A Guide to Pain Management
By Dannielle Stewart
Endometriosis and adenomyosis are not simply diseases of the uterus or reproductive system, we know that these conditions can and do affect the body as a whole, and the symptoms of these conditions are as diverse as the people who are diagnosed with them. Though the symptoms of these conditions can be varied and each individual will experience their own unique set of these, one of the most common and identifiable symptoms of endometriosis and adenomyosis is pain.
Some people may have severe pain, while some may experience little at all, and amount of pain does NOT correlate with severity of disease. However pain can be a debilitating symptom for those with endometriosis or adenomyosis to cope with, it can affect many facets of one’s life including relationships, work, study, and social activities.
Types of Pain You May Experience
Pelvic pain
Pain with periods
Pain with urination
Pain with bowel movements
Pain during sex
Back pain
Leg pain
Headaches
Chest pain (thoracic endometriosis)
Nerve pain
Pain in the region of the pelvis that occurs every day for more than six months is categorised as persistent or chronic pelvic pain. Period pain, endometriosis and adenomyosis are not the only causes of persistent pelvic pain - the pelvis contains many organs including the uterus, ovaries, fallopian tubes, bowel, and bladder. An important step in managing your pain is to identify a cause by seeking a diagnosis from a medical professional, which can help shape your treatment plan.
Strategies for Getting Started
Track Your Symptoms
Pain can be exceptionally varied and is unique for each person, an individual may experience symptoms that they are unaware are even attributable to endometriosis or adenomyosis, which is why it’s important to record your symptoms all month long, not just during period time. This is especially true for those who have not yet received a formal diagnosis and those who do not menstruate.
Many people with endometriosis and adenomyosis find that they experience pain in between periods and even in the absence of them, meaning that focusing just on the period itself may be missing half the story. Your experience is more than just pain; it’s cravings, mood swings, dizziness, nausea, fatigue, digestive issues, bloating, headaches, comorbid conditions like fibromyalgia or POTS. Tracking your symptoms can be helpful for recognising patterns, identifying clusters of symptoms and triggers, and linking symptoms to different points in your cycle.
The QENDO App is an easy way to do this. The app isn’t just to track your cycle and bleeding, which is an important function but only one part of the story - especially for those who do not menstruate or are skipping their bleed using hormonal contraception. When you input your pain data into the app, you’re not just saying you’ve got pain, you’re performing your own thorough pain assessment! You’re able to add the location, intensity, and type of pain you’re experiencing, describing it in detail. You’re also able to track a wide variety of other symptoms, activities in your daily life such as work, exercise and appointments, and food. The list of symptoms and activities you can track is comprehensive, allowing you to develop a comprehensive understanding of your condition, and use this to inform your self care, as well as your prescribed management strategies by sharing the information with your healthcare team.
Using the reporting tool, you can plot pain against, for example, stress or work or exercise, and identify potential triggers and relievers for your symptoms. The more information you input, the more you’re able to understand what makes your symptoms tick and make predictions. When you recognise patterns and triggers, you’re better able to prepare for them, to engage management strategies and share this information with your healthcare team to formulate a plan of action for debilitating symptoms.
A sample report showing pain (blue) compared to work (pink)
See A Pain Specialist
A pain specialist, or pain management physician, is a specialist doctor who has undergone advanced fellowship training in pain medicine. In Australia this is though the Austrian and New Zealand College of Anaesthetists (ANZCA). Doctors may come from a range o specialist background, but are frequently trained anaesthetists. Many specialists who focus their practice on pelvic pain have a background in obstetrics and gynaecology. The pain specialist undertakes a comprehensive and holistic assessment to tailor to each patient an individual pain management strategy that may include both pharmacological and non-pharmacological treatments. You can get a referral from your GP or specialist gynaecologist who you see for endometriosis/adenomyosis, and this may be to a private specialist or public pain management clinic depending on your preference.
A pain specialist can assist with reducing dependence on strong pain relief, or rescue medications, and instead being more proactive in preventing pain and flares, and reducing their severity when they do occur. Opioid pain relief can be helpful for acute pain, but over time we build a tolerance, requiring a higher dose of the same medication to have the same analgesic affect. These medications can also worsen other symptoms like constipation and fatigue, as well as contribute to central sensitisation, the neurological process behind chronic pain. Rescue medications can still be part of your tool kit, but an assessment by a pain specialist will help you add more pain management strategies, both pharmacological and non-pharmacological.
