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Need for more awareness to address endometriosis stigma and myths

<p><img src="/nairobi/PublishingImages/Excision%20endometriosis%201.jpg" alt="" style="margin: 5px; font-family: helvetica;"/> </p><p><span style="font-family: helvetica;">If you think you might have endometriosis, you aren&#39;t alone. The condition affects hundreds of thousands of women every year and it is important to be on the lookout for the exact symptoms that directly point to the condition and seek proper care.</span></p><p><span style="font-family: helvetica;">Endometriosis is a chronic condition that 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 cause delay in getting pregnant.  Here&#39;s more to this condition.</span></p><p><strong style="font-family: helvetica;">Is there a specific standard treatment for endometriosis?</strong></p><p><span style="font-family: helvetica;">Treatment of endometriosis 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. </span></p><p><strong style="font-family: helvetica;">Can any obstetrician gynecologist treat endometriosis?</strong></p><p><span style="font-family: helvetica;">Mostly, endometriosis may be 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.</span></p><p><strong style="font-family: helvetica;">What expertise is required to treat endometriosis?</strong></p><p><span style="font-family: helvetica;">Expertise in management of endometriosis includes a gynaecologist with advanced training and skills in laparoscopic surgery and also 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.</span></p><p><strong style="font-family: helvetica;">How many patients have you managed since you launched the service?</strong></p><p><span style="font-family: helvetica;">It has been an exciting journey over the last 5 years at Aga Khan University Hospital since we set up a dedicated service for management of severe endometriosis and became a key referral centre.</span></p><p><span style="font-family: helvetica;">Each year, we operate on nearly 100 patients and see many more in clinic who are on various forms of treatment.</span></p><p><strong style="font-family: helvetica;">How have the outcomes been for you and the patients you have treated?</strong></p><p><span style="font-family: helvetica;">Most of our patients are followed up by the multidisciplinary team as they each have unique medical and personal need. This approach guarantees that each patient is looked after with a very tailored plan. We have also pioneered a patient support system called Endo-buddy that complements our efforts. Overall outcomes are quite satisfactory.</span></p><p><strong style="font-family: helvetica;">What challenges surround endometriosis care?</strong></p><p><span style="font-family: helvetica;">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 and third party payers or insurance continue to draw limits and exclusions on what may be offered to continued care for endometriosis.</span></p><p><span style="font-family: helvetica;">Community awareness about endometriosis is not widespread and there may be myths that hinder access to care including stigmatization.</span></p><p><span style="font-family: helvetica;">Despite the challenges, our academic model of endometriosis management provides comprehensive care and also endeavours to study the unique features of endometriosis in our population to tailor the care.</span></p><p><strong style="font-family: helvetica;">Can I have children if I have endometriosis?</strong></p><p><span style="font-family: helvetica;">There is a popular myth that endometriosis severely compromises the ability to have children. The truth is far from it.</span></p><p><span style="font-family: helvetica;">Whereas some ladies with endometriosis may have challenges in getting pregnant, a majority are able to get babies, some with medical assistance. It is important to bear in mind that some medical interventions for endometriosis management can potentially affect ability to have children.</span></p><p><strong style="font-family: helvetica;">After treatment can someone who wasn&#39;t conceiving get pregnant?</strong></p><p><span style="font-family: helvetica;">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 3 years. Where conceiving naturally remains a challenge, assisted conception in the form of in vitro fertilisatio (IVF) may offer an alternative.</span></p><p><strong style="font-family: helvetica;">Can endometriosis recur after treatment?</strong></p><p><span style="font-family: helvetica;">Unfortunately, there is no permanent cure of endometriosis. Medical specialists have dedicated             a significant amount of resources in training and research to understand how best to manage endometriosis 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 of the treating doctor and also having clear expectations of the treatment outcomes. </span></p><p><strong style="font-family: helvetica;">What advice can you give to any lady suffering from endometriosis?</strong></p><p><span style="font-family: helvetica;">Anyone who has confirmed endometriosis or suspects to have endometriosis 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 endometriosis. This plan may chance depending on circumstances and it is always important to engage with healthcare that have liberal approach to your views.
</em></span></p><p><em style="font-family: helvetica;">By Dr Charles Muteshi, Consultant Obstetrician Gynaecologist, Fertility and Endometriosis Expert at Aga Khan University Hospital, Nairobi</em></p>

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