Information for participants of pain management programmes: what are they? What do they cover? How to get on one? https://www.britishpainsociety.org/static/uploads/resources/files/book_pmp2013_participant.pdf 

Pain Concern provides information and support for pain sufferers, those who care for them and about them, free factsheets and leaflets to help you manage your pain. www.painconcern.org.uk

VIDEO: Understanding Pain in less than 5 minutes, and what to do about it! https://www.youtube.com/watch?v=C_3phB93rvI

VIDEO: Pain and Me: Tamar Pincus talks about chronic pain, acceptance and commitment. https://www.youtube.com/watch?v=ZUXPqphwp2U
 

VIDEO: Tame the beast: It’s time to rethink persistent pain. https://www.tamethebeast.org/#tame-the-beast

Free self-management courses providing tools and techniques to help you to take control of your health and manage your condition better on a daily basis. The majority of the courses are delivered by trained tutors who have experience of living with a long-term health condition. selfmanagementuk.org

Versus Arthritis: Two major UK arthritis charities have now joined forces to offer information on current research, treatments, developments, news and opportunities to get involved. https://www.versusarthritis.org/

BackCare is a registered charity that aims to reduce the burden of back pain by providing information and support, promoting good practice and funding research. The charity acts as the hub between patients, (healthcare) professionals, employers, policy makers, researchers and all others with an interest in back pain. www.backcare.org.uk

VIDEO: ‘Back pain – separating fact from fiction’. https://youtu.be/dlSQLUE4brQ

The Equality Act aims to prevent employers from discriminating on the grounds of long-term ill health or disability and to make reasonable adjustments to support people in work. https://www.equalityhumanrights.com/en/equality-act-2010/what-equality-act

Access to Work provides advice to employees and employers, assessing for equipment, environmental adaptations and support.
If you require additional advice with your employer you can contact:
• the Advisory, Conciliation and Arbitration Service ACAS on 0300 123 1100
• your trade union, if you are a member.

If you need support in getting  a job, you can find information here: https://www.gov.uk/looking-for-work-if-disabled

Fibromyalgia Association UK is a registered charity administered by unpaid volunteers. FMA UK was established in order to provide information and support to sufferers and their families. In addition, the Association provides medical information for professionals and operates a national helpline. www.fibromyalgia-associationuk.org

VIDEO from the BBC: Fibromyalgia: 'Like red hot lava radiating through my body': https://www.bbc.co.uk/news/topics/c2qlz4pepkmt/fibromyalgia

Many activities and exercise forms can support the longer-term wellbeing of people living with pain.

The Taoist Tai Chi Society of GB is a registered charity that teaches tai chi to the community to help people improve their health and wellbeing: www.taoist.org/uk

The University of the Third Age (U3A) are self-help, self-managed lifelong learning co-operatives for older people no longer in full time work, providing opportunities for their members to share learning experiences in a wide range of interest groups and to pursue learning not for qualifications, but for fun: www.u3a.org.uk

A Bristol-based Index of social groups and clubs in Bristol listed by interest group: https://www.bristolindex.co.uk/community/clubs.asp

Mindfulness based or informed approaches have become well known in the management of pain and other symptoms.

 
“Mindfulness means  ‘awareness’, yet surely when any of us are suffering from searing physical pain… we seem to be too aware of our suffering .

How on earth can learning to become even more aware possibly help?” (Mark Williams' foreword to Mindfulness for Health by Vidyamala Burch and Danny Penman).

The awareness we are cultivating in mindfulness is wise and kind.  We find this enables people to have increased awareness of how subtle processes of mind can turn up the volume on pain.  This body-mind approach sees the individual  as possessing the  resources they need to manage their health  and mindfulness supports the recognition and cultivation of these resources.

There are some links below to more information and practices you may wish to try. Please be aware that the increased awareness developed by these practices is not always easy and most people need support in using them to gain the most benefit.  The pain management service can support you in learning mindfulness as part of your self-management. 
The Frantic World the website of the finding peace and living well with health and illness: http://franticworld.com/   (Danny Penman, Mark Williams and Vidyamal Burch)

Some free mindfulness downloads: http://www.freemindfulness.org/download

https://www.mindful.org/meditation/mindfulness-getting-started/

The UK listing has qualified and accredited practitioners: https://www.ukmindfulnessnetwork.co.uk/uk-listing/
 

This list of books have been suggested by our patients and clinicians. There are many books available, and we have selected a few that we think are well-written and helpful. However, we also know that some people prefer different styles of writing and different approaches.
We have written a summary of each book to give you an idea of the content.
You should be able to request these books from your local library.

Overcoming chronic pain: A self help guide by using cognitive behavioural techniques by Frances Cole, Helen Macdonald, Catherine Carus, Hazel Howden – Leach.
Practical ways to improve sleep, relaxation, relationships, fitness and pacing of activities.

Manage your pain by Michael Nicholas, Alan Molloy, Lois Tonkin and Lee Beeston.
Easy to dip in and out of. All-round coverage of Pain Management methods, including an ordered approach to a pain management programme.

Coping Successfully with pain by Neville Shone.
Personal description of his chronic pain experiences including using the methods from a pain management programme to improve his life. A fairly easy read.

Living with fibromyalgia by Christine Craggs-Hilton 
An easy read with practical tips written in a caring way. Gives sensitive tips on how to cope physically, mentally and emotionally.

Painful Yarns by Lorimer Moseley.

Explains what message pain is sending you about your body. Practical stories explaining pain mechanisms in simple terms.

