
5. MEDICATIONS
   1. Pain Medications
   2. Hormonal Medications
   3. A Quick Guide to Pain Control
   4. Medication to Prevent Recurrence
   5. Effects of long term low estrogen states
6. PHYSICAL THERAPY
   1. “Everyone should do Kegels” and other pelvic floor myths
   2. Physical Therapy Resources
   3. Pelvic Physical Therapy
7. OTHER THERAPIES
   1. Pain Management
   2. Mental Health
   3. Alternative and Complementary Therapies
   4. Diet and Nutrition

RELATED CONDITIONS

1. Adenomyosis
2. Endometrial/Uterine Polyps
3. Interstitial Cystitis/Bladder Pain Syndrome
4. Pelvic Floor Dysfunction
5. Fibroids (Leiomyomas)
6. Polycystic Ovarian Syndrome (PCOS)
7. Pudendal Neuralgia and Vulvodynia
8. Pelvic Congestion Syndrome
9. Occult Hernia
10. Migraines and Endometriosis

RESOURCES

1. Choosing your surgeon
2. Managing the relationship with your current doctor
3. Personal Medical History Template
4. Things to pack for the Hospital
5. Why Patients Have a Role to Play in Changing the Status Quo of Endometriosis
6. Endometriosis: The Patient Perspective (an AAGL presentation)
7. Giving Women Control of their Healthcare: from the APPG
8. UK Resources
9. Australia Resources
10. PREPARING FOR SURGERY- PRE AND POST OPERATIVE
    1. Before Surgery
    2. After Surgery: What to Expect
11. LINKS, VIDEOS, AND PODCASTS
    1. Articles and Website Links
    2. Podcasts and Videos
12. INSURANCE AND FINANCES
    1. Tips for Dealing with Insurance
    2. Insurance: Tricare
    3. Lack of Surgery Reimbursement in the US
    4. Endometriosis affects absenteeism and presenteeism
13. INFERTILITY
    1. Infertility links
14. TEENS
    1. Teens and Endometriosis
15. PREGNANCY
    1. Pregnancy and Endometriosis
16. LGBTQIA
    1. LGBTQIA+ Resources
    2. Transgender and Endometriosis Studies

FREQUENTLY ASKED QUESTIONS

1. Is there a link between heart disease and endometriosis?
2. What effects can long term low estrogen cause?
3. Can endometriosis persist after hysterectomy/ovary removal
4. Is There Microscopic or Occult Endometriosis
5. Is endometriosis an autoimmune disease?
6. Does endometriosis increase my risk of cancer?
7. Myths and Misinformation

PATIENT STORIES

1. Barriers to Care
2. Endometriosis: A Husband’s Perspective
3. Endometriosis is so much worse than a bad period
4. Study on the “Impact of endometriosis on women’s lives”
5. Parenting is Hard, Even Harder with Endometriosis
6. Coping with Endometriosis

4 years ago Endometriosis , Endometriosis Education

Endometriosis Getting on Your Nerves?

It really is! “Endometriosis lesions are known to be hyperinnervated” (Liu, Yan, & Guo, 2019). People with endometriosis have abnormal nerve growth and nerve fibers close to endometriosis lesions (Zheng, Zhang, Leng, & Lang, 2019). Pain with endometriosis is multifactorial, including irritation of nerves in the pelvis, new nerve growth, heightened sensitivity to pain, inflammation in the pelvis, and pain producing agents in the pelvic fluid (Ferrero, Vellone, & Barra, 2019).  The interplay between nerves and inflammation is believed to play a significant role in pain. There are increased levels of multiple inflammatory factors in and around endometriosis lesions (Wei et al., 2020). Endometriosis “can also directly irritate and infiltrate pelvic nerves promoting endometriosis-associated pain” (Ferrero, Vellone, & Barra, 2019) and can lead “to corresponding neurological symptoms or deficits” (Working group of ESGE et al., 2020). Of all the nerve!!

Read more below:

Studies:

• Liu, X., Yan, D., & Guo, S. W. (2019). Sensory nerve-derived neuropeptides accelerate the development and fibrogenesis of endometriosis. Human Reproduction, 34(3), 452-468. Retrieved from https://academic.oup.com/humrep/article-abstract/34/3/452/5303712

“Endometriotic lesions are known to be hyperinnervated due to neurogenesis resulting from neutrophins secreted by endometriotic lesions and possibly platelets. These neutrophins seem to preferentially favour production of sensory neurons at the expense of sympathetic neurons….Since sensory nerves are known to be important in wound healing and fibrogenesis, our findings also give more credence to the notion that endometriotic lesions are wounds undergoing repeated tissue injury and repair.”

