Alternative ways of managing pain associated with endometriosis

Introduction

This patient information leaflet provides some advice on alternative ways of managing your endometriosis pain.

Endometriosis-associated pain is complicated. As you may be aware, there is no relationship between the amount or location of the disease and the amount or type of pain experienced. This is also true in other chronic pain conditions, such as lower back pain.

We know that various factors can contribute to the experience of pain. Some factors known to have a role in chronic pelvic pain are shown in the diagram below. Whilst endometriosis is important, the presence of one or more of the other factors may explain why treatment just targeting the endometriosis (for example, hormones or surgery) isn’t always successful at removing all the pain.

The management of endometriosis is multifactorial and should be focused on an individual. In the clinic we tend to focus on hormonal treatments and surgical options. However, you might be surprised how helpful some of these suggestions can be and you may even decide that some of them are strategies you wish to continue with. These strategies can be used alone or alongside hormonal or surgical treatments for endometriosis.

The nervous system

Over time, our nerves can become more sensitive to pain which is known as ‘central sensitisation’. Painful periods over many years may contribute to central sensitisation. Things that used to be only mildly painful can become very painful. Even non-painful experiences, like clothing or a duvet resting on the skin, can become painful or the nervous system may generate a painful signal without a trigger. People can be more sensitive to various experiences including bright lights and loud noises. You can think of this as turning up the volume of the pain-sensing system. This type of pain is difficult to treat; it doesn’t respond to painkillers traditionally prescribed for endometriosis-associated pain and needs to be approached differently.

If none of the other strategies described here are helping, or your pain feels like nerve-related pain (burning, tingling, electric-shock like), then it might be worth considering whether a trial of a drug targeting nerve pain (known as neuropathic pain) might be a good idea. These drugs are not licensed for endometriosis-associated pain and have never been tested for this reason, however they are licensed for neuropathic pain and are used in a variety of other chronic pain conditions including fibromyalgia, so your GP will be familiar with them. Possible drugs to consider are:

• Gabapentin
• Pregabalin
• Duloxetine
• Amitriptyline

Your GP will be able to discuss the risks and benefits of these and advise you on which could suit you best. Occasionally GPs may want this recommendation to come from the specialist team in the hospital in the first instance.

Communication between bladder-bowel-womb

Bladder and bowel symptoms are common in women with endometriosis even if they do not have endometriosis on their bladder or bowel. This is because the same nerves supply the womb, bowel, bladder and the top of the vagina. Discomfort in one organ may result in discomfort in other areas over time (known as ‘crosstalk’). We also know that bladder and bowel symptoms can be dependent on diet and that bowel symptoms particularly are worsened during stress or anxiety.

Things you could think about to improve this include:

• Taking care of your diet. A healthy, balanced diet may help minimise endometriosis pain and associated bowel symptoms.
• Avoiding too much comfort food/alcohol. Comfort foods like chocolate, cake and alcohol can impact on bowel function and women with sensitive bladders for whatever reason will often describe their pain as being worsened by alcohol.
• Staying well hydrated. Not drinking enough fluid as you are out of your routine, or don’t feel so thirsty because of a change in your activity levels can lead to constipation and to more concentrated urine which can irritate your bowels and bladder respectively.
• Trying to reduce stress and anxiety. Whilst we understand how difficult this is, it is likely to have benefit for your bowel function particularly as well as your pain in general. We offer some suggestions for how to go about this in the section on “emotional well-being and managing stress”.

The musculoskeletal system

Muscles, joints and other tissues can very commonly be involved in chronic endometriosis-associated pain. We often see these become dysfunctional and then begin to create problems of their own. Some examples of this are:

• The pelvic floor muscles become tense and painful which can cause pain during intercourse and/or bladder and bowel issues.
• The back joints can become stiff which can cause pain when sitting or standing.
• The pelvic joints can become irritated causing pain on walking and rolling over.

