Understanding long-term (Chronic) Pelvic Pain

When you first develop pain, it is important to see your doctor to check that the pain isn’t due to something that needs medical treatment, or could be dangerous.

Unfortunately, even with the best care, some people still have pain. There may be nothing to find on scans or tests, but pain persists.

If this is your experience, you may have wondered why your body is so sensitive. Someone may have told you ‘it’s all in your head’ or you may have wondered if you are ‘going crazy’. You don’t need to worry that you are weak, or that the pain is imaginary. It’s real.

There are many differences between short term and long term pains.

Short term pain is the normal way our body tells us something is wrong and we should take action to protect ourselves. The pain you have when touching a hot pan, or pricking your finger with a pin tells you to protect yourself and move away. The pain you feel after an operation tells you to rest more and allow your body to heal. These are short term pains that usually go away over time.

Long term (chronic) pain is when pain doesn’t go away. The original cause of the pain may no longer be present. There is nothing that needs medical attention straight away and you are in no danger. Yet there is still pain. Tests may be normal and there may be no abnormality to see. Yet there is still pain.

Anyone who has pain of some kind on most days for more than three to six months is usually considered to have Chronic Pain. Other words used to describe this problem include Central Sensitisation or the Chronic Pain Condition or sometimes Neuropathic Pain. 

Once nerve pathways change the pain often becomes more complicated. In the beginning there may have been one type of pain. Now the pain is more complicated, with a mix of pain problems and often a sense of being tired and generally unwell.

No matter how your pain started, if you have had pain in the pelvis on most days for more than three to six months, then it is likely you have chronic pain. You may still have conditions in the pelvis that have not been fully treated, so sensitisation of pain pathways may not be your only problem, but is it likely that your pain pathways are part of the pain.

No one knows why some people develop chronic pain and others do not. Two people may have the same pelvic condition or injury; with one person recovering completely, while the other develops chronic pain. This is an area of research in many areas of medicine, not just pelvic pain, and it is hoped that more will be known about this over time.

It is possible that particular conditions, including endometriosis, may be particularly likely to result in chronic pain. It is also known that repeated episodes of severe pain (such as severe period pain every month) are more likely to lead to chronic pain than a single severe pain episode.

To understand long term, chronic pain, it is useful to think about how pain pathways work, and the effect of long term pain on our muscles, nerve pathways and emotions.

Our brain receives messages from all over our body all the time. Much of the information sent to the brain is unimportant, and we are never aware that the information has been collected. The brain filters this information and decides if it wants us to take action.

For example, parts of our brain are constantly collecting information on how much urine is in our bladder. The brain usually allows us to continue our normal activities and be unaware of our bladder until it is full. As the bladder fills, more and more messages are sent to the brain. When full, the brain makes us aware of the need to go to the toilet. If we don’t go the toilet and the bladder continues to fill, we will start feeling pain. Once the bladder is empty again, we are again allowed to continue our normal activities without noticing our bladder – until it becomes full again.

Different situations can affect how this system works.

If there is a painful bladder condition or bladder infection, then more pain messages than usual are sent to the brain and we feel the need to empty our bladder more often.

If we are anxious about our bladder function, then the brain focuses more on pain messages from the bladder and we also feel the need to empty our bladder more often.

Doctors often think of bloating as an inconvenience rather than a major problem. This is because bloating rarely means a serious illness. The trouble is that bloating can make you feel uncomfortable and unattractive. It also makes any other pelvic pain worse.

Bloating can make your abdomen swell up and look big. Women often feel like this near period time, but it can happen in women or men after eating certain foods. Bloating can also make your abdomen feel big, even if you look normal.This is often due to a change in the way nerves work causing abnormal sensations such as bloating, and sensitivity to touch. You may find your clothes uncomfortable or dislike anyone touching your abdomen.

Before you do anything about bloating, you should see your doctor. Sometimes women feel bloated because they have an ovarian cyst. Your doctor can check this for you.

