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4 Coping with the pain of endometriosis

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Nothing is too wonderful to be true, if it be consistent with the laws of nature.

Michael Faraday, Physicist

Pain is defined in the Concise Oxford Dictionary as ‘suffering, distress, of body or mind’. The Oxford American Dictionary defines it as ‘an unpleasant feeling caused by injury or disease of the body’. Endometriosis pain is dire, described by many as ‘exquisite’ because it takes over your life and colours your whole being, often leaving you stunned or unable to breathe. Pain is a signal that something is wrong within the body. Pain makes us adapt and do something to gain relief; it makes us react.

Chronic intractable pain, such as that from endometriosis, is exhausting. It saps our vitality and robs us of our pleasure in life. Doctors often diagnose and attempt to treat the cause of the pain, but they often fail to discuss the meaning of this pain so that we do not know what to expect in terms of our general well-being or our prospects for recovery. It is crucial that pain is taken seriously and not dismissed as being in the mind. Most women have great difficulty trying to explain to a sceptical doctor what is actually happening inside them. This adds to the anxiety, causing more tension and more pain.

Chronic pain is defined as ‘pain which lasts for longer than one month and cannot be relieved by conventional treatment methods’. With endometriosis the pain may be intermittent, but it is real and causes much unhappiness and anxiety. Sometimes it becomes so overwhelming that death would actually seem a welcome relief. When ovarian cysts burst, the pain can be so unreal, so breathtaking, one almost wonders how the body can survive it. Being kept awake night after night by extreme pain wears out the nerves and leaves the sufferer feeling frail and battered. Struggling through day after day of pain wears down the soul.

• CASE STUDY •

Jo R of London

I can happily say that over the past few months since seeing the nutritionist many of my symptoms have subsided and I can now carry on a normal life. I was getting all the typical endometriosis symptoms, the bloating, abdominal pain, heavy periods and bad indigestion. After being careful with the foods I eat and cutting out wheat and reducing dairy foods, it has made an amazing difference. The fatigue has gone and period pains are a thing of the past. Really at first it sounded that cutting out some foods would be hard, but once you feel the effects, it is easy to keep to as you never want 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.

Appendix C (pp) has a pain calendar for you to photocopy to chart your symptoms on a monthly basis. This will enable you to see if any patterns are repeated in each cycle.

What does your pain feel like?

Some of the words below describe your present pain. Circle ONLY those words that best describe it. Leave out any category that is not suitable. Use only a single word in each appropriate category – the one that best applies.


Figure 4.1

Laparoscopic appearance of endometriosis, vol 1, 2nd ed, Resurge Press, Memphis,TN,1991, pp. Reproduced with kind permission from Arnold J. Kresch, D C Martin, D B Redwine and H Reich.


Figure 4.2

Laparoscopic appearance of endometriosis, vol 1, 2nd ed, Resurge Press, Memphis, TN, 1991, pp. Reproduced with kind permission from Arnold J. Kresch, D C Martin, D B Redwine and H Reich.

COMPLEMENTARY THERAPIES

Over half the women in the survey had used complementary therapies to help control their pain. Nutritional supplements were used by the majority, with D,L-Phenylalanine (DLPA) being the most commonly used. Herbal medicines such as agnus castus, blue cohosh, raspberry leaves, slippery elm, violet leaves, peppermint and garlic oils were also mentioned. Homeopathic remedies had been used by some women and a qualified homeopathic practitioner can advise you on which remedy would be most appropriate for your symptoms. A variety of elixirs, such as camomile tea, raspberry leaf tea, arnica ointment, royal jelly, Bach Flower Rescue Remedy and Indian brandy, were suggested, and yet others used prayer and laying on of hands.

One-quarter of the women had used a combination of orthodox and complementary therapies. Winthrop, the pharmaceutical company, in their booklet Managing Danazol Patients by Richard P Dickey, PhD, MD (published by Winthrop in the USA), mention that irritability, nervousness, anxiety and emotional lability have been associated with a lack of vitamin B6. It also states that ‘pyridoxine (B6) given orally 25–30mg per day may help to prevent headaches and visual changes in some cases’. So it is recognized by one drug company that a mixture of therapies may help. (Chapter 6 discusses the use of the drug Danazol as a treatment for endometriosis.)

A favourite way to treat pain was to curl up with a hot water bottle. Various techniques, like visualization, reading, having a warm bath, self-hypnosis tapes, watching videos and listening to music, or knitting could be employed to try to relieve the milder pain. Some women likened the pain to giving birth, but with no end product, and used the breathing exercises they had been taught for labour pains. The majority of women surveyed felt that trying to do some regular gentle exercise, such as swimming, walks or yoga, helped them most. One woman beat her cushions; another found solace in playing her flute.

VISUALIZATION

Dr Bernie Siegel of Yale University has written books about visualization techniques, which involves making mental pictures. You can imagine the endometriosis is gradually shrinking away. The author used to visualize fluffy white baby goats grazing on the endometriotic implants, making them shrink in size, or imagined a blue healing flame licking all around them.