Reduced activity levels can increase musculoskeletal pain, and regular exercise can be very beneficial. Activities you can consider are:

• Making sure you get outside for some daily exercise. If long walks flare your pain, then this can just be a slow, gentle walk or bike ride. However, the benefits of being outside for your mental health as well as your physical health are huge.
• Making time within your day to do some gentle “pelvis friendly” exercises at home. You may already have a routine that was given to you by a physiotherapist or personal trainer, in which case please continue with this. If not, please ask for our pelvic physiotherapy handout.
• Keeping an eye on your diet and your weight. Constipation is likely to worsen any pain from your pelvic floor, whilst carrying excess weight puts a strain on muscles, which if they are already weak can cause or exacerbate pain.

Emotional wellbeing and managing stress

Living with chronic pain is incredibly difficult. It is likely to have a big impact on how you think, feel and what you feel/are able to do. The experience of constant/repeated pain episodes is stressful and can make it difficult to relax. Here are some suggestions for how you can look after your emotional well-being:

Taking care of yourself

It is especially important to consider how we can best take care of ourselves during unsettling and stressful times. You might be experiencing additional challenges for a number of reasons, including worries about accessing/delays in medical or surgical treatment. In additional, stress and disturbed sleep may exacerbate pain or reduce confidence in how to cope, and loss of routine.

Tips and strategies for taking care of yourself

Establish a routine

Build in a range of activities into your life so that your time does not feel taken over by worries.

Each day try to tick off a few from this list:

• Being active/exercise
• Contact with others (friends/family)
• Pleasurable activity
• Time to relax
• Do something fun
• Give yourself a challenge (for example do a puzzle)

Limit exposure to ‘threat’ information

Thoughts and worries about managing endometriosis such as due to post-pandemic delays will inevitably affect how we are thinking and feeling. Limit the amount of time you spend looking up health information. Try to have some conversations or some allocated time which is ‘threat’ free.

Taking in the good

Negative events are like Velcro, positives are like Teflon: we notice and remember negative information more easily (for example we notice/remember what went wrong in our day, not what went well). We may need to take some steps to balance our inbuilt negative attention bias by focusing on some of the good in our lives. For example:

• At the end of the day, see if you can think of ten things you appreciate (for example the smile from a stranger, the smell of your coffee).
• Make time for pleasurable experiences and give them your full attention. You can do this for brief experiences (for example the feel of the sun on your skin) as well as longer ones (for example watch your favourite film).
• Do something kind – call a friend, make a cup of tea for someone, smile at someone.

Look after your body

Try to eat healthily and regularly. If your appetite is low, eat little and often, choosing things you find easy to eat. Take a bath or a long shower. Try to keep active.

Living with uncertainty

It is common to find uncertainty difficult to live with, but sometimes our need for certainty can end up adding to our problems. For example, we might find ourselves going over and over things in our mind, feeling more stressed or frustrated, but the situation stays the same. Sometimes, no matter how hard we try to solve a problem, there is nothing we can do to change the situation or resolve the issue. Learning to accept situations we can’t change may sometimes be the most helpful thing to do. A helpful question to ask yourself is: Is this a worry I can do something about? If the answer is ‘no’, try these steps for accepting uncertainty:

• Be aware – What do you notice yourself thinking and feeling when the need for certainty comes up?
• Don’t respond – What can you tell yourself to help you not respond? (for example these feelings will pass)
• Let go – What can you do to help you let go of the need for certainty? (for example I can’t fix/change this)
• Focus on the present – See the grounding techniques below.
• Deal with a wandering mind – Notice when your mind wanders, perhaps automatically getting caught up in worry repeatedly. Each time, gently bring your attention back to the present moment.

Acknowledging and naming emotions

Acknowledging and naming the emotion, either to ourselves or talking with someone else, can be helpful. Research shows this can help to give perspective and to calm emotions. For example, you could say to yourself “I notice I am feeling overwhelmed”, or “I can see that I am feeling irritable”. Keeping a diary might be helpful.

