What is endometriosis doing to me?

How to survive diagnosis and treatments and help the body to heal itself.

Endometriosis affects over one hundred and seventy-six million women worldwide and is more common than breast cancer and diabetes. Endometriosis is defined as the presence of endometrial-like-tissue (the normal womb lining tissue), but it is found outside of the uterus, literally inside the abdominal cavity. When this tissue bleeds with the menstrual cycle, this blood is trapped inside the tummy and it may trigger a chronic, inflammatory pain, as well as sub-fertility and reduced quality of life. Endometriosis is found mainly in women of reproductive age, from all ethnic and social groups (1). The profound loss of the ability to live a normal life can have a devastating effect on confidence and sense of self. The distress of sub-fertility can be exhausting month after month. The causes of endometriosis are as yet unknown, so the cure is elusive.

Between "8- 10 % of women in their reproductive years, and 20-50% of women with infertility have been diagnosed with endometriosis" (2). Approximately one fifth of the patients with sub-fertility problems may have endometriosis; it doubles the risk of premature birth.

Endometriosis is associated with severe dysmenorrhea (period pains), deep dysparunia (painful intercourse), chronic pelvic pain, ovulation pain, cyclical bowel or bladder associated symptoms with or without abnormal bleeding, subfertility, and chronic fatigue.

The pain level can be extreme if ovarian cysts burst. Some affected women however, remain asymptomatic - they may have the disease but they never have any pains (3). It is a conundrum!

In 2005 the All Party Parliamentary Group at the House of Commons (APPG) organized an on-line questionnaire, which was answered by 7500 women, all diagnosed with endometriosis, and showed that it took 5.11 years before a doctor would refer a woman complaining of period pain to a specialist gynaecologist. Overall it took an average of 9.11 years to get a complete diagnosis!. Altogether 82 per cent of the 7,500 women reported having to take 3-4 days off work each month, because of severe period pain. Twenty-five per cent of all sick-leave in the UK is due to women with period pain, yet still no-one takes it seriously. Luckily we do not have a disease which kills, just one which disables us at certain times during the month. So that is alright then?

The APPG is trying to encourage the setting up of Specialist Endometriosis Centres of Excellence, in the same way that specialist cancer centers work. We at the Endometriosis SHE Trust UK charity (www,shetrust.org.uk) feel that women need to be treated by gynaecologist's who specialise and are skilled at endometriosis operations, those who research and attend endometriosis conferences, keeping up to date with surgical techniques that conserve the organs. The womb and ovaries produce hormones that protect us from heart disease and strokes and diabetes, so organ conservation is very important when possible.

What causes endometriosis?

The endometrium, (the inside lining of the womb which rebuilds itself each month), sheds as a menstrual period in a cycle every 28 days. From day 1 to day 14 it is rebuilding itself ready for conception around day 15 when most women ovulate. The endometrium builds up each month in response to oestrogen. This womb-lining layer becomes nutrient rich ready to receive the embryo. As the period sheds, some of this blood may drip inside the abdomen via the Fallopian tubes. This womb lining may begin seeding itself into 'healthy' tissue inside the tummy over 4 hours, onto the bowel, bladder and ovaries - the reasons why are little understood. It should not be growing there, only inside the womb itself. As this tissue bleeds the blood gets trapped inside the tummy's fluids, setting up inflammation, pain and sub-fertility as it now contains chemicals which should not be there. Research reports that as that many as half of all menstruating women are affected by period pain, 10% have severe pain, which limits activities for three or four days each month (4).

Endometriosis is commonly found on the outside of the womb, ovaries, ligaments, bladder and bowel; large blood filled cysts may form on ovaries; adhesions stick organs together. Rarely it may grow on other organs, such as the lung, gums, kidneys, diaphragm, stomach, and liver.