Positive thinking is vital as it helps the body to heal itself. In illness there are often inadequate T-cells (white blood cells which attack the invading tissue, bacteria or virus). Stress is known to lower the production of T cells and B cells in the body, which weakens the immune system’s response. Natural white blood cell production is known from research to be reduced by psychological factors. Sufferers of AIDS and cancers are seen to increase their white blood cell count overnight by visualization techniques.

However, it is the crisis which comes in the wee small hours which can be the most terrifying. The choice is between staying calm or panicking. Many women take extra painkillers or sleeping tablets. One woman reported, ‘I take painkillers which make me sick and then I pass out’ and another said, ‘The pain is so overwhelming, I daren’t even move and can’t concentrate on anything.’ Others moan the pain like a chant, or find that keeping warm is soothing. Yet others say their body just went into shock and shook uncontrollably; this is serious and a sign that the doctor should be called.

DEEP BREATHING

Steady deep breathing is very important, as hyperventilating (rapid and shallow breathing) can make pain worse. It interferes with the oxygen supply to cells which reduces their production of essential hormones, enzymes, energy and possibly endorphins. Hyperventilation means using the lungs to move more air in and out of the chest than it can deal with. Overbreathing is a reaction to pain and fright, but if it goes on too long, you can experience erratic heartbeats, dizziness, gut disturbances, pins and needles, muscle pain, clammy hands and a flushed face. Hyperventilation is caused by adrenaline pouring into the bloodstream, raising the heartrate, tensing the muscles and sharpening the senses so that we can escape from a potential danger. But if we are ill and in no danger, then hyperventilation begins to upset the acid/alkaline balance of the blood. Normal metabolism is altered, leading to exhaustion and depression. Hyperventilation was first described during the American Civil War, when soldiers were disabled by shortness of breath and irregular heartbeats. The trick to correct the breathing is ‘Lips together, jaw relaxed, breathing low and slow’. It will take practice to get this right but perseverance could help your health improve.1 Wearing warm, loose clothing and breathing deeply from the abdomen can make a difference to your pain.

SELF-HELP GROUPS AND POSITIVE THINKING

It helps to talk with someone who has endometriosis and understands your pain, which is why self-help groups can be so powerful in sharing different pain-reducing strategies. It is important to keep a hold on reality and allow yourself to be pampered a little. Allowing yourself to be ill and recognizing that you will get better helps to pull you through. It can be terrifying when the body goes out of control. We live in a world where we expect to be in control but, when nature takes over, it is very disconcerting. The body is always trying to heal itself and you can make a difference by the way you approach the treatment of pain. Settling into a comfortable position and staying still until the severe pain subsides is best. An occasional orthodox or herbal sleeping tablet to knock yourself out for the duration of the pain can also help.

Be positive about yourself, but allow yourself to grieve for the lost time. Your friends may be getting on with their lives and careers whilst you feel left behind. It is very important to know that the body can get well and that you just need to give it all the things it really needs in order to build itself up again. Persevere with your treatment strategies; when you have been ill for some time, the body needs time to heal, it will not happen overnight. It may take several months to totally heal, although some people feel much improved after a couple of weeks. We are all different.

At 4 a.m. when things look bleak and you feel very alone, remember that there are many women all over the world feeling the same at that very moment, and that you are not alone. Think of each other (mind meld) and pull each other through.

The treatment strategies chosen depends upon each person’s physical make-up, medical condition, their personality and other factors, such as where the pain is seated. We hope that some of our suggestions will be of help to you. Remember that anxiety, anger and guilt can make pain worse; they are negative emotions, so try to be positive. It has been known for over a century that our emotional state influences our physical health. There is a new field of study looking into the mind-brain-immune connections, psychoneuroimmunology. It is known that the activities of the white blood cells of the immune system are influenced by the brain and nervous system, as there are receptors on each which receive messages from the others. What we think and feel are likely to influence the way our immune cells respond.2 It is not understood how these areas influence each other and, as everyone is individual, it will differ from person to person. How we respond to the world and the pollution around us may affect our physical well-being. If we feel in control our bodies may cope better than if we feel out of control. Self-help is important because it makes us try to do something for ourselves and regain control over our health.

The two foes of human happiness are pain and boredom.