Grounding techniques

When overwhelmed with emotion we can feel lost and disconnected from the present moment: our ability to think clearly and rationally may go ‘off-line’. Grounding techniques are a way of helping us to feel a little steadier and manage strong emotions, helping us connect with the present moment – the here and now. They can be quick strategies (like taking five mindful breaths) or longer, more formal exercises (like mindfulness meditation or yoga). Different strategies work for different people, and there is no “wrong” way to ground yourself. The main aim is to keep your mind and body connected and working together. Some ideas include:

• Come into your senses – stop, notice five things you can see, close your eyes and notice five things you can hear, and then notice five points of contact between your body and something else. Breathe. Then open your eyes.
• Take five breaths, paying full attention to the sensations of the breath.
• Focus on sensations in your feet as you walk from one place to another.
• Get outside – notice nature around you if you can access this. Feel the air on your skin.

Sleep

Sleep is incredibly important. We know that poor quality or insufficient sleep makes it difficult to cope with things that you would normally manage well. There is also increasing evidence that sleep deprivation can amplify pain, such that sensations that were previously only mildly painful become more severe. Even if your sleep is not disrupted by pain, it can be difficult to get off to sleep. Here are some top tips for getting your sleep back on track:

• Routine: establish a relaxing bedtime routine and give yourself longer to wind down at bedtime (up to 90 minutes can be helpful).
• Keep bed for sleep (if you can): if you spend time in bed reading, watching TV or working, your body/mind may not associate bed with sleep. It’s important to create a strong link between bed and sleep by avoiding using the bed for other activities.
• Rise time: if you haven’t slept well, it can be tempting to have a lie-in to catch up. Unfortunately, this will likely decrease the likelihood of a good night’s sleep the following night because you won’t have been awake long enough to build up ‘sleep pressure’ across the day. Set a regular rise time and see if you can stick to it. It might be hard work in the short term, but it will improve your chances of falling asleep each night. To help with getting out of bed at your rise time, plan some things to help get you going, perhaps a lively piece of music, a nice breakfast or a shower.
• Napping: if you can, it is best to avoid napping as it can lead to disrupted sleep at night. The longer we are awake, the greater the ‘sleep pressure’ will be at night. If you need to nap, try to keep it short (20 minutes) and earlier in the day to allow sleep pressure to build up again.
• Avoid stimulants before bed (caffeine, alcohol, nicotine).
• Natural light: natural light suppresses the production of melatonin (a hormone associated with sleep). Try to avoid bright light before bedtime to promote melatonin production. It is also helpful to expose yourself tolots of natural daylight when it’s time to be awake (particularly early morning). This will help you to feel awake, alert and ready for the day.
• Screens/blue light: avoid screens for an hour (or more) before bed as the blue light can suppress melatonin production.
• Relaxation/mindfulness: do a relaxation or mindfulness exercise (for example look on the internet for progressive muscle relaxation or a mindfulness body scan, making sure not to this close to bedtime) to help your mind and body wind down and get ready for sleep.

If you can’t sleep, try not to worry about your sleep and see it as a time for rest – the more you worry, the less you will sleep. Try a relaxation exercise or mundane mental activity (for example counting down from 100 in 7’s; remember the details of a walk you know well).

MyChart

We would encourage you to sign up for MyChart. This is the electronic patient portal at Cambridge University Hospitals that enables patients to securely access parts of their health record held within the hospital’s electronic patient record system (Epic). It is available via your home computer or mobile device

More information is available on our website: MyChart

Contacts/further information

Cambridge Endometriosis Endoscopic Surgery Unit (CEES-U)

Email CEES-U

Monday - Friday 08:00 - 17:00

Due to high volumes of emails and correspondence, there may be a delay in a response but we endeavour to get back to you as soon as possible.