Caring for women with Endometriosis
Endometriosis is a frequent cause of pelvic pain and infertility in women of reproductive age so it is important that practice nurses have an understanding of this condition
Endometriosis is a gynaecological condition that is defined as the presence of endometrial-like tissue outside the uterine cavity. The endometrium is the lining tissue of the uterus and is responsive to the hormones secreted by the ovaries and which, in turn, produces menstrual bleeding.
Endometriosis deposits behave like the uterine lining and can bleed on a cyclical basis just like the endometrium. The inner lining of the abdominal and pelvic cavity (peritoneum), which is also draped over the uterus and fallopian tubes, is very sensitive to blood and becomes irritated by it. This irritation causes inflammation and may then cause tissues to become stuck together (adhesions) which may distort the anatomy and cause pain and abnormal function.1
Although the aetiology remains unclear the most widely accepted theory involves the retrograde menstrual flow of endometrial tissue through the fallopian tubes during menstruation into the peritoneal cavity.
Deposits of endometriosis are often found behind the uterus in the Pouch of Douglas. This area is just above the top of the vagina behind the cervix. Women with endometriosis often complain of deep pain during intercourse, because penetrative sex causes pressure against this area. Endometriosis is one of the most common causes of pelvic pain and infertility in women of reproductive age across all ethnic and socio-economic backgrounds and there are over two million women living with endometriosis in the UK.1 Chronic pelvic pain is complicated and multifactorial and some women will have coexisting causes. It is defined as constant or recurring pain of at least six months duration. Endometriosis is a condition that is oestrogen dependent.1
CLINICAL PICTURE
Physical examination findings are typically unremarkable, so the diagnosis of endometriosis is frequently determined empirically on the basis of clinical history. The clinical presentation of endometriosis varies in its severity. Some women with the condition may be relatively symptom-free, whilst others can be stricken with pain and/or the consequences of endometriosis such as infertility. Of the symptoms that women present with, (Box 1) pelvic pain is the most common one that motivates a woman to seek help and advice. Pelvic pain tends to increase in severity premenstrually and subsides after menstruation ceases. Endometriosis typically appears as superficial 'powder-burn' or 'gunshot' lesions on the ovaries and on the peritoneal surfaces both over the organs and the pelvic walls. When there is ovarian involvement, endometriosis can present as cysts. These cysts are known as endometriomas and they are filled with a thick, dark red/brown material (altered blood), which resembles chocolate and it is for this reason that they are called 'chocolate cysts'.1
DIAGNOSIS
Confirming the diagnosis of endometriosis based on clinical presentation alone can be difficult because of its wide range of symptoms (Box 1) and significant overlap with other conditions such as Pelvic Inflammatory Disease (PID), Interstitial Cystitis (IC) or Irritable Bowel Syndrome (IBS).1,2 Consequently, a diagnostic delay of several years from onset of symptoms frequently occurs especially in adolescent women.3 Ultrasound scanning may pick up ovarian cysts associated with endometriosis (endometriomas) but will not be able to detect smaller lesions that can be clinically very significant. The gold standard for diagnosis is laparoscopy.1
TREATMENT
Treatment should be individualised and depends partly on the severity of symptoms, the clinical and diagnostic findings and the desired outcome.1 Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and mefenamic acid (Ponstan) have been shown to be effective in reducing inflammation and help ease the pain in some women.4 These drugs block the production of prostaglandins in the body therefore they are only effective if they are taken before the body produces prostaglandins. NSAIDs should be taken several days before a period or pain is expected. Paracetamol as an alternative taken during periods may help relieve mild symptoms.
The intrauterine system (IUS), Mirena, has been used for many years for contraception and in recent years for menorrhagia. It contains a progestogen hormone called levonorgestrel. It is also called the LNG-IUS, which is short for levonorgestrel intrauterine system. Studies have shown it to reduce endometriosis-associated pain in women with endometriosis that has been confirmed by laparoscopy. It definitely appears to be of benefit in terms of recurrence of symptoms.5,6
A woman wishing to conceive may need laparoscopy with the aim of restoration, as much as possible, of normal anatomy e.g. draining of endometriomas, release of adhesions, destruction of endometrial deposits and will then be advised to try to conceive naturally but without delay unless there are known factors that require her to undergo IVF (e.g. blocked tubes).7,8
A woman who is not wishing to conceive may be advised that suppression of her normal hormonal cycle will be helpful in reducing her symptoms and preventing further damage internally.1 Suppression of the normal cycle is achieved by hormones, and the simplest approach is either using a contraceptive pill such as the combined pill, or Cerazette.9 A low dose progestogen-only pill is not adequate. The contraceptive pill can be taken back-to-back for 2 or 3 cycles to minimise the number of bleeds.