Arthur Schopenhauer, Philosopher

HOW TO COPE WITH CHRONIC PAIN

Some of the following ideas are suggested by the Chronic Pain Outreach Association in America:

1 Relax – listen to a relaxation tape or imagine a pleasant scene.

2 Do a distracting activity – reading, craftwork, etc.

3 Tell yourself that the pain is temporary and that it will pass.

4 Place a hot water bottle or bag of frozen peas on the pain site.

5 Make yourself laugh, watch a funny film.

6 Hold an involved conversation in your head.

7 Listen to your favourite music.

8 Try deep breathing or meditation.

9 Avoid stressful situations wherever possible.

10 Reduce tension by whatever means (even crying or shouting).

11 Notice the control that you do have (in whatever areas of your life).

12 Take a relaxing bath or shower.

13 Spend time in a very quiet room.

14 Use disassociation – become an ‘observer’ of your pain rather than feeling it as a ‘participant’.

15 Use visual imagery to transform your pain into something different – a shape or colour, for example.

16 Focus your attention on a part of your body which has a different sensation.

17 Ask for the support of others.

18 Adjust your activity level gradually. Increase towards normal activity level over 3–4 days.

NUTRITION TO REDUCE PAIN AND INFLAMMATION

• CASE STUDY •

Linda C of Surrey

After much trial and error I have changed my eating pattern to suit me, i.e. not combining foods and not eating foods that over a period of time have proved not to suit me (dairy, pastry, meats). I take vitamins and minerals every day and most of all I believe that a positive mental attitude to this condition has, along with the supplements, proved vital. I have had NO pain now for several years.

WHY CAN NUTRIENTS REDUCE PAIN?

Often diseases which are the result of vitamin deficiency are associated with unspecific pains. Changes in the central nervous system, and mucous membrane and skin inflammation are often highlighted in these conditions. While researching into endometriosis and nutrition, several research papers surfaced which showed that certain vitamins do possess analgesic (pain-relieving) and anti-inflammatory properties which correspond to those of orthodox medicines, but without the side effects. Pain is perceived as the body’s alarm signal, showing that all is not well. For instance, severe vitamin C deficiency causes scurvy, manifested by bleeding gums, and considerable pain in the joints. If the need for vitamin C is corrected, then the symptoms diminish. Vitamin C combats inflammation and pain by inhibiting the secretion of prostaglandins which contribute to the symptoms.3 Pain and inflammation which has its origin in a vitamin deficiency is best treated with that particular vitamin. Various other nutrients are known to play a role in relieving pain; these are the essential fatty acids from fats and natural cold-pressed oils, vitamins C, E and K and some of the B-complex vitamins, and D,L-Phenylalanine (DLPA), zinc, selenium and magnesium. If the body is subclinically deficient in certain combinations of vitamins and minerals, our responses to ‘normal’ pain could be heightened. By becoming optimally nourished we may be able to protect ourselves from the intensity of pain.

USE OF ANTI-INFLAMMATORY OILS OR FATTY ACIDS

Use of good quality natural oils may be a vital key to our disease. The choice of fats and oils used in cooking, for spreading and within pre-prepared foods, may have the most profound impact on our health and perception of pain. Most people know about saturated and polyunsaturated fats, but the key is the form in which they are found. Every cell membrane, all the steroid hormones and most brain cells depend upon oils (lipids) which our bodies process from the fatty foods we eat. In foods, oils can be found in two forms, cis oils and trans oils.

Cis fatty acids

In nature oil molecules are shaped rather like a horseshoe. This shape of molecule fits tightly with other phospholipids to form a strong cell membrane which protects the processes going on inside each cell. The membrane maintains the integrity of each cell and stops harmful chemicals from entering and damaging the powerhouses inside, which are working to produce proteins, prostaglandins, steroid hormones, enzymes and phospholipids. As these good quality cis oils make up almost one-third of brain tissue and every cell membrane, they are crucial to your state of health.

Your choice of these cis oils is therefore important. Look around your local healthfood shop for jars of extra virgin cold-pressed olive oils, organic butter and vegetable oils, such as sunflower, safflower and sesame, that are labelled ‘unrefined’, ‘unhydrogenated’ or ‘cold-pressed’. Cold-pressed olive oil and butter are fine for light, shallow frying. For salad dressings use a mixture of extra virgin olive oil and some cold-pressed, unrefined walnut oil. Oils in tins are best, as light causes oil to go rancid. Fresh nuts and seeds are also an excellent source of cis oils. A handful of nuts and seeds or a tablespoon of cis oils each day will help to balance your intake of good quality oils. They aid thyroid function and your metabolism. Used in moderation they do not make you fat. However, if you have poor digestion (heartburn, constipation or diarrhoea) (see chapter 10) or a poor diet to start with so that you are unable to absorb enough of the nutrients needed to metabolize these essential fatty acids, then the digestion must be corrected and a digestive enzyme taken with each meal (see here.).

Trans fatty acids

Trans fatty acids are found when oils have been processed, hydrogenated or refined. They are often found in biscuits, cakes, pastries and margarines. Most vegetable oils on supermarket shelves have been processed, and so contain trans oils, which are implicated in breast cancer formation. Women with high levels of trans fatty acids in body cells have about a 40 per cent higher risk of getting breast cancer.4, 5 When fats are processed, the molecule shape becomes more like a kink than a horseshoe. This fits loosely into the cell membrane, weakening it so that it is no longer effective at stopping harmful chemicals from entering the cell. This may damage the production of energy in the mitochondria and weaken defences against cancers. This may be why endometrial implants take hold.

