Pain with endometriosis is complex and its treatment might include a variety of therapies. Removing the original source of pain (endometriosis lesions) as early as possible is important because over time pain becomes more complex. As Chiantera et al. (2017) puts it, “it is hard to break the cycle of pain when chronic pain syndrome is already apparent”. As long as endometriosis lesions are present, irritation to muscles and nerves that can cause pain will continue. Addressing the underlying problem is important for long term goals. It is also important to address other pain generators, such as pelvic floor dysfunction or interstitial cystitis/bladder pain syndrome. Nancy Petersen has stated that:
Other pelvic pain generators need to be addressed when pain persists after EXPERT excision. It is common for the disease to be missed by general gynecology at surgery, or for the disease to be intentionally left when the surgeon does not have the skills or training or when they believe they can “clean up” endo with medication (medication/hormonal treatments may seek to alleviate symptoms but do NOT stop the progression of the disease). Other pelvic pain generators need to be identified, and a treatment plan devised for each. You cannot remove endometriosis and expect pelvic floor dysfunction to fully resolve. Nor does the removal of endometriosis address a painful uterus with adenomyosis, nor does excision resolve ovarian cysts which can return by pushing up from the body of the ovary with cycles. Bladder issues, such as interstitial cystitis, will also need its own treatment plan if present. Wellness is a journey, while some will feel well with endometriosis excised, others will have other issues that need attention.
-Nancy Petersen
There are times when we may not be in a position to achieve that expert excision yet. We may have other pain generators that need to be addressed. So, what are some options to help address chronic pelvic pain?
- Medications: While a temporary symptoms management tool, different medications, including hormonal and nonhormonal ones, are options. Some nonhormonal medications might include things to help muscle tightness or nerve pain. It is important to discuss a plan with your provider. While different medications can be used to help alleviate chronic pelvic pain and other related conditions, alleviate does not necessarily mean eliminate. It is important to discuss with your provider the risks and benefits to your body, because everyone will respond differently and have other issues to consider when choosing a medication.
- Pelvic Physical Therapy: “Pelvic physical therapy has been shown in a retrospective study to improve endometrial pain in 63% of patients after at least six sessions”(Nezhat et al., 2020). Find more resources about pelvic physical therapy here
- Pelvic Floor Injections: A small study noted an improvement in symptoms related to intercourse, sleeping, and working with pelvic floor trigger point injections (Plavnik et al., 2020). Another small study noted that botulinum toxin injections (Botox) might help with pain from pelvic floor spasms associated with endometriosis (Tandon et al., 2019). Neither of the studies identified side effects from the injections.
- Diet and nutrition: Some have found symptom management with dietary changes. There is not a set diet for endometriosis- it usually takes a few trials of different dietary changes to find which helps your body. Other nutritional components might help. There is also a different diet for issues such as painful bladder syndrome (interstitial cystitis). Find more info here
- TENS unit: “Both types of TENS machines (acupuncture like and self-applied) provided symptomatic pain relief for chronic pelvic pain and deep dyspareunia. Pain with defecation improved with the use of the acupuncture-like TENS” (O’Hara et al., 2019).
- Massage: A small study notes that “it seems that massage therapy can be a fitting method to reduce the menstrual pain caused by endometriosis” (Valiani et al., 2010).
- Alternative and Complementary Therapies: There is some evidence for yoga and acupuncture to help manage symptoms. You can find more information here
- CBD: “Cannabidiol (CBD), one of the major phytocannabinoids, has gained significant attraction because it is devoid of the psychoactive effects associated with tetrahydrocannabinol (THC), another major constituent of cannabis” (Argueta et al., 2020). Argueta et al. (2020) reports that “in studies of generalized chronic pain, CBD treatment did not significantly reduce measures of pain, however there was consistent improvement in patient-reported quality of life and quality of sleep”. They also report another study “indicated its safety for prolonged use, which was accompanied by self-reported improvements in pain and quality of life” (Argueta et al., 2020). However, as it is an over-the-counter product, the contents may not necessarily be what the label states (either with less or more CBD content and might contain impurities), thus finding one that has been third party tested is important (Argueta et al., 2020). With specific regards to endometriosis, Nahler (2020) states: “At present, only population-based surveys suggest that cannabinoids reduce pain and other symptoms in women affected by endometriosis. Whereas a majority of women who have used cannabis confirm its efficacy, it is not without risks. Of the two main active compounds, d9-tetrahydrocannabinol (THC) and cannabidiol (CBD), CBD has the advantage of not being psychotomimetic, therefore not causing the typical “high”. It is not a “scheduled drug”, does not interfere with workplace testing or police controls when driving, and is well tolerated also when taken as long-term treatment. Pure CBD is devoid of potential impurities which are frequently found in “street cannabis”. This could be a safe and novel approach for the treatment of endometriosis.”
