What is endometriosis?
The womb lining is specially made in women to shed monthly once ovulation occurs and there fails to be a pregnancy. Uniquely cells of the womb lining are responsive to the ovarian hormones oestrogen and progesterone promoting and slowing growth respectively. Women with endometriosis have tissue similar to the womb lining found elsewhere in the body. Commonly, this is in the pelvis around the structures attached to the uterus, ovaries, bladder and bowel. Other sites of endometriosis include the lungs, skin and even the brain.
The cause of endometriosis is unknown. Common risk factors include a family history of endometriosis, heavy and short menstrual cycles and low BMI.
Endometriosis affects women during the reproductive age beginning at puberty till the menopause, this being i response to activity of the ovarian hormones.
There are no symptoms specific to endometriosis, however, painful periods is the commonest presentation. Pain may start as soon as periods begin at puberty. Other symptoms include pain during ovulation, when opening bowels or passing urine. Some ladies may have a cyclic bloody discharge from the navel (belly button). In women who are sexually active, intimacy may also be painful. Occasionally, there is recurrent chest pain coincidental with periods. Fatigue, abdominal discomfort and bloating are also common in endometriosis patients.
The doctor examines to exclude other causes of similar symptoms. A speculum examination similar to a Pap smear may reveal an endometriosis nodule. An internal examination may reveal areas of tenderness (pain) or a nodule. Often the doctor will require an ultrasound scan to assess the uterus, ovaries and surrounding structures. This is best done by your gynaecologist if they are trained to do so. It is not mandatory toperform an MRI in diagnosing endometriosis, however, it may be useful where previous surgery has suggested severe endometriosis or symptoms point to bowel or urinary tract disease. This is a useful test when planning complex excision surgery.
Definite diagnosis of endometriosis requires a surgical operation called laparoscopy. This is a key-hole surgery that involves passing a long telescope through the belly button and looking inside the abdomen and pelvis to see endometriosis lesions. Small incisions (5mm) are passed through the lower abdomen where the surgeon may operate. The lesions are taken away for examination in the laboratory, however, a lack of laboratory confirmation does not exclude endometriosis.
Pain is an unpleasant experience from actual or potential tissue damage. Managing pain effectively requires a deeper understanding of pain mechanisms involved in endometriosis. Pain in endometriosis may be inflammatory, involve scarring with new nerve formation or be accentuated by central (brain and spinal cord) pathways. Considerations for pain management should be based on age, quality of life, goals such as fertility desire, previous treatments including surgery, pain mechanisms and associated symptoms including involvement of bowel, bladder and ureter. Involvement of the ureter causing obstruction requires immediate surgical relief by placing a stent.
For some patients, use of regular pain medications may take the edge off the pain, however, this may not be the case with everyone and specialist advice is required. Depending on associated symptoms and with no immediate desire to conceive a pregnancy the use of hormonal medications such as the contraceptive pill may relieve pain symptoms. This is also useful when periods are heavy and a need for contraception is contemplated. Long-term use of the combined pill has the added benefit of reducing risks for ovarian and endometrial cancer. This can be taken cyclically or continuously. Usually, fertility returns immediately on cessation of use.
Progesterone only preparations are also effective for treatment of endometriosis related pain. A variety of preparations are available including the mini-pill, depoprovera and the intrauterine system. Care must be taken if contraception is also desired while taking the mini-pill as this may not be very effective.
Suppressing ovarian activity to mimic the menopause may provide relief of pain symptoms in some women. This option must be given under the supervision of a trained specialist and long-term use without oestrogen replacement is not recommended. It is only sensible to consider this option if surgery has been performed with a definite diagnosis of endometriosis and pain has not responded to other treatment modalities.
Where pain does not improve despite hormone medications, referral must be made to a specialist to consider other possible diagnosis and evaluate for accentuating factors. These may include a gastroenterologist, pain specialist or psychologist. A physiotherapist with specialist training in pain management often finds an invaluable role at this stage. It requires coordination by the primary doctor to ensure the patient walks through the complex maze of treatment successfully as barriers may impede the long and tortous treatment journey.
Endometriosis is associated with subfertility through a variety of mechanisms. It is reassuring to note that a majority of women with endometriosis will conceive naturally without delay. There may however be confounding factors such as decreased frequency of intercourse due to pain which may be accentuated by withdrawal of hormonal medications. There is evidence that surgical excision of endometriosis improves both pain symptoms and conception rate.
A diagnosis of endometriosis should prompt early review by a specialist when conception hasn’t happened following at-least six months of trying. Routine examination and tests should include semen analysis, and confirmation of ovulation. Tubal patency testing is best performed by laparoscopy as any abnormalities may be corrected at the same time. It will only be useful to
perform laparoscopy if sperm count and other parameters on semen analysis are normal. If the fallopian tubes are severely damaged or sperm count very low, then in vitro fertilisation (IVF) is recommended. It is not necessary to perform endometriosis surgery prior to IVF, unless there is fluid in the fallopian tubes (hydrosalpinx), a very large ovarian cyst or pain symptoms are severely debilitating. Exemplary care must be taken to ensure minimal damage to the ovaries at surgery.