Heat changes cis oils into trans oils, so deep frying is not advisable. You should avoid all oils which have been processed (hydrogenated), all oils which are rancid, and never use the same oil twice for frying. It is very important to read the label on oil jars and to buy only unhydrogenated, unrefined, cold-pressed oils. These are usually available only from your local healthfood store. It is in your best interest to avoid processed foods whenever possible, or to use convenience foods occasionally, but not every day. Being realistic, you will eat some trans fats, but try to keep them to a minimum.

Using and choosing good quality oils

There are three main fatty acids which the body uses:

 Linoleic acid – series 1 prostaglandins

 Arachidonic acid – series 2 prostaglandins

 Alpha-linolenic acid – series 3 prostaglandins.

Series 1 and 3 fatty acids have anti-inflammatory properties, and series 2 fatty acids can cause inflammation if not in balance with the other two. The body can make arachidonic acid from dairy products and the fat in meat, but it needs constant daily, fresh supplies of linoleic and alpha-linolenic acids from vegetable and fish oils as it cannot make series one and three vital fatty acids. If the daily diet is poor, the body supplies of these essential fatty acids will be extremely low.

• CASE STUDY •

Jane W J of Kent

I remember that the nutritional programme did make me feel much better. I still rely on the evening primrose oil. I really feel the difference in pain and PMT if I run out or forget to take it before a period. I take 1,000mg a day, upping it to 2,000mg a day in the immediate days before the period.

I conceived straightaway after the nutrition programme and, since then, my endometriosis has been in remission.

Essential fatty acids – the precursors to prostaglandins

Prostaglandins (PGs) are lipid (oil-based) hormones that have very important effects upon such body tissues as cell membranes in the reproductive system. The precursors to prostaglandins are the essential fatty acids (EFAs), arachidonic, linoleic acid and alpha-linolenic acid. Cis fatty acids should be the preferred source of oils in our diet.

The conversion of prostaglandins from EFAs depends upon enzymes, which are in turn nutrient dependent. If an excess of the wrong types of prostaglandins are produced by our tissues, this may lead to internal inflammation. Often the actions of one group of the PG system are in direct opposition to those of another.

There are three types of prostaglandins (see figures 4.3 and 4.4):

1 Series 1 prostaglandins are derived from vegetable oils and they have anti-inflammatory properties (linoleic acid).

2 Series 2 prostaglandins from dairy foods and fats within meat can cause inflammation to occur (arachidonic acid).

3 Series 3 prostaglandins are metabolized from fish and linseed oils and have anti-inflammatory properties (alpha-linolenic acid).


Figure 4.3

Metabolic pathway of the prostaglandin pathways for series 1 and series 2 prostaglandins.

Linoleic acid, which the body cannot make, comes from safflower, sunflower, hemp, soya bean, walnut, pumpkin seed, sesame seed and flax (linseed) oils. You need a fresh daily supply of this cold-pressed oil. Linoleic acid is the precursor of series 1 and series 2 prostaglandins. In your body, linoleic acid is changed, using nutrients, into gamma-linolenic acid (evening primrose oil). This is then changed again to dihomogamma-linolenic acid, which is the anti-inflammatory form, and also to arachidonic acid, which is proinflammatory. The vitamins and minerals which are required for their formation are listed.

The three different types of PGs need to be kept in balance (see figure 4.3), because they have a role in maintaining body homeostasis. (Homeo means same; stasis means standing still; homeostasis is the harmony within the body.) The body has an internal environment which has to be maintained within certain limits, for example, temperature control and the acid/alkaline balance, and it is constantly making adjustments to maintain this stable state. The body requires a rich mixture of gases, nutrients and water to control the temperature balance (here the thyroid gland in the neck is involved). It also needs fresh water to maintain health within cells. Health can deteriorate rapidly when this homeostatic balancing act is disturbed.

Thus, PGs possess both proinflammatory and anti-inflammatory properties. It has been suggested that more evidence ‘appears to indicate that PGs from series 1 conceivably dominantly have an anti-inflammatory property, whereas the series 2 PGs may have mainly pro-inflammatory qualities depending on their local concentrations’.6 Series 3 PGs are also anti-inflammatory. If you absorb enough linoleic and alpha-linolenic series 1 and 3 groups from good quality cis oils, you should be able to produce sufficient prostaglandin PGE1 which reduces the production of series 2 arachidonic acid (arachidonic triggers inflammation and pain in the body). Thus you can help to control internal inflammation just by eating the right sorts of oils. Evening primrose oil can be beneficial for some people; it tips the balance.

‘Only the natural horseshoe shape cis form of linoleic and linolenic acids are able to contribute to the formation of PGs.’7 Trans fatty acids which have been changed by chemical processing known as hydrogenation form a kink shape are not as effective in the formation of prostaglandins. Macrophages, often the predominant immune cells present during chronic inflammatory conditions, release PGs in response to inflammatory stimuli. In women with endometriosis the macrophage count is often higher than normal. If they release PGE2 more inflammation may occur (see chapter 9).

