Menarche which refers to the onset of periods can be disruptive to any woman’s life. Symptoms include dysmenorrhoea, irregular bleeding, cyclical behaviour disturbances and emotional instability, due to monthly hormonal surges/changes.

For parents or caregivers of these adolescents, concerns regarding menstrual management, personal hygiene, vulnerability to sexual abuse and even pregnancy may arise. These fears are even more significant when these girls stay in care facilities. The management of problems faced by these young ladies are different from the normal population, as there are often other co-morbid conditions, like epilepsy, obesity, other medication or decreased insight to consider.

Common problems experienced by parents or caregivers are anxiety around menstrual hygiene worsened by decreased mobility, contractures, bladder and bowel incontinence and behavioural problems. It has been shown that up to 18% of women with disabilities experience premenstrual syndrome (PMS) when compared to the general population. Women with physical disabilities understand the need for hygiene and symptom control, but may have difficulties due to physical limitations, or reliance on others to achieve this.

Due to the lack of studies and evidence based guidelines, doctors often struggle to manage such cases. The following options need to be measured against the needs of the adolescent and the degree of disability/understanding.

Medical options

Combined oral contraceptive pill (COC)

The combined oral contraceptives are widely used, as it requires taking only one pill daily and it assists in the control of menstrual flow, dysmenorrhoea and the timing of menses. It is often used continuously to decrease periods and to allow for predictability of bleeding. Due to the risk of DVT’s or clot formation associated with the use of COC, it may not be a suitable option for women on other medication like seizure control (epileptic) treatment. The efficacy of the pill may be decreased, leading to irregular bleeding and possibly problems with control of seizures.

Transdermal patch

The patch has the same disadvantages as the pill, but is an option for girls that have difficulty swallowing and where compliance is a problem. The patch can also be used for nine weeks continuously with a seven day withdrawal period. The major drawbacks include more severe symptoms of breast tenderness, dysmenorrhoea, nausea and vomiting compared to the COC.

Depot medroxyprogesterone acetate (DMPA)

The three month injections bring about amenorrhoea and are given as an intramuscular injection every 12 weeks. It eliminates the problem of daily compliance and swallowing. The cessation of menstruation is usually achieved within the first year of use in more than 50% of users and breakthrough bleeding is a short term problem. The main problem with DMPA is the effects on bone mineral density (BMD) which is already a problem in women with disabilities. It is therefore only used in young girls, when other options are not available. If this method of contraception is used, the following information needs to be borne in mind, bone scans should be taken to assess BMD, calcium and vitamin D supplementation, as well as daily exercise, and oestrogen supplementation, for those with proven osteopenia (low bone mass) on bone scan.

Progesterone only implant

This implant is place on the inner part of the forearm and can be used for up to three years. Like the injection, it can cause amenorrhoea, but also irregular bleeding, which may warrant removal. It can only be done for girls who would tolerate the insertion procedure. The most common reason for removal is mood swings. This method is advantageous for those women who experience no side effects and requires minimal effort.

Surgical options

Mirena (Levonorgesterol intrauterine system)

This is the medicated loop and is used successfully by many women with the benefits of amenorrhoea in up to 90% of women and is proven to relieve in dysmenorrhoea. The insertion of this system is best done in theatre under a general anaesthetic, as cooperation is needed, if done outside a theatre setting. Performing the procedure in theatre increases the risk of co-morbid conditions, making the use of anaesthetic difficult/ dangerous. The effects last for five years and is very good option for girls were compliance is a problem or medical conditions prevent the use of other methods.

Endometrial ablation

This procedure aims to either burn or resect the lining of the uterus. This is best done in theatre; therefore it has   the same risks associated with an operation. In the young patient, it treats the heavy menstrual bleeding, both regular and irregular, but may need to be combined with a COC, in those at risk of pregnancy. The risks of falling pregnant after an ablation, albeit small, is associated with significant pregnancy complications. The advantage over hysterectomy is the prolonged hormonal benefits provided by the ovaries and the decreased risk of morbidity associated with surgery.

Hysterectomy

This should be seen as the final option and only when the other methods have failed or are contra indicated. It is a permanent solution regarding menstrual problems, but has significant operative, post operative and long term morbidity effects. In most cases, medical treatment is able to solve menstrual problems and therefore the need for hysterectomy is limited and reserved for extraordinary situations. In South Africa, this decision is made after an assessment by a team of medical professionals that includes a social worker, nurse, medical doctor, psychiatrist and psychologist.

There are many ethical issues involved in the management of a normal physiological process (menstruation) and therefore not an easy topic of discussion, for all concerned. The best interest of the child need to be protected and treatment should only be instituted, if it is a problem for the adolescent and not for the benefit of the parents or caregivers. 

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