Managing Endo

Self-Management

It can be distressing to live with a chronic condition like endometriosis. The physical and emotional effects can be serious and far reaching and often affect family, friends, colleagues, relationships, education and career.

Managing endometriosis is not just about medical and surgical treatment, it’s about working with your health professionals and self-management that usually delivers best outcomes. Here’s a few helpful tips:

Coping

“Every day may not be good, but there is something good in everyday”

People cope with chronic or persistent pain differently as our emotional state influences our physical health.

Stress, anxiety and guilt can make pain worse.

When you are not able to do the things that previously brought you joy, you understandably grieve that loss. You may be able to address these difficulties on your own or with the help of those closest to you.

However, there are times when it’s best to get professional help to get things back on track, particularly when you consider you may have struggled with symptoms for a very long time. It is often difficult, even after successful surgery, to overcome the cycle of unwellness without help.
Review your health habits and determine where improvements can be made. Learn techniques for managing pain and stress and schedule time for fun and leisure activities.

Looking for some tips for coping with chronic pain? Check out this website released by the NSW Agency for Clinical Innovation.

Nutrition

People with endometriosis commonly experience the following bowel related symptoms:

  • diarrhoea with period
  • bloating
  • pain opening your bowels
  • fluctuations between constipation and diarrhoea
  • excessive or painful wind
  • bowel cramping
  • rectal pain and/or bleeding
  • lower back pain

You can relieve bowel related symptoms, by making changes to your diet. Conditions such as Crohns or Coeliac disease should be investigated too before making dietary changes or the diagnosis might be missed.

FODMAP’s™ (as they are commonly called) are a set of ‘difficult-to-digest carbohydrates found in wheat, milk, beans, soy, certain fruits, vegetables, nuts and sweeteners which are known to cause IBS’*.  People with endometriosis often have a sensitised bowel and FODMAP’s™ tend to be the irritants.

People with endometriosis are commonly sensitive to certain foods which can be disturbing, painful and disruptive. It is helpful to know which foods frequently make the bowel symptoms worse.

Begin taking notice of what you eat and keep a record.


Foods to watch out for are FODMAP™ FOODS:

  • Fermentable,

  • Oligosaccharides,

  • Disaccharides,

  • Monosaccharides

  • and

  • Polyols.


*ENZ acknowledges Sue Shepherd and Peter Gibson. Check out this website for more:  www.fodmap.com

Start taking note of what you’re eating, how much and how you feel after you eat it, as everyone is different. This will give you a really good idea of what foods you might be reacting to.

Other foods to watch out for…according to feedback we have had from women since the mid-1980s.

  • Animal fats – dairy, takeaways, fatty meats etc.
  • Alcohol – Wine and beer often pose problems for some people. This could be due to the preservatives (often sulphites) and the high yeast and sugar content.
  • Coffee – Caffeine, like alcohol, is also thought to impair fertility and is a diuretic. Try herbal teas and coffee substitutes for a change unless you have an irritable bladder.
  • Fizzy drinks – putting bubbles in a bubbly tum is not a good idea. If it’s a diet drink it contains sugar substitutes which are FODMAP’s™. These are also known to be carcinogenic.
  • Highly spiced food – this could be the spice but more commonly it’s probably the rich creamy sauce which might be causing your bowel grief.
  • Food combinations – pizza for example (dough base, coupled with processed foods).
  • Additives/preservatives – particularly sulphites. Look out for ‘E’ numbers (the numbers given to food additives) particularly, but not limited to, those in the 220 range.

Supplements

We don’t always absorb the nutrients we need from our daily food intake no matter how healthy our diet may be. Most of the food we eat today has been grown with the use of chemicals or processed in some way which can diminish the nutrient value. Many New Zealanders have mineral deficiencies such as selenium, zinc, magnesium, calcium and vitamins A, C and E to name a few. When a chronic problem like endometriosis is evident, the body is put under extra strain and needs help to function efficiently. Taking a dietary supplement may therefore be helpful to improve general wellbeing.

Always choose a quality product, follow the recommended course and seek expert advice from a dietary health professional.

Exercise

Physical Activity and Exercise is an essential aspect of non-drug treatment

Often when we experience pain and discomfort we avoid physical activity in an attempt not to cause pain flare ups.    However, whatever your age, health condition or pain symptoms there is strong scientific evidence that physical activity and exercise is essential to good health and general well-being for everyone.

The World Health Organisation (WHO) defines physical activity as any movement produced that requires energy expenditure – including activities undertaken while working, playing, carrying out household chores, travelling, and engaging in recreational pursuits.  Exercise is a subcategory of physical activity that is planned, structured, repetitive, and aims to improve or maintain one or more components of physical fitness.[1]


Some physical activity is better than doing none.

The NZ Ministry of Health has some wonderful resources on how to get started Getting Started Guide Ministry of Health   By becoming more active throughout the day in relatively simple ways people can quite easily achieve the recommended activity levels.   Once you have more confidence you can include more structured exercise sessions into your weekly routine.


Regular physical activity can help in symptom management.

It can ease back, muscle and joint pain, promotes better sleep, increases energy levels, boost self-esteem as well as reducing chronic pain, your risks of stress and developing many significant conditions and diseases including heart disease, type 2 diabetes, stroke, and some cancers. [2]


Exercise is an effective complimentary treatment to surgery and medication.