As an added bonus, PGE1 is able to stop blood cells becoming sticky; it can help to remove fluid from the body and can improve the functioning of nerves. It also has been shown to help immune cells in their work of clearing up cell debris in the abdominal cavity. These immune cells also need vitamin B6, iron and selenium.

Researchers think that an imbalance in the three different types of prostaglandins may be one of the causes of premenstrual syndrome and endometriosis pain. One piece of research shows that women with severe period pain, infertility and endometriosis had raised levels of prostaglandins series 2 (from arachidonic acid) in their peritoneal fluid, which could be the trigger for the inflammation.8, 9 Therefore making the effort to ensure these oils are balanced in the diet is a good practical step to take.

Daily oil intake

How can you assess the daily intake of good quality oils in your diet and improve it where necessary? If your diet is very low in the oils from fresh nuts, seeds, good quality cold-pressed oils and oily fish, and very high in dairy foods and fatty meats, then the series 2 prostaglandins will outweigh those from series 1 and 3. The result may be internal inflammation and pain. A change in your eating pattern may be able to reduce this effect. Standard prostaglandin inhibitors (such as Ibroprufen) reduce all three types of prostaglandin, thus stopping the beneficial anti-inflammatory ones from working effectively.


Figure 4.4

Metabolic pathway of the series 3 fatty acids down to prostaglandins.

Alpha-linolenic acid is found in flax seeds, hemp seeds, pumpkin seeds, dark-green leafy vegetables, soya bean, walnut and fish oils. The body cannot make this fatty acid so fresh supplies are required daily. Alpha-linolenic acid is the precursor of series 3 prostaglandins, which are anti-inflammatory. It is changed in the body to eicosapentaenoic acid (EPA). The enzymes require zinc, B6, magnesium and biotin to make series 3 prostaglandins. These are known to decrease blood pressure, reduce blood clotting, lower cholesterols and reduce internal inflammation. The vitamins and minerals involved in the process are listed.

Your body cannot take the steps to convert linoleic acid into gamma-linolenic acid (GLA) unless zinc, magnesium, vitamin B6, folic acid and biotin are absorbed from your diet. Vitamin C and calcium are then necessary for the final change into series 1 PGE1 and series 2 arachidonic acid. Evening primrose oil is very useful for some people as it bypasses the second stage of conversion, if the five nutrients are missing from the diet or being malabsorbed. Taken as a supplement, evening primrose oil can help to rebalance the three types of prostaglandins. The usual dose is four 500mg capsules per day. Too much stress, saturated animal fats, trans fatty acids and alcohol, can prevent the enzymes being able to change linoleic acid into a form the body can use to dampen down inflammation.

Practical steps you can take include:

1 Increase your intake of oily fish to twice a week.

2 Use one tablespoon of cis olive and walnut oils in, for example, salad dressing or soup once a day.

3 Reduce your intake of bovine dairy and red meat.

This helps to reduce the levels of arachidonic acid, which causes inflammation, while fish and nut/seed oils aid formation of the anti-inflammatory PGs. These good quality cis oils are essential in a well-balanced diet, and contrary to previous thought, they do not lead to an increase in weight. The fats which cause weight increase are the ‘bad’ saturated fats and trans fatty acids. The ‘good’ cis fatty acids aid body metabolism by supporting thyroid function. Researchers have observed that ‘the more linoleic acid in the fat tissue, the less obese the person’.10

• CASE STUDY •

Barbara G of Essex

My endometriosis and period pains and periods in general are much better since being on a yeast-free diet and taking nutritional supplements, including GLA. I also eat oily fish (herring and mackerel), fresh 3–4 times each week. You can’t beat fresh. Now I am recovered I will follow the same wholefood diet with a few extras such as a little bread. Efamol Marine has been extremely useful to me.

Fish oils

Fish oils are very important so long as they come from a reliable unpolluted source. Research on the effect of fish oils on endometriotic implants in rabbits with surgically induced endometriosis showed the sites of endometrial tissue shrank when the rabbits were fed fish oils: ‘Proinflammatory prostaglandins in the peritoneal fluid were significantly lower in the fish oil group versus the controls. Total endometriotic implant diameter eight weeks after induction was significantly smaller in the experimental group versus the controls.’11 The researchers concluded ‘that dietary supplementation with fish oils can decrease the peritoneal proinflammatory prostaglandin production and retard implant growth in animal models’. Studies on the use of fish oils in women with severe period pains showed that the fish oils were effective at reducing pain. If you are vegetarian, you can use fresh edible food grade linseeds each day; grind and eat them with breakfast cereal.

The metabolism of essential fatty acids in the body to form anti-inflammatory prostaglandins is crucial. Essential cis fatty acids from both fish oils and unrefined, unhydrogenated cis vegetable oils are able to alleviate pain and inflammation in the peritoneal cavity and joints if taken for a sustained period at the right dose. People with arthritis or pelvic inflammatory disease can benefit from dietary supplementation with evening primrose oil, linseed oil (edible food grade), borage, starflower oil and fish oils. Always buy cold-pressed capsules from a reputable source. Some of the cheaper tablets can be ineffective and a waste of money.