Other alternatives for suppressing the ovaries include high dose progestogens such as norethisterone. GnRH analogues may be given prior to surgery but they cause a temporary menopause as they stop oestrogen production by the ovaries altogether. The side effects e.g. bone density depletion, make this treatment unsuitable except on a short-term basis.10 (Box 2)
SURGICAL MANAGEMENT
Medical therapy can be highly effective in symptom control in women with endometriosis. However, recurrence of symptoms is usual after stopping treatment. The reason for this is medical therapy tends to reduces ovarian activity and hence suppresses the diseased tissue but does not remove it. If medical management fails to adequately alleviate pain in women especially in those wishing to conceive, surgery is an option. The aim of surgery is to remove visible disease and restore functionality of the pelvic organs.7 It is now considered best practice to remove all visible deposits through ablation or excision of superficial disease and excision of deeper disease.1 Laparoscopic treatment may be combined with ovarian suppression. The reason for this is to improve treatment success.
IMPLICATIONS FOR PRACTICE
Endometriosis is a chronic condition that can affect women of all ages during their reproductive years. It can be suspected by clinical findings on vaginal examination. Occasionally endometriosis can affect other parts of the body such as the bowel or lungs.1
It is the most common cause of pelvic pain and infertility in women so it is important that practice nurses have an understanding of pain management and fertility issues that can accompany this condition. They also need to consider the potential impact on a woman's quality of life.
This patient group need sound information from any health professional involved in their care. This includes diagnosis, current treatment options, medication side effects, and management. Recommendations for practice should include timely diagnosis, pain management, infertility counselling, patient education and support for quality of life issues.
Given that most contraception prescribing and management is undertaken by the practice nurse, routine family planning appointments provide an ideal opportunity to enquire whether there are any problems relating to sex, such as pain during intercourse, or whether a woman is experiencing painful periods/bleeds. As contraceptive pills are part of the treatment of endometriosis, this is a further avenue for information-giving, both about the Pill and how it works in this condition as well as the general information that women need to know about its effective use for contraception.
Consultations with doctors are often too short, so women may subsequently have questions about their diagnosis that they would like to discuss. Appointments with the practice nurse may be the ideal opportunity for this. Lastly, where women have been identified as having symptoms likely to be endometriosis-related, the practice nurse can arrange for the woman to be referred to secondary care for further intervention if needed.
CONCLUSION
To promote quality of life and reduce pain symptoms effective management of endometriosis requires prompt diagnosis and an individualised, multidisciplinary approach by the practice team to effect treatment. It is imperative for practice nurses to be knowledgeable about symptoms, cause, clinical presentation, diagnosis and current treatment options of this condition. Practice nurses play an important and pivotal role in health promotion and disease prevention in the primary care setting, and can provide much needed support and information to the patient with endometriosis.
REFERENCES
1. Royal College of Obstetricians & Gynaecologists. Endometriosis investigation and management. Green-top guideline number 24 (2006)
2. Kennedy S, Bergqvist A, Chapron C, et al. ESHRE guidelines for the diagnosis and treatment of endometriosis. Hum Reprod 2005;20:2698-704
3. Hadfield R, Mardon H, Barlow D. Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK. Hum Reprod 1996;11:878-80
4. Allen C, Hopewell S, Prentice A. Non-steroidal anti-inflammatory drugs for pain in women with endometriosis. Cochrane Database Syst Rev 2005;CD004753
5. Vercellini P, Aimi G, Panazza S, et al. A levonorgestrel-releasing intrauterine system for the treatment of dysmenorrhea associated with endometriosis: a pilot study. Fertil Steril 1999;72:505-8
6. Petta CA, Ferriani RA, Abrao MS, et al. randomized clinical trial of a levonorgestrel-releasing intrauterine system and a depot GnRH analogue for the treatment of chronic pelvic pain in women with endometriosis. Hum Reprod 2005;20:1993-8
7. Abbott JA, Hawe J, Clayton RD, et al. The effects and effectiveness of laparoscopic excision of endometriosis: a prospective study with 2-5 year follow-up. Hum Reprod 2003;18:1922-7
8. Jacobson TZ, Barlow DH, Garry R, et al. Laparscopic surgery for pelvic pain associated with endometriosis. Cochrane Database Syst Rev 2001;CD001300
9. Davis L Kennedy SS, Moore J, Prentice A. Modern combined oral contraceptives for pain associated with endometriosis. Cochrane Database Syst Rev 2007;CD001019
10. Sagsveen M, Farmer JE, Prentic A, et al. Gonadotrophin-releasing hormone analogues for endometriosis: bone mineral density. Cochrane Database Syst Rev 2003;CD001297