• Wei, Y., Liang, Y., Lin, H., Dai, Y., & Yao, S. (2020). Autonomic nervous system and inflammation interaction in endometriosis-associated pain. Journal of Neuroinflammation, 17(1), 1-24. Retrieved from https://link.springer.com/article/10.1186/s12974-020-01752-1

“…endometriosis is certainly a chronic inflammation disorder [4]. The levels and concentrations of active macrophages; interleukin (IL)-1β, IL-6, IL-8; nerve growth factor (NGF); other immune cells; and inflammatory factors are increased in peritoneal fluid (PF) and endometriotic lesions [4,5,6]. These changes are believed to contribute to serious symptoms of pain such as chronic pelvic pain, dysmenorrhea, and dyspareunia [7]. Notably in deep infiltrating endometriosis (DIE) and intestinal endometriosis, the anatomical distribution of lesions is normally more closely related to pelvic pain symptoms [2]. Abnormal innervations are observed in most endometriotic lesions: an increased number of total intact nerve fibers, increased sensory and decreased sympathetic nerve fiber density (NFD) [6], the occurrence of cholinergic and unmyelinated nerve fibers, etc. [8] In various studies, these abnormal phenomena have been correlated with endometriosis-associated pain [6, 8,9,10]. More importantly, sympathetic and parasympathetic systems have different inflammation-related effects in different stages of inflammation [10].”

• Zheng, P., Zhang, W., Leng, J., & Lang, J. (2019). Research on central sensitization of endometriosis-associated pain: a systematic review of the literature. Journal of pain research, 12, 1447. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6514255/

“A growing body of evidence attests that patients with endometriosis endure pain associated with abnormal angiogenesis and the growth of novel nerve fibers in close proximity to ectopic lesions. Endometriotic lesions create an inflammatory environment and change the quality or quantity of inflammatory mediators or neurotransmitters, thereby stimulating peripheral nerve sensitization by remodeling the structure of peripheral synapses and accelerating conduction along nerve fibers…. Endometriosis-related pain is currently considered a form of neuropathic or neuroinflammatory pain.”

• Ferrero, S., Vellone, V. G., & Barra, F. (2019). Pathophysiology of pain in patients with peritoneal endometriosis. Annals of translational medicine, 7(Suppl 1). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6462618/

“The pathophysiology of the association between pain and endometriosis is still enigmatic. The cause of pain is likely to be multifactorial (Table 1) (9,10). In patients with severe endometriosis with large ovarian cysts and DIE, pain can be caused by the distortion of the pelvic anatomy and by the presence of extensive adhesions (involving the uterus, the ovaries and the rectosigmoid) (Figure 1) (10). However, there is a poor correlation between the degree of pain and the severity of endometriosis. Some patients with intense pain symptoms have only small endometriotic implants on the peritoneal surface while other patients with severe endometriosis are almost asymptomatic….patients with endometriosis have an inflammatory process within the peritoneal cavity. In fact, women with endometriosis have increased concentration of inflammatory cells (macrophages and T lymphocytes), chemokines (MCP1, RANTES), inflammatory cytokines (IL1β, IL6, IL8, TNFα) and inflammatory molecules in the peritoneal fluid (11). These molecules and cells can sensitize peripheral nerves promoting the generation of pain (12). In addition, some pain-inducing molecules (such as prostaglandins) have elevated concentration in peritoneal fluid of women with endometriosis. Finally, endometriotic nodule can also directly irritate and infiltrate pelvic nerves promoting endometriosis-associated pain (13).”

• Working group of ESGE, ESHRE, and WES, Keckstein, J., Becker, C. M., Canis, M., Feki, A., Grimbizis, G. F., … & Tanos, V. (2020). Recommendations for the surgical treatment of endometriosis. Part 2: deep endometriosis. Human Reproduction Open, 2020(1), hoaa002. Retrieved from https://academic.oup.com/hropen/article/2020/1/hoaa002/5733057

“Endometriosis close to the sympathetic and parasympathetic nerve fibres (hypogastric plexus and splanchnic nerves) can lead to a dysfunction of pelvic organs (e.g. dysfunction of the bladder as well as disturbance of vaginal lubrication and intestinal dysfunction) (Possover, 2014). Involvement of somatic nerves, such as the sacral plexus and the sciatic nerve, leads to corresponding neurological symptoms or deficits.”

References

Ferrero, S., Vellone, V. G., & Barra, F. (2019). Pathophysiology of pain in patients with peritoneal endometriosis. Annals of translational medicine, 7(Suppl 1). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6462618/

Liu, X., Yan, D., & Guo, S. W. (2019). Sensory nerve-derived neuropeptides accelerate the development and fibrogenesis of endometriosis. Human Reproduction, 34(3), 452-468. Retrieved from https://academic.oup.com/humrep/article-abstract/34/3/452/5303712

Wei, Y., Liang, Y., Lin, H., Dai, Y., & Yao, S. (2020). Autonomic nervous system and inflammation interaction in endometriosis-associated pain. Journal of Neuroinflammation, 17(1), 1-24. Retrieved from https://link.springer.com/article/10.1186/s12974-020-01752-1

Working group of ESGE, ESHRE, and WES, Keckstein, J., Becker, C. M., Canis, M., Feki, A., Grimbizis, G. F., … & Tanos, V. (2020). Recommendations for the surgical treatment of endometriosis. Part 2: deep endometriosis. Human Reproduction Open, 2020(1), hoaa002. Retrieved from https://academic.oup.com/hropen/article/2020/1/hoaa002/5733057

Zheng, P., Zhang, W., Leng, J., & Lang, J. (2019). Research on central sensitization of endometriosis-associated pain: a systematic review of the literature. Journal of pain research, 12, 1447. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6514255/

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