Best quality oils to choose (all fresh cold-pressed)
Flax (linseed)Pumpkin seedsSoya beans
FishWalnutsSeaweed
Sunflower seedsEvening primrose oilSesame seeds
AlmondsGame birdsHazelnuts
Cold-pressed oils in tins (e.g. extra virgin olive oil)
Reasonable oils
VenisonChickenMechanically cold-pressed oils in glass bottles
EggsRoasted fresh nuts and seeds
Organic butter in moderation
Oils to use in very small amounts
Bottled hydrogenated vegetable oilsDairy productsPork
Fried foodsLamb
BeefHydrogenated margarine
Butter

Table 4.1

The quality of oils.

Alcohol, sugars and refined starches all metabolize in the body to form fats which are stored in the body fat (adipose tissues). Fat cells produce oestrogen, which helps endometriosis to grow. Therefore, using only the good oils in moderation, and cutting out saturated and trans oils will help to control and normalize oestrogen production.

• CASE STUDY •

Jo R of Slough

Having suffered for years with extremely painful periods, mood swings, lethargy etc., I eventually sought complementary therapies. (After being diagnosed as having endo and being told that I needed a hysterectomy at 22 years of age.) Through cutting out all gluten foods, red meats and alcohol I found 110 per cent change for the better. Not only in my pain symptoms, but my monthly bleed would not be as heavy. My hair and nails became stronger and my overall health improved dramatically. Although I do feel the diet is difficult at times and slightly inconvenient, my whole attitude towards nutrition and health has changed. I think my mental health has improved too as I now feel stronger, more energetic and in control of my body. Thank you!

THE ROLE OF VITAMINS IN PAIN RELIEF

Vitamin C

Vitamin C, when combined with bioflavooids and digestive enzymes, has been shown in research to be more effective at reducing inflammation than non-steroidal anti-inflammatory drugs. An article about the research describes how ‘Animal model trials looked at histamine-induced wheals in the peritoneal cavity. When given vitamin C, with bioflavooids and digestive enzymes they reduced the effect of the histamine. It was felt that this was due to the nutrients strengthening cells against agents which were causing the inflammation’.12 Bioflavooids and vitamin C are known to have a beneficial effect upon immune cells. Vitamin C given to seriously ill cancer patients in a double blind controlled study showed that pain could be reduced significantly. Relief of pain using vitamin C has been shown in several other diseases. The way in which it works is not clear, but it may inhibit dopamine binding to membranes and inhibit prostaglandin levels. Low dietary levels of vitamin C in animal tests promoted the development of osteoarthritis. Relationships between vitamin E and vitamin C suggest that vitamin E may also be implicated in helping to reduce pain and inflammation. Together they thin blood, causing blood platelets to be less sticky. It has also been suggested that vitamin C ‘has the property of a natural antihistamine and it reduces the severity of histamine attacks from internal inflammation, and may be able to detoxify excess histamine produced when the body is under stress’.13

Vitamin E

Vitamin E has an analgesic effect because it is able to inhibit pro-inflammatory prostaglandin production. In the 1970s research showed that ‘300 iu per day reduced muscle cramps and pains in the lower back’.14 Studies also suggest that ‘vitamin E has anti-inflammatory action as it protects lysosome membranes (internal cell particles which produce enzymes) from histamine and serotonin damage. It acts slowly to limit inflammation so needs to be taken regularly’.15

B-complex vitamins

Some vitamins are used alone, but often their synergy means that when they are combined they are more powerful. B-complex vitamins (B1, B6 and B12), when working together, have also been shown by research to exhibit an anti-inflammatory effect combined with an analgesic action: ‘When vitamin B12 is taken with vitamin B1 and B6 they can together produce significant dose-dependent pain relief and inhibition of inflammation, comparable to the action of standard treatments in orthodox medicine, but without the side effects.’16 Vitamin K seems to strengthen these effects; it has an anti-inflammatory and analgesic effect in animal models.

It is known from research that high doses of thiamin (vitamin B1) can suppress pain transmission, studies suggesting that there ‘appears to be some relationship between thiamin and morphine’.17 Vitamin B6 (pyridoxine) also has analgesic effects. If B6 is deficient, the amount of serotonin in the brain decreases and this can lead to depression. B6 helps to relieve the pain associated with premenstrual syndrome. It should always be taken with other B-complex vitamins as they work synergistically. The best absorbed form of vitamin B6 is pyridoxal-5-phosphate, which acts as a coenzyme in transforming tryptophan into serotonin. (Serotonin is a neurotransmitter which exists in high concentrations in the hypothalamus, a major gland in the reproductive system – people with insufficient levels show signs of depression.)

‘Vitamin B12 was shown in three independent trials to have an analgesic effect when injected intramuscularly’18 and when combined with vitamins B1 and B6, they produce an even stronger therapeutic anti-inflammatory and analgesic effect.

