Talking about Pelvic Pain
The following information is intended to help those with pain in the lower abdomen/pelvis to communicate about their pain with others. Getting the message across about how pelvic pain affects us is important for several reasons:
- It helps doctors to help us manage the pain
- It helps family and friends to understand how we feel
- It helps employers to know what our needs are
There may be greater tolerance of acute pain because it goes away. Pain that recurs or is constant is more wearing for the person affected and those in regular contact with them. Perhaps a little time spent communicating well could make things easier for those with long term pain and those around them. ( Hoffman 2001, Werner A 2003, Grace 2007, Skuladottir 2008)
There may be particular difficulties and issues linked with talking about lower abdominal and pelvic pain. Those with pain in this area sometimes say things like:" I was asked whether I've got back problems. I say yes because it's too embarrassing to explain what the real problem is". Perhaps using phrases such as "pain in the lower tummy","lower abdominal pain" or "pelvic pain" is less embarrassing, more acceptable and easier for people to cope with.
We can certainly explain how the pain affects us physically. If there are basic activities we are unable to do such as sitting, standing etc we should say so. People may respond with a question such as"is it your back"? Rather than replying "yes" what about saying "No, it's lower abdominal or pelvic pain"? If the listener is interested you may want to give a bit more information and describe it eg "It's stabbing like a knife" or "it's throbbing or aching". Most people can imagine what this may be like. This may make it easier for the listener to understand how the pain is affecting you physically.
Talking to health professionals
It is important to tell the person treating you:
- How severe the pain is on a scale of 0 -10 (zero is no pain and ten is the worst level of pain you can imagine). Click here for a guide to pain scales. Long term pain of more than 3 to 6 months duration (chronic pain) may require different scales of measurement
- Say how long the pain has been present
- Where the pain is
- Whether you have had a diagnosis in the past and what that was ( even if you don't agree with the diagnosis )
- What investigations you have had in the past
- Describe the pain in your own words eg burning, stabbing, etc
- What makes the pain worse and what eases the pain
- If there is a pattern to the pain - keeping a pain diary can be useful
- If the medication you are taking is not helping when you have given it a fair trial and taken it as prescribed. Don't continue taking medicines that are not helping. Some medications should be reduced gradually. Ask your doctor if and how you should go about this.
- You may find it helpful to write down what you want to say/use this pelvic pain questionnaire before and/or during a consultation. This includes basic activities and functions. For example,how long you are able to do an activity such as standing or sitting before having to rest.
Talking to family and friends
Those who are in pain all of the time will probably not want to keep talking about it. There can be many reasons for this including "not wanting to bore family and friends" or "not wanting to appear negative". Frequently those with long term pelvic pain look well. There are no external, visible signs of injury. Family and friends may find it difficult to understand the pain when there is no visible evidence. This can make it especially difficult for those in pain to ask for help. It is easy to forget that the person in pain may need help with daily activities. The following suggestions may help to ease some situations:
- Ask for help
- If sexual intercourse is painful professional help may be needed.
- Pain can cause anger and frustration for patients and those around them. It is important to discuss this and to try to solve problems before they escalate and become unmanageable. Pain can cause physical tension which can lead to emotional tension.
Talking to employers
Not all employers may be sympathetic
It is important that employers have an understanding of how long term pain affects us. There may be practical things that can be done to enable someone in pain to continue working, such as the use of specially adapted desks, chairs etc. Occupational therapists may be able to help with this. It may be possible for some work to be done at home when the person in pain can choose the time and the type of task they carry out. If you have flare ups, it may be possible to save up hours worked in advance when the pain is less,to make up for "bad days".Employers are required to make reasonable adjustments. Advice about this can be obtained here: www.equalityhumanrights.com. For those who belong to a union, a union representative can offer help and advice.
The following ideas may help:
- Are there any aids that would make things easier?
- Is there someone who can help you with pacing activities eg a physiotherapist?
- Can tasks be adapted to a location that makes it easier?
- Is it possible to work some extra time during "good times" to use during "flare ups"?
What benefits do self-help groups provide?
The first and most obvious benefit provided is that to the individual. When they first contact a group many people describe feeling a tremendous sense of relief: "I thought I was the only one in the world to feel this way or to be in this situation".
People benefit from participation in a self-help group in many different ways. Some of the most common benefits are:
- Reduced feelings of isolation and loneliness
- Being able to access relevant information and literature
- Having the opportunity to share experiences
- Being empowered to take an active role in their own health and wellbeing
- An increase in self-esteem
- An increase in self-confidence
- Having the opportunity to develop new skills
- A greatly increased social circle
- The opportunity to give as well as receive help
- Reduced feeling of stress, anxiety and fear
- Opportunities to talk to people who have "been there"
- Swapping and learning new and practical ways of dealing with problems
- Feeling more in control
- Being inspired and gaining support from others' experiences
- Receiving sympathy based on empathy
(With thanks to UKselfhelp for the above)
There is a moderated message board which those with abdominal and pelvic pain may find helpful as a source of support, help and advice through sharing their experience and knowledge.
Research is currently underway to investigate the way in which men and women describe pain. There may be differences which affect the reaction of the listener. A recent BBC radio 4 programme entitled "Gender differences in pain" BBC - Radio 4 Woman's Hour -Gender differences in pain
Issue date: February 2012
Reviewed: April 2015
Review date: April 2018