Where the ovarian reserve is normal and there is no other additional fertility issue such as blocked fallopian tubes or severe sperm abnormalities, the chance of successful IVF treatment remains good. Some women with endometriosis may unfortunately due to recurrent ovarian cysts develop premature ovarian insufficiency. This means due to a lack of oocytes, natural or assisted conception is not possible with their own eggs. It is a life changing diagnosis and multidisciplinary management involving a fertility specialist and counselling psychologist become extremely invaluable.
Ovarian insufficiency also implies a lack of oestrogen. Besides fertility, this needs replacement till age of natural menopause as it is key for bone and heart health.
There is no doubt surgery is important in endometriosis management. It is key to emphasise that expert surgery achieves best results over the longer-term and carries lower risks of complications. The main indication for surgery in endometriosis is pain. This may or may not be associated with other conditions such as endometriosis cysts on the ovaries or bowel, bladder or ureteric involvement. Surgery must be arranged as soon as possible if the ureter is obstructed by endometriosis, preferably in a centre of excellence in endometriosis surgery.
Successful surgery is likely to relieve pain symptoms in two thirds to three quarters of patients. Often pain may recur due to incomplete excision, involvement by other pain mechanisms or co-existent adenomyosis. Careful evaluation prior to surgery may help identify patients who are likely to benefit from surgery. Multidisciplinary involvement by pain specialist, counsellor and physiotherapist at this stage is important. Pre-operative planning using ultrasound imaging or MRI (where severe endometriosis is suspected) helps to set up the right team for the operation. Where ovarian endometrioma cysts are seen on ultrasound, this often indicates severe endometriosis. A surgeon with laparoscopic skills to tackle endometriosis on vital structures such as bowel, urinary system and ovaries should lead the operative team. The patient will need to have adequate information and make an informed decision for surgery weighing the pros and cons of surgery. This may require planning over weeks or months.
Complete surgery involves removing endometriosis lesions from the pelvic organs, including resection from the pelvic side wall, the ureter, bowel, bladder or even blood vessels. Sometimes the nerves are involves.
Where there is an endometrioma cyst on the ovary, careful dissection to remove the cyst minimising damage to normal ovarian tissue should be the goal. Our team has set up a study looking at a novel strategy aimed at minimising risk of ovarian reserve damage.
In some instances a hysterectomy (removal of the uterus) is necessary to relieve symptoms of pain. This is usually more useful when there is co-existent adenomyosis. Even so, all endometriosis lesions must be excised to reduce recurrence of pain symptoms. Ideally, the ovaries should also be removed, though this produces instant surgical menopause and very clear discussion should go into this decision.
Menopause is a period of natural cessation of ovarian activity. The ovarian hormones decline and reproductive capacity comes to an end. The average age for the menopause in Western countries is about 50 years, though it is reported to occur earlier in women with endometriosis. Patients with endometriosis who have had endometrioma surgery or their ovaries removed may suffer debilitating menopause symptoms. Women going into the menopause before the age of 50 have an increased risk of adverse cardiovascular events and osteoporosis. Osteoporosis is a significant risk factor for fragility fractures mainly the vertebra, hip and wrist. Use of hormone replacement alleviates menopausal symptoms and reduces the adverse effects of a lack of oestrogen on the heart and bones.
Because endometriosis may be reactivated by use of hormone replacement, it is recommended that a combination of oestrogen and progesterone is given. Preferably in combined continuous regime. This is the case including where a hysterectomy has been performed. It is obviously important to balance the benefits and risks of hormone replacement and the specialist must discuss and individualise the situation. Regular exercise, avoidance of excess alcohol, smoking cessation and taking calcium & vitamin D are also recommended.
Quality of life is a composite measure of wellness.Being a chronic condition with changing priorities, women with endometriosis are reported to have lower quality of life on various sub-scales across the life-span. Delay in diagnosis means that women will be in pain for a considerable period of time. Sometimes, adverse effects of treatment may leave the patient more devastated than the cause of pain.
Chronic absenteeism and presenteeism are well known among endometriosis patients and this could lead to job losses, lack of job mobility and career progression. Women may feel a burden to team members and could endure a difficult work environment.
Participation in social events and recreational activities may be curtailed and sometimes social cycles are narrowed down. These have very negative consequences and could lead to a spiralling down into self-pity. It requires a dedicated team of professionals to be able to bring these issues to the fore and address the patient holistically. A patient with endometriosis is not just pain or fertility, but a wholesome person who requires compassion, understanding and support. Having the patient at the centre-stage of her care and addressing needs as prioritised will capture the full spectrum of concerns. This underscores the importance of a functional multidisciplinary team in which the patient feels confident.