Self-management strategies amongst Australian women with endometriosis: a national online survey

Mike Armour, Justin Sinclair, K Jane Chalmers, Caroline A Smith, Mike Armour, Justin Sinclair, K Jane Chalmers, Caroline A Smith

Abstract

Background: Endometriosis has a significant negative impact on the lives of women, and current medical treatments often do not give sufficient pain relief or have intolerable side effects for many women. The majority of women with primary dysmenorrhea use self-management strategies (including self-care techniques or lifestyle choices) to help manage period related symptoms, but little is known about self-management in women with endometriosis. The aim of this survey was to determine the prevalence of use, safety, and self-rated effectiveness of common forms of self-management.

Methods: A cross-sectional online survey was distributed via social media using endometriosis support and advocacy groups in Australia between October and December 2017. Women were eligible to answer the survey if they were 18-45, lived in Australia, and had a confirmed diagnosis of endometriosis. Survey questions covered the types of self-management used, improvements in symptoms or reduction in medication, and safety.

Results: Four hundred and eighty-four valid responses were received. Self-management strategies, consisting of self-care or lifestyle choices, were very common (76%) amongst women with endometriosis. The most common forms used were heat (70%), rest (68%), and meditation or breathing exercises (47%). Cannabis, heat, hemp/CBD oil, and dietary changes were the most highly rated in terms of self-reported effectiveness in pain reduction (with mean effectiveness of 7.6, 6.52, 6.33, and 6.39, respectively, on a 10-point scale). Physical interventions such as yoga/Pilates, stretching, and exercise were rated as being less effective. Adverse events were common, especially with using alcohol (53.8%) and exercise (34.2%).

Conclusions: Self-management was very commonly used by women with endometriosis and form an important part of self-management. Women using cannabis reported the highest self-rated effectiveness. Women with endometriosis have unique needs compared to women with primary dysmenorrhea, and therefore any self-management strategies, especially those that are physical in nature, need to be considered in light of the potential for 'flare ups'.

Keywords: Cannabis; Endometriosis; Exercise; Heat; Self-care; Self-management.

Conflict of interest statement

Ethics approval and consent to participate

This survey was approved by the Western Sydney University Human Research Ethics Committee, approval number H12394. Participants were advised in the participant information sheet and survey introduction (prior to starting the survey) that consent was implied by completing the survey.

Consent for publication

Not applicable

Competing interests

MA, JS and CS: As a medical research institute, NICM Health Research Institute receives research grants and donations from foundations, universities, government agencies and industry. Sponsors and donors provide untied and tied funding for work to advance the vision and mission of the Institute. This survey was not specifically supported by donor or sponsor funding to NICM.

In addition, JS sits on the Scientific Advisory Board for BioCeuticals. He is also on the Scientific Advisory Board for United in Compassion in a pro bono capacity.

