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.

Endometriosis and Nutrition

Unfortunately, there is no one-size-fits-all ‘endometriosis diet’; women with endometriosis require tailored nutrition advice for their specific symptoms. That said, we know endometriosis is an inflammatory oestrogen-driven disease, so we aim to reduce inflammation and circulating oestrogen levels. We do this by:

Choosing an anti-inflammatory style of food intake. A Mediterranean-style dietary intake includes:
  • Lots of fruit, vegetables, extra virgin olive oil, nuts, seeds, legumes (beans & lentils), wholegrain carbohydrates, some dairy products and lean animal proteins
  • Regularly eating oily fish and seafood (at least twice a week)
  • A high fibre intake (from fruit, vegetables and wholegrain carbohydrates) helps to lower levels of circulating oestrogen and keep bowel regular. Note that not all types of fibre are helpful for those with Irritable Bowel Syndrome(IBS); soluble fibre is a good choice to increase as this type of fibre is less bloating and works for both constipation and diarrhoea.
Limiting foods and drinks known to promote inflammation (may worsen pain and symptoms). These include:
  • High fat red meats and processed/preserved meats (e.g. bacon, ham, salami)
  • High sugar foods and drinks (fizzy drinks, juices, sweet tea drinks).
  • Highly processed snacks like chips, chocolate, snack bars, biscuits, bakery treats
  • Fast foods and deep fried foods
  • Foods high in saturated fat like butter, cream, ice cream, chocolate, meat fat/chicken skin, and coconut products (e.g. coconut cream, coconut yoghurt)
Caffeine may worsen gut symptoms, anxiety and bladder symptoms for some women with endometriosis

Alcohol is inflammatory and can cause an increase in circulating oestrogen (which can drive the growth of endometriosis). Alcohol can worsen gut symptoms too because it is a gut irritant.

Avoiding weight gain (unless you are underweight) and keeping active each day.

Body fat produces oestrogen, so extra body fat can potentially increase the growth of your endometriosis. Focus on building up your muscle and fitness rather than focusing on losing kilograms.

Endometriosis and Irritable Bowel Syndrome (IBS)

Many people with endometriosis experience gastrointestinal symptoms, often worse around menstruation. Common symptoms include:

  • 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
  • nausea

It is very common to have endometriosis and IBS together. However, it is important to rule out other causes of gut symptoms before making nutritional changes, such as being screened for Coeliac disease and inflammatory bowel disease (e.g. Crohn’s or Ulcerative Colitis). You may be able to improve bowel related symptoms by making changes to your food intake, such as a low FODMAP food trial.

FODMAPs and Gut Symptoms

If you have IBS type symptoms, a low FODMAP trial may be beneficial. FODMAPs are fermentable carbohydrates that can cause gas, bloating, and altered bowel habits in sensitive individuals. The low FODMAP trial was developed by Monash University for IBS but it also appears helpful for women with endometriosis-related bowel symptoms.

FODMAPs include:
  • Fermentable
  • Oligosaccharides – e.g., wheat, onion, garlic
  • Disaccharides – e.g., lactose in dairy products
  • Monosaccharides – e.g., excess fructose in apples, pears, honey
  • And
  • Polyols – e.g., sorbitol and mannitol in some fruits, vegetables, and sugar-free products (e.g. erythritol)

It is a good idea to consult a dietitian who is FODMAP accredited from Monash University for support and guidance while doing a low FODMAP trial. The Monash Uni Low FODMAP App is very useful and A Little Bit Yummy website is also a helpful resource with lots of recipes and information.

A low FODMAP trial involves 3 phases: an elimination phase, a reintroduction and food challenge phase, and a personalisation phase. It is very important not to just cut out all FODMAPs and stay low FODMAP long term; this is restrictive, unnecessary and leaves out many nutritious foods. Doing all 3 phases helps to identify your own personal gut symptom triggers while being able to reintroduce and enjoy all other foods.

Information provided by: Alice Gormack – NZ Registered Dietitian (BSc, PGDipDiet, MHSc)

Supplements

Eating a wide range of nutritious foods is the best way to get nutrients into your body. Having a condition that causes chronic pain increases the body’s physical stress (oxidative stress and inflammation). We need to eat anti-inflammatory antioxidant-rich foods to help reduce oxidative stress. However, many of our foods are processed in ways which can diminish the nutrient value. We can have low intakes of nutrients, despite usually getting plenty of calories.

Some women with endometriosis may require nutritional supplements to correct deficiencies, e.g. iron, vitamin D, B12, omega-3. It is useful to check for deficiencies by doing blood tests, before taking nutritional supplements, especially supplements with high doses of single nutrients. For example, many women with endometriosis have heavy periods which increases the risk of iron deficiency. Iron supplements may be required to restore normal body levels as you cannot correct iron deficiency from food intake alone.

It is generally considered safer to take a multivitamin and mineral supplement that contains smaller amounts of a wide range of vitamins and minerals (e.g. a Women’s Multi) than taking large doses of single nutrients (unless testing has shown deficiency).

Dosing yourself with extra vitamins and various nutrient supplements without the advice of a healthcare professional is not a good idea and could be harmful. Nutritional supplement requirements are individual and depend on your food intake, health conditions and even how often you spend time outside. It is recommended to have a qualified and registered nutrition professional support you in these choices.

To find a Dietitian or Registered Nutritionist go to:
NZ Dietetics Association https://www.dietitians.org.nz/ and Nutrition Society of NZ https://www.nutritionsociety.ac.nz/find-a-nutritionist

Information provided by: Alice Gormack – NZ Registered Dietitian (BSc, PGDipDiet, MHSc)

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.

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