The Four Key Symptoms of Endometriosis

  1. chronic/acute period pains
  2. ovulation pain
  3. pain on intercourse
  4. sub-fertility
  5. Other reported symptoms

  6. abdominal bloating, IBS
  7. bladder pressure, urgency, interstitial cystitis
  8. extreme fatigue
  9. ovary pains, lower back pains
  10. chronic bowel symptoms, rectal bleeding, IBS
  11. low body temperature
  12. recurrent infections, sore throats
  13. immune system failure
  14. hormone imbalances
  15. pains at all times
  16. low moods, anxiety

Small specks of endometriosis may cause enormous pain, yet huge lumps may give no pain, it is a conundrum.

Approaching your GP

Take a list of the main symptoms with you to show the doctor exactly what happens to you every month, (there is a symptom chart in the appendix which you can copy and take to the GP). Explaining what the pain is like is another factor. "It hurts here" is not really telling them anything useful. You need to explain what the pain is like, describe it in words such as - pinching, stabbing, wringing, dragging, searing, deep aches, burning, tearing, twinges, backache, left ovary or right ovary pains. Does this pain correspond to the time of the period or when you ovulate mid-cycle? Do your bowel habits change at periods and when you ovulate? Do you become constipated or have diarrhoea before, during or after the period? Is intercourse painful at these times? Do you have blood on the stools at a period, do you get cystitis like pains only at periods or ovulation? Explain it all, write it down and go through exactly what happens when, and how many days the pain lasts. Score the pain on a 0-10 scale. Keep a record on the symptom sheet we have provided as a diary. The doctor is more likely to take it seriously if you can show pain is happening with the period and at ovulation. Some women get pain every day, as I did. We are all different because the endometriosis implants choose to grow in different areas of our bodies. Mine were all around my left ovary and colon. Yours may be at the right hand side or on the diaphragm.

Tell them which painkillers you take and how many are needed to stop the pain, or do they not even touch the pain? Sometimes painkillers dull us but leave the pain alone and you just feel fuzzy but still in pain. Ask to be referred to a gynaecologist with specialist interest in endometriosis, be assertive but not aggressive. Then tell the specialist all the same points. If you are taking the oral contraceptive pill and painkillers at periods and that does not stop period pain then you must see a specialist. Having an ultra-sound scan may show cysts and if organs are misaligned, by being pulled by adhesions, However, scans do not show small spots of endometrioisis, only large lumps. The adhesions are formed from strands of sticky blood which is trapped inside the tummy. Some women have "kissing" ovaries which are pulled and stuck together by these adhesions. The ovarian cysts may get stuck to the bowel or bladder. It is no fun and we need a diagnosis. Getting a diagnosis is a great relief to know what is causing the pain and that it is not cancer.

Surgical and Medical Treatment of Endometriosis

Gold standard diagnosis is done by laser or micro surgery at a laparoscopy. Pharmaceutical treatments use the oral contraceptive pill to mimic pregnancy, GnRH analogues like Zoladex to mimic menopause, or use of the Mirena coil. This is because at pregnancy and menopause the growth of endometrial tissue stops as the oestrogen levels die down. Hysterectomy or removal of the ovaries may be done if the disease is very severe, but usually the rogue tissue is just lasered away at laparoscopy or cut out by micro-surgery. Conservation of reproductive organs should also be the gold standard. It would be bad practice to remove the womb and/or ovaries in women where they can be conserved by skilled surgery, where no cancer exists. Research does show that removal of organs does not bode well for long-term health. Medical ethics shows that the patient should be given full information so that she is able to make a proper decision of what happens to her body.

Oxidative stress

Two studies have found a positive association between oxidative stress and endometriosis (5). Reactive oxygen species in the body may affect the growth of endometrial tissue. These ROS molecules can damage cell membranes so that the endometriosis can attach and grow. The presence of endometriosis increases oxidative stress and depletion of antioxidants may contribute to excessive growth of endometrial cells (6). Significantly, lower levels of vitamin E were found in the peritoneal fluid than in plasma, suggesting that the peritoneal (abdominal) cavity has less antioxidant protection than serum, so the fluid containing the endometriosis might be more susceptible to oxidative stress than serum (7). Antioxidant nutrients like selenium, vitamins A, C and E may be supportive, plus proanthacyanadin in berries have an antioxidant effects. Women with endometriosis have lower antioxidant intakes of vitamin C, vitamin E, selenium and zinc and as endometriosis severity intensifies, an even lower intake of antioxidants is present. (8). Mopping up these free radicals is crucial, so eating foods rich in anti-oxidant nutrients is very important, so eating lots of lovely fresh fruit and vegetables will help this process.