A multi-disciplinary approach (GP, Physiotherapist, Pain Specialist, Gynaecologist, Dietician and Exercise Professional) is always considered best practice in the treatment and management of endometriosis.

Exercise is also suggested for rehabilitation following surgery.  It is recommended that you receive advice and an exercise program from a physiotherapist or a registered exercise professional who understands endometriosis and pelvic pain.

Exercise should not worsen symptoms. 

It is important to start slowly when beginning an exercise program and avoid pushing into stronger pain. Exercise has a well-established part to play in a management plan for anyone with persistent pain however there is a right type of exercise and amount for each individual. Too often patients are told to go and exercise so do too much or the wrong type of exercise which increases their pain or symptoms and continues the cycle.

If you have had pain for more than 3-6 months you should expect the increase in the nerve signals to cause signs and symptoms to be worse with only minor triggers, last longer and things that would not normally cause pain will begin to trigger symptoms. If this is the case, then even simple small amounts of exercise can trigger pain and deterioration in symptoms. This in turn can lead to a fear of movement as seemingly minimal exercise has previously triggered pain. It is often useful to use a pain scale to monitor your pain levels, if your pain levels increases you should cease your session and seek advice from your multi-disciplinary team.


The Center for Young Women’s Health at the Boston Children’s Hospital[3] also suggests exercise can specifically benefit endometriosis symptoms and pain management.

  • Exercise improves circulation. Moderate exercise gets our heart pumping and improves the blood flow to our organs. This is important because our blood carries oxygen and nutrients to important body systems.
  • Exercise releases endorphins. When we exercise, our brain releases “feel good” chemicals called endorphins. These naturally occurring hormones work like pain relievers to lower pain. It only takes about ten minutes of moderate exercise (any exercise that makes you sweat or breathe hard) for your body to start making these chemicals.
  • Regular exercise lowers the amount of estrogen in the body. Since the goal of endometriosis treatment is to lower estrogen levels, regular exercise may help improve your symptoms.

Research continues to show that physical activity and exercise is an effective way to reverse the downward cycle of deconditioning and worsening pain, and gradually over time support those with chronic pain and symptoms to engage in activities and enjoyment of daily living. 

It is something YOU can do for YOU!

Information collated by: Deborah Bush
Peer reviewed by: Cate Grace and Leanne Wait

Complementary Therapies

Many people use various complementary treatments for healing and the management of pain relief. These include dietary supplements, nutritional changes, herbal treatments, visualisation, meditation, acupuncture, naturopathy and Chinese herbal medicine to name a few. Those who use these treatments often have a more holistic approach to health, healing and well being or use a combination of surgical / medical and natural remedies.  It is important to seek the advice of an experienced health practitioner.

Complementary and Alternative Medicines (CAM) are not generally considered to be part of conventional medicine and there are still key questions to be answered about whether the therapies are safe or effective.  Many people maintain such therapies improve or relieve their symptoms.  Here are some helpful remedies:

  • Massage is gentle and healing and releases tensions. Massage can allow the flow of more nutrients to areas in need of healing. There are many types of massage. For endometriosis, shiatsu massage, also known as acupressure, is probably the most relevant. Find a reputable practitioner.
  • Acupuncture was created in China thousands of years ago. Since then it has been known for its effectiveness in treating acute and chronic pain. Studies show that after acupuncture your body produces more natural painkillers, and your brain shows better response to pain medication. From acupuncture for endometriosis research we know that it may reduce inflammationmay modulate immunity and regulate your hormones.
  • Relaxation, meditation and visualisation are healing techniques which send positive energy to the mind and are very beneficial for those who live with chronic pain.
  • Naturopathy aims to support the body’s ability to heal itself through dietary and lifestyle changes and CAM therapies.
  • Traditional Chinese Medicine is a combination of practices to aid healing by restoring the yin-yang balance and the flow of energy.
  • Physiotherapy specialising in pelvic pain is being recognised as an integral part of managing pelvic pain.

The Consensus on Current Management of Endometriosis shares magnesium supplements and acupuncture as having some evidence to help pain from endometriosis and dysmenorrhea.

Sleeping Well

Just like a proper diet and regular exercise, a good night’s sleep is vital. Studies suggest that sleep deprivation results in hormonal and metabolic changes, inflammation, and increased levels of pain.

If you’re having trouble sleeping, try homeopathic sleep remedies, a cup of chamomile tea, or a spritz of diluted lavender oil on your pillow. If sleep deprivation becomes a problem, see your doctor. A referral to a sleep clinic may be recommended.

Simple rules for sleeping well:

  • Maintain a regular bed and wake time schedule
  • Establish a regular, relaxing bedtime routine such as soaking in the bath and then reading a book or listening to soothing music
  • Create a sleep-conducive environment that is dark, quiet, comfortable and cool
  • Sleep on a comfortable mattress and pillows
  • Take work materials, computers and televisions out of the sleeping environment
  • Finish eating at least two to three hours before going to bed
  • Exercise regularly. It is best to complete your workout at least a few hours before bedtime
  • Avoid nicotine, caffeine and alcohol before sleeping
  • Homeopathic remedies work for some
  • Try herbal remedies like camomile tea

If sleep continues to be a problem, see your doctor who may refer you to a sleep clinic.

Contact ENZ for more information on the treatment and management of endometriosis

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