- Mental Health Care: Chronic pain can significantly affect our mental health and quality of life. It’s important to care for ourselves as a whole person. Find information about mental health here
When we asked on Nancy’s Nook Facebook page what many of you did to help cope with endometriosis, the most often used coping method was heat, whether from a heating pad, warm bath, or other source. While some noted that ice helped them more than heat, heat was the most often utilized. The second most common was dietary changes. These changes were highly individualized and ranged from vegan to gluten free to a clean or trigger free diet to a low histamine diet and more. Third most commonly used was distraction. Distractions varied but included art, music, television, or browsing on a mobile device.
This is of course not a comprehensive list, but a starting point. As Velez (2021) put it: “There is no magic pill for chronic pelvic pain. Managing your pain takes a lot of research, persistence, and compassion, and not just from your team of specialists. Your family, partner, friends and colleagues need to understand that you are on a journey, and that you need their patience and support….But more importantly, we need to stop normalizing pain, especially for women. You do not have to “just learn to live with it.” There are solutions, and no, a glass of wine is not one of them. Pelvic pain requires multimodal treatment with a team of doctors. We still have a lot to learn about it, so we don’t necessarily have all the answers. But researchers are looking into its causes and treatments.”
References
Argueta, D. A., Ventura, C. M., Kiven, S., Sagi, V., & Gupta, K. (2020). A balanced approach for cannabidiol use in chronic pain. Frontiers in pharmacology, 11, 561. Retrieved from https://doi.org/10.3389/fphar.2020.00561
Chiantera, V., Abesadze, E., & Mechsner, S. (2017). How to understand the complexity of endometriosis-related pain. Journal of Endometriosis and Pelvic Pain Disorders, 9(1), 30-38. Retrieved from https://doi.org/10.5301/je.5000271
Nahler, G. (2020). Endometriosis–an indication for cannabinoids?. Traditional Medicine 1(1): 01. Retrieved from https://doi.org/10.35702/Trad.10001
Nezhat, C., Vang, N., Tanaka, P. P., & Nezhat, C. H. (2020). Optimal management of endometriosis and pain. Endometriosis in Adolescents, 195-204. doi: 10.1097/AOG.000000000000346
Plavnik, K., Tenaglia, A., Hill, C., Ahmed, T., & Shrikhande, A. (2020). A Novel, Non‐opioid Treatment for Chronic Pelvic Pain in Women with Previously Treated Endometriosis Utilizing Pelvic‐Floor Musculature Trigger‐Point Injections and Peripheral Nerve Hydrodissection. Pm&r, 12(7), 655-662. Retrieved from https://doi.org/10.1002/pmrj.12258
Tandon, H. K., Stratton, P., Sinaii, N., Shah, J., & Karp, B. I. (2019). Botulinum toxin for chronic pelvic pain in women with endometriosis: a cohort study of a pain-focused treatment. Regional Anesthesia & Pain Medicine, 44(9), 886-892. Retrieved from http://dx.doi.org/10.1136/rapm-2019-100529
Valiani, M., Ghasemi, N., Bahadoran, P., & Heshmat, R. (2010). The effects of massage therapy on dysmenorrhea caused by endometriosis. Iranian journal of nursing and midwifery research, 15(4), 167. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093183/
Velez, A. (2021). The Empowered Patient’s Guide to Pelvic Pain. Retrieved from https://www.practicalpainmanagement.com/patient/conditions/pelvic-pain/empowered-patient-guide-pelvic-pain