KJC: None known.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

References

    1. Howard F, Perry P, Carter J, El-Minawi A. Pelvic pain: diagnosis and management. Philadelphia: Lippincott Williams and Wilkins; 2000.
    1. Ahangari A. Prevalence of chronic pelvic pain among women: an updated review. Pain Physician. 2014;17(2):E141–E147.
    1. Hickey M, Ballard K, Farquhar C. Endometriosis. BMJ. 2014;348:g1752.
    1. Whitaker LH, Reid J, Choa A, McFee S, Seretny M, Wilson J, Elton RA, Vincent K, Horne AW. An exploratory study into objective and reported characteristics of neuropathic pain in women with chronic pelvic pain. PLoS One. 2016;11(4):e0151950.
    1. Mowers EL, Lim CS, Skinner B, Mahnert N, Kamdar N, Morgan DM, As-Sanie S. Prevalence of endometriosis during abdominal or laparoscopic hysterectomy for chronic pelvic pain. Obstet Gynecol. 2016;127(6):1045–1053.
    1. Fisher C, Adams J, Hickman L, Sibbritt D. The use of complementary and alternative medicine by 7427 Australian women with cyclic perimenstrual pain and discomfort: a cross-sectional study. BMC Complement Altern Med. 2016;16:129.
    1. Nnoaham KE, Hummelshoj L, Webster P, d'Hooghe T, de Cicco Nardone F, de Cicco Nardone C, Jenkinson C, Kennedy SH, Zondervan KT, World Endometriosis Research Foundation Global Study Of Women’s Health c: Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011, 96(2):366–373 e368.
    1. Sepulcri Rde P, do Amaral VF. Depressive symptoms, anxiety, and quality of life in women with pelvic endometriosis. Eur J Obstet Gynecol Reprod Biol. 2009;142(1):53–56.
    1. Pluchino N, Wenger JM, Petignat P, Tal R, Bolmont M, Taylor HS, Bianchi-Demicheli F. Sexual function in endometriosis patients and their partners: effect of the disease and consequences of treatment. Hum Reprod Update. 2016;22(6):762–774.
    1. Brown J, Farquhar C. Endometriosis: an overview of Cochrane reviews. Cochrane Database Syst Rev. 2014;3:CD009590.
    1. Sinaii N, Cleary SD, Younes N, Ballweg ML, Stratton P. Treatment utilization for endometriosis symptoms: a cross-sectional survey study of lifetime experience. Fertil Steril. 2007;87(6):1277–1286.
    1. Banikarim C, Chacko MR, Kelder SH. Prevalence and impact of dysmenorrhea on Hispanic female adolescents. Arch Pediatr Adolesc Med. 2000;154(12):1226–1229.
    1. Hillen TI, Grbavac SL, Johnston PJ, Straton JA, Keogh JM. Primary dysmenorrhea in young Western Australian women: prevalence, impact, and knowledge of treatment. J Adolesc Health. 1999;25(1):40–45.
    1. Moore JS, Gibson PR, Perry RE, Burgell RE. Endometriosis in patients with irritable bowel syndrome: specific symptomatic and demographic profile, and response to the low FODMAP diet. Aust N Z J Obstet Gynaecol. 2017;57(2):201–205.
    1. Goncalves AV, Barros NF, Bahamondes L. The practice of hatha yoga for the treatment of pain associated with endometriosis. J Altern Complement Med. 2017;23(1):45–52.
    1. Challenge #1 Results []. Accessed 10 Feb 2018.
    1. Bouaziz J, Bar On A, Seidman DS, Soriano D. The clinical significance of endocannabinoids in endometriosis pain management. Cannabis Cannabinoid Res. 2017;2(1):72–80.
    1. Chalmers KJ, Catley MJ, Evans SF, Moseley GL. Clinical assessment of the impact of pelvic pain on women. Pain. 2017;158(3):498–504.
    1. MacKichan F, Paterson C, Henley WE, Britten N. Self-care in people with long term health problems: a community based survey. BMC Fam Pract. 2011;12:53.
    1. Culley L, Law C, Hudson N, Denny E, Mitchell H, Baumgarten M, Raine-Fenning N. The social and psychological impact of endometriosis on women's lives: a critical narrative review. Hum Reprod Update. 2013;19(6):625–639.
    1. Roomaney R, Kagee A. Coping strategies employed by women with endometriosis in a public health-care setting. J Health Psychol. 2016;21(10):2259–2268.
    1. Armour M, Dahlen HG, Smith CA. More than needles: the importance of explanations and self-care advice in treating primary dysmenorrhea with acupuncture. Evid Based Complement Alternat Med. 2016;2016:3467067.