Once your doctor is sure there is no serious disease present, there is lots you can do to feel better:

• A low FODMAP diet helps most people with bloating
• A low dose of amitriptyline (5-25mg daily) can help the nerves work normally
• Peppermint oil capsules taken 3-4 times daily or peppermint tea
• Iberogast liquid 20 drops from  a chemist, drunk in warm water as tea 2-3 times daily

You’ll find lots more information on FODMAP foods and a low FODMAP app at the following link:

www.med.monash.edu/cecs/gastro/fodmap

Muscles change when they are injured or when we are in pain – they tense up. Ever had a spasm in the back? – it sure stops you moving and bending! This is a normal protective reaction to prevent more damage to the inured part. Pelvic floor muscles behave like this too when there is something painful in the pelvis. They tighten up.

Muscles aren’t meant to be tight all the time and after a while, they start hurting and adding to the pain. Humans are designed to move, so sitting or lying down a lot due to pain can make the pain even worse. Muscles that become even tighter can spasm, causing sudden, stabbing or crampy pains.

When something painful happens to us, the nerves in that area send pain signals to the spinal cord and then up to our brain. It is when the brain notices the pain that we feel it.

With long term pain, the pain pathways from the pelvis to the brain change. This is called Central Sensitisation and once this happens, pain becomes more complex.

Things that were mildly painful become more painful. For example, intercourse may have been uncomfortable but is now painful.

Things that weren’t painful before become painful. For example, wearing tight jeans or your partners hand on your abdomen may feel unpleasant.

Pain can spread to a wider area. For example, the pain used to be in the lower abdomen but is now felt all over the abdomen, in the back and in the thighs. This does not mean that the back or thighs are abnormal. The pain impulses have spread in our spinal cord and brain and we feel pain in a larger area.

Pain can spread to other pelvic organs. For example, you may have had bad period pain or prostate pain before, but now also have an irritable bowel or overactive painful bladder.

Central sensitisation is also common after sporting injuries, shingles, or really any condition with long term pain. The pain that is felt long after a badly injured leg is amputated (Phantom Limb Pain) is another type of Central Sensitisation.

Thoughts and emotions can also affect pain. Feeling tense and anxious about family, work or relationships can make pain worse. Feeling under ‘stress’ from too many responsibilities and life events leads to tight tense muscles. For women with painful sex, just thinking about intercourse can be enough to make their pelvic floor muscles tighten without them realising. Guilt, worrying about the pain or relationship issues complicates things further. For men with an overactive bladder, just worrying about where a toilet will be when leaving the house can cause the pelvic floor muscles to tense and pain to worsen.

When pain becomes chronic our immune, endocrine and sympathetic nervous systems all get switched on to help us cope. The whole body gets involved. This may help in the short term, but when pain continues, these systems just don’t function well. And neither do we. Our energy levels, sleep, bowels, concentration, resistance to infection – and lots more – are affected and life becomes even more challenging.

It is common for anyone with chronic pain to have problems with poor sleep, fatigue, anxiety, low mood, nausea, sweating, dizziness or faint feelings.

Once pain has become chronic, it is unlikely that any one treatment will make it go away completely. However, you can feel positive about the future. There are many ways to manage this pain and make it a much smaller part of your life.

We all want a cure for pain, preferably one that is quick and easy. It’s understandable. One day there may well be such a treatment.

For now, the best treatment for chronic pain involves:

• learning more about your mix of pains – this site has information to get you started on each of your pains
• working with a physiotherapist who understands pelvic muscle pain to keep your body moving and muscles comfortable
• using medications for central sensitisation of nerve pathways, if appropriate – while minimising the use of regular narcotic (opioid) medications
• keeping active and involved in activities you enjoy – and learning positive ways to manage your pain

The pages on this site will help you with many of these things. Our Facebook page will help you keep up with new treatments and ideas. Our Events calendar includes activities you may be able to attend.

• Endometriosis and Pelvic Pain – Dr Susan Evans and Deborah Bush, QSM – A book for girls and women available from www.pelvicpain.org.au online shop
• Painful Yarns – Professor Lorimer Moseley (2004) – A selection of stories that help the understanding of Chronic Pain from any kind – available from Amazon.com.au
• Explain Pain – David Butler and Lorimer Moseley (2013) – Further explanation on Chronic Pain in general – available from www.noigroup.com
• Why do I hurt? – Adriaan Louw (2013) – available from Amazon.com.au