Quality of life document

Enhancing quality of life in women and girls with endometriosis-related pain when traditional treatments have failed

Bergqvist IA*, Hummelshoj L, Hægerstam G, Ogeus B, Mills DS, Blomberg S, Moen MH, Bruse C, Hahn L Savonlinna, 11-12 July 2000

Introduction

This article was prepared by an international group of gynaecologists, pain specialists, nutritionists, and women with endometriosis with a special interest in improving the quality of life of those with recurrent painful endometriosis. This group met to conduct a workshop arranged on behalf of the Karolinska Institute and endorsed by ESHRE, and the consensus statement is a result of this collaboration. In reaching the conclusions outlined in this paper, the group discussed the cultural and neurophysiological aspects of pain and critically evaluated non-traditional therapies, which may be used in pain reduction and quality of life enhancement, when traditional treatments have failed.

Background

The workshop was conceived because it was felt that at meetings and congresses an increasing focus has been on dosage of drugs and the technical aspects of surgery, despite studies indicating that both medical and surgical treatments appear to have limited long term effects. Overall there is no favoured treatment of choice for endometriosis, nor a reliable diagnostic procedure to predict treatment outcome. Thus it seems relevant to consider additional ways in which the woman with endometriosis can be treated in a holistic manner, and also how endometriosis affects her overall quality of life.

Symptomatology

Of 4,000 women with endometriosis1 96 percent responded that they had pain. 95 percent had pain at the time of the menstrual period, 83 percent experienced pain at ovulation, and 75 percent reported pain at other times also. Fatigue was the second most common symptom at 87 percent, followed by 85 percent suffering with diarrhoea/painful bowel movements at the time of menstruation. 41 percent reported sub-fertility. These symptoms are experienced by varying degrees of severity, however 79 percent still reported that they were at times unable to carry out day-to-day activities, and a third had between 1-2 days off each month due to endometriosis. Not only do these factors have socio-economic implications, they also affect quality of life.

What is pain?

Pain is a physiological phenomenon that emanates from anatomical structures (nociceptive pain, neurogenic pain, etc). However, pain perception is influenced by expectations, social vulnerability, existential crisis, earlier experiences, environment and cultural background, and also by the consequences of the painful event. Once the pain is understood, and the different types of pain has been recognised, it can be handled in a number of different ways. If a treatment is expected to be effective, the therapeutic response may be impressive. Nonetheless, with the pain successfully reduced, quality of life does not necessarily improve.

Quality of life

Quality of life cannot be defined for a group of people. It is very individual with different influencing factors. Overall, there still appears to be a discrepancy between what the patients feel/explain and what the physicians see/hears – this factor may reinforce the reduction of quality of life. And whilst pain is very much a factor of quality of life, the experience, expectance of, and expression of pain is still individual.

* To whom correspondence should be addressed at: Department of OBGYN, Karolinska Institutet, Huddinge University Hospital, S-141 86 Stockholm, Sweden.

Controlling pain and disease emotionally

Many women become so accustomed to being sick, that even when the disease has been removed, and the pain has disappeared, they do not feel that their quality of life has improved2. The pain may have caused the woman to feel that she has lost control, because the pain controlled what she could do, and subsequently the pain becomes emotional. Belief is the first thing to leave the system, and physical and psychological trauma contributes to a negative self-image and negative internal dialogue. Counselling post-surgery, or during a treatment period with drugs, may be appropriate in these instances.

Controlling pain and disease nutritionally

Eating is something we do every day, and the vitamins and minerals we obtain from our food plays a vital role in our health and the body’s ability to heal. There are numerous micronutrients, which are essential to life, and without a healthy gut and digestive system, the body may not be able to absorb these. The same goes for effective absorption of hormonal drugs. Thus, another potential measure to improve painful endometriosis may be to optimise dietary factors and to establish a healthy balance in the gut flora. It has been shown that omega-3 and omega-6 essential fatty acids are associated with a reduction in menstrual pain3, and there is indication, which suggests that wheat, which affects zinc and magnesium levels, may aggravate pain and cause bloating. It was agreed that more evidence-based research needs to be done into the effect of nutritional medicine on endometriosis.

Controlling pain and disease physically

Rehabilitation in the form of physiotherapy, yoga, Pilates, gentle exercise, etc, may assist the body in getting back into shape post-surgery and to strengthen compromised abdominal/back muscles. Manipulation/manual therapy is an evidence-based treatment method for lower-back/pelvic pain (LBP)4. As there may be some symptomatic overlap between female LBP and women with diagnosed endometriosis, manual therapy should possibly be evaluated for the treatment of pelvic pain and/or dysfunction. However, this hypothesis has to be tested in randomised controlled trials.

Communicating treatment options

Knowledge, in the form of factual information, will enable the patient to approach her disease in a cognitive manner. This may facilitate her ability to make decisions on the appropriate treatment herself – which may also improve treatment outcome. Such knowledge should be provided by the physician, but may also be provided by patient organisations, and through participation in support groups. Long-term, individual, holistic treatment plans needs to be worked out between the woman and the physician.

Conclusion

It is apparent that treatment failures within this field are common. The group urgently calls for more scientific research to establish the origin and cause of pain in endometriosis patients, and to develop rational treatments according to the principles of evidence-based medicine. Such treatment models also have to be looked for outside the field of traditional medical and/or surgical treatment, with which it may work in conjunction. More symposia are needed to reach consensus on these, as well as to develop a strategy for endometriosis pain research.