More awareness needed to end stigma, dispel myths about endometriosis

Endometriosis affects hundreds of thousands of women every year and it is important to be on the lookout for the symptoms and seek proper care.

The chronic condition affects women during the reproductive age. It may cause symptoms such as menstrual pain, pain when passing urine or stool, or during intercourse. It may also make it harder to get pregnant.

 Is there a specific standard treatment for endometriosis?

Treatment is tailored to specific symptoms and patient preference. As there is no known cure, medications, hormonal therapy and surgery may be used to manage the symptoms. Ultimately, those who require surgery are recommended to have the affected areas cleared of endometriosis, a procedure known as excision.

Can any obstetrician gynaecologist treat endometriosis?

Mostly, endometriosis is managed by doctors with appropriate training including general obstetricians and gynaecologists. However, severe endometriosis should be managed in a centre with specialists in endometriosis care.

What expertise is required to treat endometriosis?

Expertise in management of endometriosis includes a gynaecologist with advanced training and skills in laparoscopic surgery and fertility. Other disciplines include general and urological surgeons to handle bowel and urinary endometriosis. Pain specialists and psychologists are key in the overall management of endometriosis.

What challenges surround endometriosis care?

The majority of girls and women with endometriosis still do not have access to proper care and follow-up or support system. Whereas a great interest in endometriosis has arisen in the recent past, there has been no commensurate increase in providers who are well trained and equipped to match the demand in care. 

Costs are still prohibitive while third party payers or insurance firms continue to draw limits and exclusions on what may be offered to continued care for endometriosis. 

Community awareness about endometriosis is not widespread yet there are myths, misconceptions and stigma that hinder access to care. The myths include; having endometriosis means that you are definitely infertile, heavy bleeding and extreme pain are normal period symptoms, endometriosis patients should avoid physical activity, endometriosis rarely affects young women, among others. Historically, the condition has been associated with social stigma and downplaying of symptoms from family, friends, coworkers and healthcare providers alike. This has caused patients to have feelings of shame. 

 Can I have children if I have endometriosis?

There is a popular myth that endometriosis severely compromises the ability to have children. This is far from the truth.

Whereas some women with endometriosis may have difficulties getting pregnant, a majority are able to get babies, some with medical assistance. However, it is important to bear in mind that some medical interventions for endometriosis management can potentially affect the ability to have children.

After treatment, can someone who was not conceiving get pregnant?

There is accumulating evidence that following laparoscopic treatment of endometriosis and in the absence of other fertility compromising factors, pregnancies do happen. This is generally observed up to a period of three years. Where conceiving naturally remains a challenge, assisted conception in the form of in vitro fertilisation (IVF) may offer an alternative.

 Can endometriosis recur after treatment?

Unfortunately, there is no permanent cure for endometriosis. Medical specialists have dedicated a significant amount of resources in training and research to understand how best to manage the condition and keep symptoms at bay. In some instances, there may be recurrence of symptoms, which could be due to inadequate removal of endometriosis tissue or other unrelated causes of pain. It is advisable that patients do not rush into a treatment plan without interrogating the outcomes.

What advice can you give to any woman suffering from endometriosis?

Anyone who has confirmed endometriosis or suspects to have it needs to understand that there needs will vary as time passes. Getting enrolled into a treatment programme that has a clear long-term management strategy and shared decision-making is highly recommended. It is important to get the right information and compare sources before making a choice of how you may wish to manage the condition. This plan may change depending on many circumstances.

Dr Muteshi is a consultant obstetrician gynaecologist, fertility and endometriosis expert at Aga Khan University Hospital, Nairobi