• CASE STUDY •

Tina R of Sussex

Before starting the nutritional programme I suffered with excruciating painful periods, back pain, heavy bleeding, bloating, extreme fatigue and mood swings. The pain could be described as worse than being in labour. Conventional drugs were unsuccessful. I have now been on the diet for three months. Almost immediately I felt an improvement in my health. As well as following a healthy diet I try to avoid wheat and dairy foods which I have discovered result in bloating and cause more pain. My last period was lighter and almost pain-free. I no longer suffer with bloating caused by allergies and intolerances. I have an increased level of energy and a feeling of well-being, and I now have a ‘zest’ for life and it feels great. My health is of paramount importance and I know I shall always have to take care. Nutritional support and advice has been invaluable.

MINERALS AGAINST PAIN

Magnesium

Magnesium is known to be necessary to the relaxation of muscles. It works to produce adenosine triphosphate (ATP), which produces energy in each cell. Without magnesium we would be plagued with cramps, spasms and convulsions. An adult needs 450–600mg of magnesium per day to maintain health. Magnesium plays a vital role in synthesizing myelin around the nerves, without which they become sensitive to pain. (Myelin is the protective fatty deposit which coats and protects nerves.) Magnesium also has an anaesthetizing effect on the central nervous system; therefore adequate magnesium ‘is an important preventative against miscarriage and painful contractions of the uterus muscle’.19 Magnesium malate is the best form to help with muscle relaxation and chronic fatigue; magnesium taurate is good for mental exhaustion and control of oestradiol; and magnesium EAP2 is beneficial for the heart. Different forms of magnesium are available in healthfood shops and by mail order.

Endometriotic implants, by their very nature, attach themselves to cell membranes on smooth muscle, thus affecting the way muscles relax and contract – endometriosis is a disease that has an effect on smooth muscle function. Little research has been done into this penetration into muscle fibres. However, research teams in Denmark and the Netherlands are preparing to look into this area. Muscle cramps cause some of the extreme pain of endometriosis.

Zinc

Zinc sulphate was given to 24 patients with rheumatoid arthritis in one trial in Washington University, USA. It is known from research that zinc has anti-inflammatory effects in the knee joint. An article reports: ‘In a 12-week double blind trial using a placebo, patients taking zinc sulphate showed significant improvement for joint swelling and morning stiffness, and their personal impressions of their overall condition was high. Zinc is known to inhibit the immunologically induced histamine and leukotriene release from mast cells. Thus it can dampen down inflammation.’20 The good cis oils require zinc for the body to metabolize them to form anti-inflammatory prostaglandins.

AMINO ACIDS

D,L-Phenylalanine (DLPA)

D,L-Phenylalanine (DLPA) has been well researched and its potential to reduce chronic pain is well documented. Its effects can last for months, even after treatment ceases. Some people experience a marked relief from pain in the first few days of taking it, but others find that it can take up to three weeks before chronic pain dies down. Phenylalanine is a naturally occurring amino acid. In nature this amino acid is found as the ‘L’ form, and the mirror-image ‘D’ form is man-made, and when both the natural and man-made forms are combined they can relieve pain. DLPA also acts as an anti-depressant and an appetite suppressant. It should not be taken as a occasional painkiller; it must be taken consistently over a period of time. DLPA works in 60 per cent of people. If it has had no effect after taking it for three weeks, then it is probably not going to work for you. But when it does work, the results can be excellent.

How does DLPA work? When we are injured, our brain begins to produce endorphins, hormones with properties that mimic those of the most powerful analgesic drugs. They are the body’s own pain control system. For example, in people injured in road accidents, endorphins can prevent serious pain for several hours after the accident. DLPA works by reducing the levels of enzymes which normally break down endorphins, thus prolonging their effects in the body. The enzymes can also block the inflammatory effects of the proinflammatory prostaglandins.

Two DLPA tablets should be taken three times a day until the pain is reduced. The tablets can then gradually be reduced to a maintenance dose of one to two per day. The tablets should be taken 15 minutes before each meal if your blood pressure is normal (120/80mmHg or below), or 15 minutes after each meal if your blood pressure is high (140/90mmHg or above). Tablets are usually 375mg in strength combined with vitamins C and B6 to act in synergy. They are available on prescription from the NHS. Contraindications are pregnancy, breastfeeding, phenylketonuria, if you are taking monoamine oxidase (MAO) inhibitors as anti-depressants or if you suffer extreme hypertension (high blood pressure).

WHY DO NUTRIENTS HAVE THIS EFFECT UPON PAIN?