Progesterone Resistance

Progesterone resistance is seen to be common in women with endometriosis. This is when oestrogen and progesterone become out of balance, particularly when oestradiol is not changed properly in the liver into the safer form of oestrone. Women with endometriosis often show low levels of endometrial receptivity, that is resistance of the endometrium to the effects of progesterone at certain times during the menstrual cycle. This is because there are low levels of a certain enzyme.

Progesterone levels are able to rise 30 fold over the space of half an hour, so are difficult to measure accurately. Day 21 is the normal reading for progesterone, taken to show ovulation has occurred. Low progesterone levels do indicate abnormal endometrium is present, and although it does not seem to effect endometrial thickness, it does affect the quality and ability of the endometrium to hold onto the embryo as it tries to implant. Progesterone precursors are magnesium, zinc, vitamin A and D, vitamin B6 and amino acids and essential fatty acids; maybe these nutrients are deficient or poorly absorbed in women with poor levels of progesterone.

Progesterone is produced naturally in the ovary, inside the corpus luteum, (known as the golden body). After the egg has been released from the follicle it seals up and fills with a golden liquid and this produces the progesterone. Progesterone is needed by the body as it causes the endometrium to shed once a month; it acts as an anti-depressant by calming the nervous system and balancing copper and zinc levels; it protects breast tissue and helps prevent breast cancer; it acts as a natural diuretic and aids thyroid action; it helps body fat to be used as energy and normalizes blood sugar control; it stimulates bone growth - and it 's effects are needed for a normal menstrual period.

It may be that with all the oestrogenic chemicals we eat and drink - this fine balance is broken. We need to bring progesterone back into balance again, and that means choosing to eat the best quality fresh foods we can get. Eating much less red meat and dairy foods seems to be important to keep oestrogen levels lower, eating organic when possible, so as to avoid all the oestrogenic pesticides in our foods (dioxins or PCB, Pthalates and Bisphenol A plasticisers). Keep a low intake of oestrogenic foods like soya and wheat, citrus and excess folic acid, Korean ginseng, and avoid herbs like black cohosh, dong quai and red clover.

Vitex Agnus castus is a herb that can help to balance oestrogen and progesterone taken over three to six months, but must be stopped as soon as you know you are pregnant. No hormone influencing herbs should be taken whilst on the OCP or HRT or the GnRH analogues as they have affects which would disrupt each other, as would high levels of vitamin C and E and linseed oil. All supplements should be stopped five days before any operation.

Oestrogen Dominance

Endometriosis develops in the presence of excessive oestrogen. Research found that 79 per cent of a group of monkeys developed endometriosis after having been exposed to dioxins in their food. The severity of endometriosis found in the monkeys was directly related to the amount of TCDD (2,3,7,8-tetrachlorodibenzo- p-dioxin - the most toxic type of dioxin) to which they had been exposed. They showed immune abnormalities similar to those observed in women with endometriosis. TCDD has an oestrogenic effect in the body. 'In Belgium the incidence of endometriosis, in women presenting at clinics with infertility, is 60-80 per cent and TCDD concentrations in the breast milk are the highest in the world (WHO 1992)'. More infertile women with endometriosis had detectable high TCDD levels in serum than the fertile women tested without the disease. Women with endometriosis should avoid fatty foods that may be high in PCB and dioxins to reduce their exposure (9).  Unless organic food is consumed oestrogenic pesticides are found in plant and animal foods, as they adhere to the fat molecules. Always peel if vegetables are not organic, we can't always afford to buy them often nowadays.