Fibromyalgia: Understanding and getting relief from pain that won’t go away. By Don L Goldenberg. 
Has a personal perspective. Works through some complex material in an easy to understand way. Does use some jargon.

Manage your mind by Gillian Butler and Tony Hope.
Self-help for low mood an anxiety. Several tools to try. Practical approaches to help solve common difficulties.

Living Well with Pain and Illness: The Mindful Way to Free Yourself from Suffering by Vidyamala Burch.
An inspiring and practical book. Good for anyone wishing to begin meditating and practicing mindfulness. Contains practical exercises.

The Mindful Way through Depression by Mark Williams, Jon Teasdale, Jon Kabat Zinn and Zindel Segal.
Free of Jargon. Offers everyday coping mechanisms that are easy to introduce.

On arrival you will be asked to complete a symptom questionnaire.

You will then see a member of the team to discuss these symptoms. You may be asked specific questions about your periods and sex life. The consultation will cover previous investigations and treatments you may have tried, and the effect of your symptoms on your day-to-day life.

Your gynaecologist may ask to examine your abdomen and pelvic area (this involves an internal examination), with the support of a nurse chaperone. There is always privacy to undress and dress. An ultrasound may be recommended; this is often completed transvaginally, via a thin probe inserted into the vagina.

The effect of endometriosis varies hugely between women. Individualised recommendations will then be discussed with you including the risks and benefits of each approach. You will have the opportunity to ask questions.

Below are examples of possible plans of care. One or more may take place in sequence or in parallel.

Further investigations may be suggested. This could include blood tests, vaginal swabs to look for infection, biopsies from the womb lining or an MRI (Magnetic Resonance Imaging) scan. More specialist tests may be necessary involving the bladder (e.g. cystoscopy) and/or bowel (e.g. sigmoidoscopy), meaning additional appointments having to be arranged.

Medical treatments for endometriosis may be offered. This can involve taking extra hormones or treatments that result in lower hormone levels.

Surgical investigation and treatment may be offered.

Mild to moderate endometriosis can sometimes be treated if discovered at the time of surgery.

Surgery for moderate and severe endometriosis may require a longer operation time, additional surgical support and different pre operative planning, in which case the endometriosis is often treated at a second procedure. This usually involves an overnight stay on our Cotswold ward.

When factors make endometriosis surgery complex or high risk, we discuss cases at our Endometriosis MDM. This is a full review of your history, examination findings and the results of any investigations (or previous surgery) with the whole team. We use this to ensure we are recommending the best plan of care and to discuss surgery if proposed.

This meeting also helps us review and guide improvements to our service.

Some women find it helpful to bring a family member, friend or partner along with them for support. You may find it useful to write down your symptoms or any questions you may have beforehand and take your notes along to the appointment with you.

Endometriosis is a chronic inflammatory condition driven by the hormones oestrogen and progesterone.

In women with endometriosis, cells similar to those of the womb lining (the endometrium) are found in other parts of the body, most commonly in the pelvis (e.g. on the lining of the wall of the pelvis, in the ovaries, fallopian tubes, bladder, bowel or ligaments supporting the womb). 

These cells undergo cyclical changes (related to the menstrual cycle), where patches of endometriosis thicken and shed but with no way for them to leave the body. This causes inflammation and scar tissue to form, which can lead to pain and discomfort.

Endometriosis is not an infection and it is not contagious. Endometriosis is not cancer.

Endometriosis affects as many as one in ten women of reproductive age, many of whom will have no symptoms. This is an estimated two million women in the UK. It can affect women from every social group and ethnicity.

• Pelvic pain which is cyclical (related to the menstrual cycle) or non-cyclical (unrelated)
• Excessive pain before/during/after periods
• Pain during sex
• Fertility problems
• Persistent tiredness
• Pain when urinating
• Abnormal bleeding
• Pain with bowel movements

Endometriosis can vary in severity. Some women experience few or no symptoms; other women suffer with many effects. It can affect many aspects of a woman’s life including her general physical health, emotional wellbeing and daily routine.

There are three types of endometriosis:

1. Ovarian endometriosis: This causes ovarian cysts called endometrioma. The cyst is filled with old blood and because of the colour, the cysts are often referred to as ‘chocolate cysts’.

2. Deep endometriosis: The nodules of endometriosis implant at least 5mm below the peritoneum. Structures affected can include the uterosacral ligaments (ligaments supporting the womb), bowel, bladder and ureters.

3. Superficial peritoneal endometriosis: The lesions involve the peritoneum, which is a thin film that cloaks the inner surfaces of the pelvis. The lesions are flat and shallow and do not invade into the spaces underlying the peritoneum.

Some patients have more than one type of disease present in their pelvis.

Endometriosis can be diagnosed by having a diagnostic laparoscopy (key hole surgery). This involves passing a thin telescope through a small cut in your umbilicus (navel). It is connected to a video camera and television so that the inside of the pelvis can be examined. This procedure requires a general anaesthetic.

Some types of endometriosis can be diagnosed through ultrasound or other imaging such as an MRI scan.

Endometriosis is treated by medical or surgical methods.

Medical therapies include:

1. Painkillers (paracetamol, ibuprofen)
2. Hormones such as the oral conceptive pill, Depo-Provera ™ injection, Nexplanon™ implant and Mirena™ coil or types that cause a temporary and false menopause state (Zoladex™)

Surgery involves removing the deposits. This is mostly completed laparoscopically