It is probable that nutrients activate certain enzymes and neurotransmitters involved with the perception of pain. Trying to achieve enzyme saturation point in all cells may be of benefit in promoting this anti-inflammatory and analgesic effect. (Saturation point occurs when the cells have the exact levels of vitamins, minerals and essential oils they need to work efficiently.) All enzymes use nutrients as co-factors in order to work effectively, so if the nutrient is in short supply, the pain control mechanism will not be able to work effectively.21

Vitamins can be seen as keys to metabolic pathways. The gate to each pathway within the body is shut unless that specific vitamin comes along with its key. All the enzyme and hormone reactions on the other side of the gate cannot take place unless that vitamin is present. If you eat well and your digestive system is able to absorb properly, you remain healthy. But if you ‘snatch and grab’ meals of dubious quality foodstuffs or you have a poor digestive system, then you may require supplementary nutrients to help you in the short term while your diet, digestion and absorption are improved.

USING NUTRIENTS TO CONTROL PAIN

• CASE STUDY •

Helena G of London

I would like to thank you for all your help. I have been keeping to my diet and taking the vitamins and minerals you prescribed for me. I must admit that I was sceptical at first about this kind of treatment, although I felt that it was worth a try since the treatment at hospital had not helped me at all. The diet did, however. It made me feel more positive as I felt that I had some kind of control over my health. Then, following the treatment for just over a month, I began to see a vast improvement. I felt more energetic and suffered less pain. Gradually over the second month I felt better than I had in years. Not only had the pain decreased greatly and the stomach upsets ceased, but I had greater concentration and did not feel as weak. My relationship with my family and friends, and especially my husband, has improved as I am no longer as quick-tempered, irritable and depressed as I had been. Also since following your treatment, I have not had to take any time off work, and have found it easier to deal with the stress of my job. I was sure that I would lose my job. Thank you.

Research into other conditions shows poor nutrition plays an important role in the development of other diseases and the sensible choice of good quality food could pay you dividends.22 We are all biochemically unique, therefore it is important for the individual to understand that what helps one person may not work in the same way for another. It has to be a trial and error approach. There are many treatments, orthodox and complementary, which others have found helpful. In chapter 11 (p), we will look at which supplements can be taken safely and why they may be required. In chapters 11, 12 and 14, we will discuss the type of healthy eating programme you could follow and which foodstuffs you should eat regularly.

SUPPLEMENT PROGRAMME TO COMBAT PAIN

We have seen how important individual nutrients are in controlling degrees of pain within the body; how essential fatty acids can reduce inflammation and how vitamin C reduces histamine release. By maintaining a steady supply of good nutrients from food the body should be able to mute pain responses. Supplements may assist for a time to improve the body’s fortitude. A selection of the following nutrients may help the body to cope with pain (see here.):

 Multivitamin/mineral

 D,L-Phenylalanine (DLPA)

 Essential fatty acids: omega-3 fish oils; omega-6 evening primrose oils (200mg per day)

 Magnesium malate

 Zinc citrate or amino acid chelate

 Selenium (non-yeast form)

 Vitamins A, C, E (antioxidants)

 Vitamins B1, B6, B12 (non-yeast form)

 Vitamin C with bioflavonoids and protein-digesting enzymes

 Proanthacyanadins

 Quercetin

 Resveratrol

SUMMARY

1 Regardless of what anyone tells you, the pain from endometriosis is REAL. Get your pain taken seriously. Try to reduce the pain symptoms through nutrition and use any method which helps to distract you whenever possible.

2 Photocopy and fill in the pain charts from Arnold Kresch and use them to teach your GP the extent of this very real pain. You can also chart your pain (see here.) and see how it changes over time.

3 Take painkillers early on to reduce pain. Once it takes hold it is much harder to control.

4 Exercising at a level with which you can cope helps to increase endorphin levels in the brain. These are the body’s natural painkillers. Do exercise such as gentle walks or pleasurable swims when you feel able, to build up endorphin levels.

5 Use relaxation and visualization techniques to aid your control of pain. Whatever works for you as an individual is the most important route to take. Feel comfortable about the techniques you try. If they feel wrong, stop using them.

6 Ask your GP or hospital for a TENS machine to try out.

7 Stay positive. You are going to beat this. At times when pain is overwhelming, this can feel nigh on impossible. Being positive helps to strengthen your immune cells to fight the endometriosis, which is essentially what is needed.

8 Let the time when you are incapacitated work for you. Use hobbies and skills you have acquired; you may be able to develop another career direction. Nurture your true friends. ‘A faithful friend is the medicine of life’ – Apocrypha 6:16.

9 Vitamins and minerals possess some analgesic and anti-inflammatory properties which may help combat pain. If you are very ill the effort of preparing and cooking food is almost impossible, but try to eat fresh nutritious food. As you begin to absorb the vitamins and minerals, the body can work more effectively to combat pain.

10 Vitamins C, E, K, A and B-complex, the minerals selenium, zinc and magnesium, amino acids and D,L-Phenylalanine, and evening primrose and fish oils all aid in the suppression of pain. Proanthacyanadins, found in blue and red berries, have strong anti-inflammatory and diuretic properties. Ensure that you are eating and digesting these nutrients and phytochemicals from foods in your diet. Remember that correcting the digestive tract is the first step. Consult a nutritionist for individualized advice.

Endometriosis: A Key to Healing Through Nutrition

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