The body's clearance system for oestrogen, cholesterol and toxins is the liver. The steroid hormones are broken down in the liver after which they no longer have much hormonal effect. They are then bound to soluble fibre within the bowel so that they can be safely excreted. This is a key to our management of endometriosis, getting the bad oestrogen out of the body effectively. Eating some fibre every day is a key point.

Oestrogen has profound effects in the body and on the menstrual cycle. It causes the womb lining to thicken and can prolong menstruation time. It stimulates the nervous system causing copper levels to increase and zinc to decrease, and it stimulates high corticosteroid levels. In excess it acts as an abortive. It stimulates breast tissue and has been linked to breast cancer when unopposed at high levels. High oestrogen reduces thyroxine hormone and may produce a hypothyroid state in the body when you become tired, constipated, hair falling out and mentally sluggish. That sounds just like endometriosis doesn't it. Oestrogen excess causes body fat deposits to increase and impairs blood sugar control, leading to weight gain, as when on the OCP. The nutrients that have oestrogenic activity are copper, calcium and folic acid, with high levels of vitamin C and E and some essential fatty acids, such as linseed oil. As with all nutrition, moderation seems to be the key.

Diets high in saturated fat are seen to increase concentrations of serum oestrogen (10). Other research showed that women who eat meat once a day are up to twice as likely to have endometriosis compared to those who eat less red meat and more fruit and vegetables (11). Studies have shown that women with the highest intake of red meat increase their risk of endometriosis by between 80 and 100 per cent, while those with the highest intake of fresh fruit and vegetables lowered their risk of endometriosis by about 40 per cent. So reducing consumption of foods that are high in saturated fats and replacing them with fruit and vegetables such as broccoli, cauliflower and cabbage which contain indoles (compounds that help to break oestrogen down effectively), appears to improve oestrogen metabolism.

Women in Japan have the highest levels of endometriosis in the world. It is felt that this may be due to the high levels of oestrogenic chemicals, the dioxins, PCB's and phthalaytes in their diet. It may also be due to the high levels of phyto-oestrogens in the diet from soya and the low levels of fresh vegetables, as most are pickled in Japan. The birth rate in Japan is the lowest in the world. In fact there is a population clock ticking away in Tokyo showing the number of births and deaths and the shrinking population figures. Research at Cinncinnatti and Auckland zoo's showed that the wild cat breeding programmes did not work when the animals ate a high level of soya protein in the diet. When two-thirds was exchanged for chicken the animals fell pregnant naturally. We also know that high levels of peas in the diets of Tibetan men reduce fertility, due to the phyto-oestrogens. Eat pulses in moderation and not to excess.

"Dietary fibre increases excretion of excess oestrogen from the body. Some fibres such as the lignins found in rye, and seeds are changed by gut flora to form anti-oestrogen compounds, which are protective against cancers" (12). Avoiding the bad saturated animal fats and trans oils, and eating cold-pressed cis oils is vital. Soluble fibre binds to the oestrogen and inhibits their re-absorption. "Good quality fibre encourages a hormone known as Sex-Hormone-Binding-Globulin. SHBG is a unique transport system for oestrogen. Whilst oestrogen is bound to the SHBG it cannot exert any biological effect within the body" (13). If fibre intake is low then the oestrogen can have a biological effect, triggering the endometriosis implants to grow. A vegetarian, low-fat diet reduced period pain and increased SHBG (14). Bifido bacteria encourage oestrogen clearance by inhibiting an enzyme known as beta glucoronidase. This enzyme, when high, encourages the deactivated safe oestrogen to become reactivated so that it can be sent back into circulation (not a good idea with endo). What you chose to eat can have profound effects on your health it seems.

The best vegetables to eat are those from the cruciferous family, all rich in B complex vitamins and magnesium, such as cabbage, sprouts, broccoli, cauliflower, kale, turnip, swede, radish, horseradish, mustard and cress." These contain three unique compounds - indoles, dithiolthiones and isothiocynates, which influence enzymes that rev up the body's degradation system...oestrogen is 'metabolised' and ultimately excreted from the body" (15). Grandmas are always right when they say 'eat up your greens'! To help your ovaries and uterus work effectively make sure that you eat at least four portions of vegetables every day.