A pain specialist can also recommend other allied health and complementary practitioners like physiotherapists, dieticians, psychologists, or acupuncturists who may be helpful. Each individual will have different needs, and it’s important to find a specialist who you feel comfortable with. You can use the QENDO Referral Lists to find a pain specialist near you who has demonstrated experience with endometriosis, adenomyosis and pelvic pain.
You can share your app reports with your pain specialist, together you can use the information gleaned from tracking to formulate a personalised pain management plan to suit your needs, and change it based on how your symptoms and patterns change in response to the strategies you try. The app can be a great way to really tune in to your body, what are your symptoms telling you? Are your current management strategies actually resulting in an overall reduction in symptoms? This knowledge and understanding is powerful, and is helpful for both you and your specialist to better manage your condition.
Find a Support Network
It’s easy to feel isolated, alone and stressed when you’re coping with a chronic illness, especially if you’re feeling overwhelmed by symptoms and aren’t sure where to start. Finding a community of like-minded people who are going through similar experiences can be life changing. Social connectedness can also help reduce stress, improve coping skills and empower you to take control of your health knowing that you have a support network cheering you on.
Feeling overwhelmed? You can turn to the resources section in your QENDO app, which can directly link you to not only QENDO’s extensive range of support services, but other great support resources too. These resources can also support your partner or family if you want to help them better understand your condition, or if you’re concerned about carer burnout - sometimes carers need care too. Conveniently located within the app are the resources you need, including a live feed from our blog, which has community stories, education pieces, and self care tips. Remember that it’s okay to feel overwhelmed, it’s important to develop positive coping strategies to alleviate these feelings, and a support network is a great place to start. Your support network should also include your healthcare team, reach out to them if you’re feeling the pressure, it might be time to talk about why your pain isn’t under control and what can be done.
Pharmacological Pain Management
There are a variety of medications that can be used for pain management, you should talk with your healthcare team about which ones are right for you. This is a non-exhaustive list of some of the frequently used medications for pain relief which your doctor may prescribe for different kinds of pain in different stages in your journey.
All medications may have side effects, and opioid medications in particular can be addictive. Many find that before diagnosis, and in the postoperative period they benefit from these medications, but then wean themselves onto anti-inflammatories and non-pharmacological pain relief as they recover. If you are having ongoing pain post excision, a pain specialist may recommend medications and interventions for persistent pelvic pain. Ongoing opioids can contribute to central sensitisation, which is a process by which persistent, or chronic, pain develops. They can also cause constipation from slowing of the peristaltic movements of the bowel, which may in fact contribute to your pelvic pain and discomfort. Opioids can be a useful rescue medication for an unexpected or severe flare, they are essential for surgical procedures and immediately in post anaesthetic care, but if you’re requiring them frequently post surgery, you may find their effectiveness wanes over time as your body requires a higher dose to achieve the same effect. If you’re still in severe pain, seek help, your quality of life matters and there are strategies that can help you.
You can keep track of your medications with the QENDO app, noting when you are needing more medication, or rescue medications during a pain flare. If you are requiring strong pain medication frequently, it may be a sign that your pain is poorly controlled and impacting your quality of life, and you should share this information with your healthcare team. It also allows you to keep track of changes to your medications and any side effects you may experience, data which you can feedback to your team, refining your treatment plan for the better.
Over the Counter Analgesia
Paracetamol
NSAIDs
Ibuprofen, diclofenac
Prescription NSAIDs
Ponstan (Can also be prescribed for heavy bleeding)
Naproxen (Short or Long Acting)
Opioid Analgesia (“Rescue Medications”)
Codeine
Tramadol
Tapentadol
Endone
Morphine
Medications for Chronic Pain
Tricyclic Antidepressants
Amitriptyline
Pregabalin (Lyrica)
Gabapentin
Medications for Co-Occurring Symptoms
Maxalt (for Migraines)
Ondansteron (Antiemetic)
Metoclopramide (Antiemetic)
Softeners and Laxatives (for Constipation)
Non-Pharmacological Pain Management
Non-pharmacological pain relief strategies can be just as effective as analgesic medication when used appropriately, with professional guidance, for the right type of pain. Non-pharmacological strategies may be more sustainable long term, and some may be preventative - helping to stop a flare from happening in the first place, or lessening the severity. Non-pharmacological strategies may be used alongside medications to improve their effectiveness and improve a patient’s quality of life.
