to feel so bad again. If to be well means I can’t eat bread again, I can live without the bread. What I can’t live with is the pain. I now take supplements on and off. Occasionally I lapse with the food if I’m eating out, but generally it is easy, and the way I feel now I do not want to give up and go back to those dark days.
WHAT CAUSES PAIN AND INFLAMMATION?
Pain is caused by inflammation. This is a protective mechanism in the body which is a local response around an area of damage to prevent or delay the spread of infection. It happens at a site of injury from stress, chemicals, heat, bacteria or trauma. The first reaction is for the blood vessels to dilate in order to increase the flow of blood to the site of injury. This gives the red appearance and burning sensations (with endometriosis this seems nearer to boiling point), which we feel after a cut to the skin. The mast cells (large cells in connective tissue) release histamines and prostaglandins which cause the inflammation. Histamine is a compound formed from an amino acid histidine and is found in all tissues of the body. It causes dilation of blood vessels and contraction (tightening) of muscles.
Small capillaries (blood vessels) in the area become permeable and fluids leak into the spaces between the cells, causing fluid retention (oedema) and localized swelling which puts pressure on the nerve endings, increasing the pain. At the site of the wound, zinc and vitamins C and A are always found as they are required for collagen production in order to build healthy new skin. The blood at the site of the inflammatory response clots (this uses vitamin K) to seal off the area and prevent us from bleeding to death. Clotting also stops the infection or damage from spreading into other areas of the body.
If bacteria are involved, chemotaxic chemicals (those which are on watch for danger) call for the ‘immune army’. These include the blood cells called neutrophils, macrophages and lymphocytes which come to the injury site to fight the ‘alien’ danger. A pus-filled cavity may be formed, acting as a holding bay for dumping debris into, so that the white blood cells (macrophages) can come along and gobble it up.
With endometriosis much of the pain may be due to inflammation around the endometriotic implants. Once the immune army is called in and their chemical warfare begins, healthy tissue around the endometriosis may be bombarded with chemicals produced by immune cells – lymphokines, interleukins and interferons (see chapter 9 on the immune system). These white cells dump their chemical weapons onto the damaged tissues in an effort to remove the danger and to allow the body to heal the damage. The histamine release around the site also triggers more inflammation.
Other pain may be caused by adhesions between organs that pull and tug, leading to stabbing sensations. Yet more pain may be triggered as smooth muscle goes into spasm and cramp. With all three types of pain at the same time, the body becomes debilitated.
COPING WITH PAIN
Chronic pain is often frightening, debilitating and excruciating. When it subsides there is always a terror that it may return. Prolonged mild pain is totally fatiguing; it stops you from enjoying the normal things in life and leaves you feeling in despair. What do you do with pain? Do you go with it, fight against it or just learn to live with it? Fighting pain can be counter-productive as it causes us to tense up, when the best form of action is to try to relax. When we are relaxed the brain is able to produce endorphins, which are natural painkilling hormones.
We all have different ways of trying to cope with pain. When it goes on unabated for months on end, we take a battering. It is almost as if the psyche goes into hibernation in order to protect us. Getting through each day becomes a major achievement. Trying to find the energy to take a shower or prepare a meal can be exhausting and you may have to rest afterwards. It can be terrifying to be so ill and to discover there is no known cure. You either have to learn to live with it, which is not an option, or you have to take the bull by the horns and try everything which instinct tells you is right for you, at your own pace. Let this time become useful by reading and learning new things, making something good come out of the bad. That way positive things can happen. Not giving in to the illness, but turning it to your own advantage, stops it from ruling and ruining your life. Build on other skills you have developed over the years from hobbies or interests. With careful management on your part, you can take positive steps to regain your health. Apply the principles of relaxation, exercise and healthy eating.
Pain management treatment can be useful, but what works for one person may not work for another, so you need to persevere to find a strategy which works for you. Perhaps some of the following strategies may help you, as they have helped other women:
1 Gentle exercise
2 Acupuncture
3 Manipulation by an osteopath or chiropractor
4 Weight loss or improved nutrition
5 Hypnotherapy
6 Relaxation techniques
7 Counselling
8 Distracting hobbies or activities
9 Self-help support groups
10 TENS (transcutaneous electrical stimulation) machines from your GP. (These work best to reduce pain of medium intensity, such as period pain. They work for 10 per cent of patients and can help to reduce the need for medication.)
11 Medication
12 Surgery
The British Endometriosis Society (founded by Ailsa Irving in 1982) asked its members how they coped with pain. Ninety per cent of the women who responded used a wide variety of over-the-counter or prescribed painkillers. Many women used them constantly, although the majority took them only when the pain began to increase. Painkillers work more effectively if they are taken when the pain begins. Once extreme pain has taken hold, it becomes too intractable to shift. A few women took more than the recommended dose of painkiller, which can be very damaging to the liver and stomach. The women’s most common complaint was that no painkiller ever took the pain away completely; it was merely dulled. A few women had been taking antidepressants, some for several years. Non-steroidal anti-inflammatory drugs (NSAIDs) which may cause bleeding of the stomach lining; anti-spasmodics and analgesics were also mentioned. Some women drank alcohol with their painkillers, which is extremely dangerous.
DESCRIBING AND MEASURING PAIN
It is very important to find a general practitioner who will listen to your description of your level of pain and who will work with you to find the right type of painkiller. The chart shown in figure 4.1, drawn up by the American gynaecologist Arnold Kresch, may be used to show your GP the type of pain you suffer. Circle the words which closely describe your pain, to explain the type of symptoms which are present, and photocopy them for your doctor.
The diagram of three women (figure 4.2) which was also developed by Arnold Kresch, can be used to indicate where the pain is most severe. Write a 10 in the square where the pain is at its worst and radiate 9s around it. This way your GP can see exactly where the seat of the chronic pain lies, and this may help more effective painkilling drugs to be prescribed.
Taking control into your own hands can help you cope. Endometriosis is so difficult to explain to sceptical individuals who have the philosophy ‘Oh no, it’s a woman’s problem’, and anxiety often can arise when you are unable to describe how the pain is creating problems for you. Certainly doctors need to be made aware of just how your pain affects your everyday life. When you are in the full throes of pain at 4 a.m. it is vital for the doctor to see you then. It is no good waiting until the next day when you are in recovery and crawling along to the surgery. The doctor needs to see the full effect of the pain in order to treat it correctly. If a doctor is unavailable, call an ambulance or get a taxi to the local casualty department.
It is crucial that you have a doctor you can trust, who is compassionate and who listens to your needs. He or she should be a part of your healing team. If you are coerced into unnecessary treatments, trust is lost and, once trust is lost, trauma and anxiety can delay healing. Indeed, anxiety and tension can worsen pain.