How to Reduce Pain

Pain can reduce the normal quality of life. Research showed that women with severe pain, infertility, and endometriosis had raised levels of PGE2 pro-inflammatory prostaglandins (from arachidonic acid) in their peritoneal fluid; this is the trigger for the inflammation (16). Inability to ovulate is clinically called 'luteinized unruptured follicle syndrome' or LUF. In the LUF syndrome, women will have the normal sequence of endocrine events and a normal menstrual period but their ovary will not release the egg. Non-steroidal anti-inflammatory drugs, NSAIDS, appear to trigger LUF, research has shown. In women with LUF syndrome, steroid hormone concentrations in the peritoneal fluid are much lower after the ovulatory cycle. It is felt that this may facilitate the development of endometriosis(17). If you are in pain but trying to fall pregnant then avoid NSAIDs and ask your GP for a different type of painkiller, like a wheat-free paracetamol.

Some nutrients play a role in relieving pain, the essential fatty acids from fats and natural cold pressed oils, vitamin C, E, K, and some of the B vitamins, DLPA, zinc, selenium and magnesium. Only the natural horseshoe shape cis-form of linoleic and alpha-linolenic fatty acids are able to contribute to the formation of anti-inflammatory prostaglandins, which reduce pain (18). Research looking at the effects of fish oils on endometrial implants showed positive results in that the sites of endometrial tissue shrank when fish oils were fed to rabbits with surgically induced endometriosis (19). Pro-inflammatory prostaglandins PGE2 (those which cause inflammation) in the peritoneal fluid were significantly lower in the fish oil group versus the controls. Total endometriotic implants diameter eight weeks after the start was significantly smaller in the experimental group versus the controls. Studies, looking at the use of omega 3 fish oils in subjects with severe menstrual pain showed that they were effective at reducing pain (20). Magnesium is also known for its relaxing effects on muscle tissue and can help with dysmenorrhoea and lower back pain (21). Vitamin E can help reduce painful cramps and also reduce blood loss. (22).

Vitamin B6 (pyrodixine) can have analgesic effects. If B6 is deficient the amount of serotonin in the brain decreases and this can lead to depression. B6 may help to relieve the pain associated with premenstrual syndrome. Vitamin B12 was shown in three independent trials to have an analgesic effect when injected intramuscularly (23). When vitamin B12 is taken with vitamin B1 and B6, they can together produce significant pain relief and reduce inflammation, comparable to the action of standard pain relief, but without the side effects (24).

It is known from research that high doses of thiamine (B1) can suppress pain transmission. There appears to be some relationship between thiamine (B1) and morphine (25). A dose of 100mg vitamin B1 was given for 3 months to 556 girls with period pain and 87 per cent felt completely cured and 8 per cent relieved; 5 per cent showed no effect (26). The use of (yeast-free) B vitamins seems to be crucial for women with endometriosis as regular use of multivitamin supplements may decrease the risk of ovulatory infertility (27). The conclusion being that a multi-vitamin-mineral supplement will increase fertility by supporting ovulation.

Foods to eat for good health

  1. Reduce the amount of bovine dairy foods and red meats you eat, which reduces your fat intake, and keeps oestrogen lower.
  2. Eat organic foods or peel your fruit and vegetables to remove pesticide residues. .
  3. Eat deep sea fish in preference to farmed, (avoid polluted marlin, swordfish)..
  4. Cook from fresh when possible, simple but nutrient-rich dishes. .
  5. Use organic butter and extra-virgin cold pressed olive oil. .
  6. Eat wild game, oily and white fish, nuts, seeds, berries, fresh fruits and green-red-pulse-root vegetables. Eat rainbow meals..
  7. Avoid foods like caffeine, alcohol, cigarettes, and refined sugar, which can lessen your intake of the good nutrients. .
  8. Exercise helps to reduce oestrogen, so walk, swim, do yoga, Pilates etc. A BMI between 21 and 25 is best for fertility. .
  9. Are any foods upsetting your digestion? If you suspect one food then exclude it for one month. If that makes a difference to the way you feel then get an allergy test done by your GP when you are eating it again. .
  10. Variety is the spice of life! Try to eat many different foods each day then you take in more nutrients..