    1. Thorne S, Paterson B, Russell C, Schultz A. Complementary/alternative medicine in chronic illness as informed self-care decision making. Int J Nurs Stud. 2002;39(7):671–683.
    1. Moradi M, Parker M, Sneddon A, Lopez V, Ellwood D. Impact of endometriosis on women’s lives: a qualitative study. BMC Womens Health. 2014;14(1):123.
    1. Ek M, Roth B, Ekstrom P, Valentin L, Bengtsson M, Ohlsson B. Gastrointestinal symptoms among endometriosis patients-a case-cohort study. BMC Womens Health. 2015;15:1472–6874.
    1. Parazzini F, Vigano P, Candiani M, Fedele L. Diet and endometriosis risk: a literature review. Reprod BioMed Online. 2013;26(4):323–336.
    1. Akin M, Price W, Rodriguez G, Erasala G, Hurley G, Smith RP. Continuous, low-level, topical heat wrap therapy as compared to acetaminophen for primary dysmenorrhea. J Reprod Med. 2004;49(9):739–745.
    1. Kuntz A. Anatomic and physiologic properties of cutaneous-visceral vasomotor reflex arcs. J Neurophysiol. 1945;8:421–429.
    1. Aggarwal SK. Cannabinergic pain medicine: a concise clinical primer and survey of randomized-controlled trial results. Clin J Pain. 2013;29(2):162–171.
    1. Rahn EJ, Hohmann AG. Cannabinoids as pharmacotherapies for neuropathic pain: from the bench to the bedside. Neurotherapeutics. 2009;6(4):713–737.
    1. Bolognini D, Costa B, Maione S, Comelli F, Marini P, Di Marzo V, Parolaro D, Ross RA, Gauson LA, Cascio MG, et al. The plant cannabinoid Delta9-tetrahydrocannabivarin can decrease signs of inflammation and inflammatory pain in mice. Br J Pharmacol. 2010;160(3):677–687.
    1. Upton R, ElSohly M, Romm A, Russo E, Sexton M, editors. Cannabis inflorescence. Scotts Valley: American Herbal Pharmacopoeia; 2013.
    1. Lucas P, Walsh Z. Medical cannabis access, use, and substitution for prescription opioids and other substances: a survey of authorized medical cannabis patients. Int J Drug Policy. 2017;42:30–35.
    1. Lucas P. Rationale for cannabis-based interventions in the opioid overdose crisis. Harm Reduct J. 2017;14(1):58.
    1. Bachhuber MA, Saloner B, Cunningham CO, Barry CL. Medical cannabis laws and opioid analgesic overdose mortality in the United States, 1999-2010. JAMA Intern Med. 2014;174(10):1668–1673.
    1. Matthewman G, Lee A, Kaur JG, Daley AJ. Physical activity for primary dysmenorrhea: a systematic review and meta-analysis of randomized controlled trials. Am J Obstet Gynecol. 2018;219(3):255.e1–255.e20.
    1. Sumpton JE, Moulin DE. Fibromyalgia: presentation and management with a focus on pharmacological treatment. Pain Research and Management. 2008;13(6):477–483.
    1. Airaksinen O, Brox JI, Cedraschi C, Hildebrandt J, Klaber-Moffett J, Kovacs F, Mannion AF, Reis S, Staal J, Ursin H. Chapter 4 European guidelines for the management of chronic nonspecific low back pain. Eur Spine J. 2006;15:s192–s300.
    1. Lively MW. Sports medicine approach to low back pain. South Med J. 2002;95(6):642–646.
    1. Alappattu MJ, Bishop MD. Psychological factors in chronic pelvic pain in women: relevance and application of the fear-avoidance model of pain. Phys Ther. 2011;91(10):1542–1550.
    1. Butler DS, Moseley GL. Explain pain 2nd Edn: Noigroup Publications; 2013.
    1. Awad E, Ahmed HAH, Yousef A, Abbas R. Efficacy of exercise on pelvic pain and posture associated with endometriosis: within subject design. J Phys Ther Sci. 2017;29(12):2112–2115.
    1. Geneen LJ, Moore A, Clarke C, Martin D, Colvin LA, Smith BH. Physical activity and exercise for chronic pain in adults: an overview of Cochrane reviews. Cochrane Database Syst Rev. 2017;4:CD011279.
    1. Lessler JT, O’Reilly JM. Mode of interview and reporting of sensitive issues: design and implementation of audio computer-assisted self-interviewing. NIDA Res Monogr. 1997;167(366):382.
    1. De Graaff AA, Dirksen CD, Simoens S, De Bie B, Hummelshoj L, D'Hooghe TM, Dunselman GAJ. Quality of life outcomes in women with endometriosis are highly influenced by recruitment strategies. Hum Reprod. 2015;30(6):1331–1341.

Source: PubMed

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