A multidisciplinary approach may be helpful in finding which strategies work best for your symptoms, other professionals that may help include pelvic physiotherapists, dieticians and nutritionists, psychologists, exercise physiologists, osteopaths, acupuncturists, and naturopaths. As you recruit members of your care team, you can track the effect of any interventions with the QENDO app, and share this feedback with them so that they can better tailor your care. How do you track non-pharmacological interventions? Use the activities tab! You can log various therapy appointments and exercises here, and track alongside your symptoms to see how these interventions impact them. For example, track a new exercise program and see if you experience a reduction in pain, or increase in mental clarity. You can also add appointments to the calendar within the app, and add this to your device’s calendar - your app is like one big folder for all your chronic illness information, appointments, and history.
Examples of Non-Pharmacological Interventions
Heat Packs
Stretching
often assists to relieve pain caused by pelvic muscle spasm
TENS Machine
Transcutaneous electrical nerve stimulation, the machine delivers harmless electrical impulses via the skin. If pain signals can be blocked by interruption caused by the impulses, then the brain will receive fewer signals from the source of the pain, thus theoretically fooling the brain into thinking one is experiencing less pain. This is known as the gating theory. Many people find TENS helpful for mild to moderate pain
Exercise
Muscles like to move, gentle exercise like walking, swimming and yoga may be beneficial for relaxing pelvic and back muscles, resulting in reduced pain.
Can be positive for mental clarity and mood
Exercise physiologists and physiotherapists can help you to move in a way that is safe for you, tailored to your fitness levels, and avoids triggering pain flares.
Diet Changes
Some people find an anti-inflammatory diet or low FODMAP diet may help to reduce symptoms or severity of symptoms - depending on their diagnosis, location of disease, and symptom profile
Some foods may be triggers for inflammation and pain in an individual, you can track these patterns throughout your cycle using the app.
Work with a dietician or nutritionist for personalised advice that can help with specific symptoms, and to monitor the effects of changes in your diet. Working with a professional is essential to ensure any big changes support adequate nutrition
Psychology
Coping with pain can be difficult, especially if you’ve had a long road to diagnosis. Working through this with a mental health professional may be beneficial for you.
Stress and anxiety may exacerbate pain and lower pain tolerance. Chronic stress increases levels of the stress hormone cortisol, which may have an effect on pain and inflammation. If you find yourself dealing with anxiety and high levels of stress, learning positive coping mechanisms may benefit your mental health and have an effect on your ability to cope with and effectively manage your pain.
Endometriosis and adenomyosis are whole body illnesses, they are often difficult to manage, and patients may have had their symptoms dismissed for years, or even decades. The symptoms are NOT in your head, but the journey to diagnosis can certainly have an impact on your mental health. It’s okay not to be okay and to need mental health support.
Pain management can be an incredibly complex journey, with trial and error often a huge part of this journey. It’s important to know that there are options for dealing with pain that interferes with your everyday life. Endometriosis and adenomyosis does not necessarily mean that you will be in severe pain forever, there are health professionals who can help you, and resources available to gain your quality of life back. QENDO is here to support you on your journey.
Reach out to our community and utilise resources through
The QENDO App
Free QENDO Membership - Members Online Portal
24/7 Support Line
The EndoSister Program
Online regional support groups
Blog
Referral List
Learning space at qendo.org.au
References
Diggles, A. The role of physiotherapy in endometriosis. QENDO, 2018. https://www.qendo.org.au/blog/the-role-of-physiotherapy-in-endometriosis?rq=physio
Evans, S., & Bush, D. Pelvic pain and endometriosis.
Tronc, G. Endometriosis 101: For the significant other. Avia Publishing, 2020.
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