Have boxes of organic foods delivered to your door. www.soilassociation.org - www.riverford.co.uk - www.abelandcole.com, www.organicdelivery.co.uk

Nutritional Supplements

The careful choice of nutritional supplements whilst the diet is being corrected may improve reproductive health. Harvard University and the American Dietetics Association both advise that a multi-vitamin-mineral should be taken each day (28). Research at the University of Leeds suggests that women taking a multi-vitamin capsule every day may double their chance of getting pregnant, as it is felt that better quality ova are produced by the ovary.(29).

Choose supplements that are hypoallergenic, yeast, wheat gluten, lactose, sugar and dairy-free. Consult a doctor before you try to get pregnant. Evening primrose oil should not be taken by anyone prone to epilepsy. Seek advice from a nutritional therapist.
Multi Vitamin Mineral capsule (Containing only 2000iu vitamin A)
Magnesium citrate 200mg
Bioacidophilus 16 billion viable organisms
Pesticide free omega 3 fish oil 1000mg -
Optional extras:-
Slippery elm 300mg - to soothe and heal the gut membrane
Chromium polynicotinate 100ug - to balance blood sugar
Zinc citrate 20mg - immune support
Cold pressed Omega 6 Evening primrose oil 1000mg

Endometriosis Case History

Mary's periods began when she was 12 years old; they were always heavy and painful, so bad that at night she had to sleep on towels. She was eventually diagnosed with polycystic ovaries at 25 years of age. By then she was plagued by severe back pains at periods and was unable to sleep. Two years later another laparoscopy was done but it showed nothing. The pain was so bad she was unable to work. She sought a second opinion. A year later another operation showed a large lump of endometriosis inside the bowel. She was placed on pseudo-menopause drugs for 6 months to stop periods and shrink the lump. After 6 months it was still there so a bowel operation was undertaken to remove it. Two years later the symptoms returned with bleeding from the bowel, so another bowel operation was done to remove a section of the bowel and the endometriosis lump which was now the size of a golf ball. After the operation she was so ill she could not get out of bed and a third bowel operation was done with a blood transfusion.

She and her husband wanted to have a family but the doctors said that this was unlikely from the state of the endometriosis and her bowel. Mary was very ill and could not work or do much in a day. She read my book and came to see me. We obviously had to work on the GI tract first so we looked for imbalance in gut flora and food intolerances. We used the anti-inflammatory omega 3 oils and probiotics. We excluded wheat-based foods from the diet for one month. When reintroduced it caused bloating and periods became more painful. A gluten sensitivity blood test was positive so now wheat products are avoided. Hair mineral analysis showed high copper levels so we used zinc to chelate the copper. We used anti-oxidants to reduce the inflammation and improved the diet to include cooked vegetables, as raw ones caused problems. Stewed fruits and fish were accepted. Slowly but surely the bowel began to function normally again and we were able to introduce more foods. After a few months Mary fell pregnant and gave birth to a baby girl. Two years later I worked with her again and she has just given birth to a baby boy. Now Mary is very careful with her diet. Her periods are fine unless she eats the wrong foods.

At The Endometriosis and Fertility Clinic we work with the Medical Research Council's medical audit, Measure Yourself Medical Outcome Profile Clinical Audit Questionnaire. It is used with all the patients for evidence-based-research-data to present at conferences. This was developed to show the efficacy of complementary therapies. In a recent EFC research trial looking at the MYMOP data on 198 women with diagnosed endometriosis the selected participants who reported sub-fertility had a 52.5 per cent success rate in falling pregnant; and 86 per cent reported pain reduction, and 26 per cent of the group who had not reported fertility problems fell pregnant. Some of these women had failed IVF, so we can see that dietary choices are very important for fertility.

Over the rest of the book we will look in detail at what we need to do in each of these areas to help ourselves to reduce the symptoms which are causing us grief.

References

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