Endometriosis... a specialized field?
Written by ABEESHA TOUSSAINT
Posted on April 30 2017
Within recent times there seems to be a worldwide proliferation in endometriosis awareness year round with intensified activities concentrated in the month of March. March is recognized as Endometriosis Awareness Month in a number of countries around the world. Among all the awareness and education initiatives, the impact of endometriosis patients’ stories seems profound. Recognising this, endometriosis patients take to almost any available platform to share their experiences with the disease. Inarguably, hearing these experiences will usually form a lump in one’s throat and bring tears to his/her eyes. While the symptoms of the disease are wide-ranging, pain seems to be very commonly experienced by most patients: painful period, painful sex, painful urination, chronic pelvic pain, back pain, leg pain, painful bowel movement, migranes, and the list goes on.
For those who are unfamiliar with the term, according to endometriosis.org, “Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere.” Endometriosis causes inflammation and other health issues, the two main issues being women’s wellness and female sexual and reproductive health. It is often manifested through high absenteeism in the work place and school for women and girls respectively. Approximately, one out of every ten women is afflicted with the disease.
Here in Trinidad and Tobago the trend is very similar. That is to say, endometriosis patients are using any available platform to share their stories hoping to raise awareness and educate the general public on this incurable and life-interfering disease. Again, pain seems to be commonly featured in most experiences. In 2015, approximately 250 persons in Trinidad and 50 persons in Tobago attended the Trinidad and Tobago Endometriosis Association [TTEA] awareness seminars themed Demystifying Endometriosis; and the patrons who participated in the open forum segment were interested in one thing and one thing only, pain management. They pleadingly enquired about what can be done to bring pain relief thereby affording them a better qualify of life. There are also patients who will quietly contact the TTEA via email or Facebook to express their frustration, seek assistance for pain management or seek a recommendation for an endometriosis specialist.
Apart from the psyche-penetrating, intolerable pain experienced by most patients, what was equally disturbing/alarming was the number of surgeries including hysterectomies they underwent in an attempt to manage the disease, which brought about temporary, little, or no satisfaction. Consequently, often times, patients echo the sentiments “ We have to learn to live with the pain” and resort to accepting this painful life as a normal expression of womanhood. Recognising that endometriosis is a public health issue that should not be ignored, there is a need for intervention to improve health outcomes for patients. Obviously, within the Trinidad and Tobago context, the TTEA has a critical role in improving health outcomes. Patients play a role too. However, at the end of the day, medical practitioners, gynaecologists to be precise, are the ones who are tasked with the responsibility of treating endometriosis. In fairness to all stakeholders, there should be discussions on the local endometriosis landscape regarding best practice for treatment of
the disease. All factors considered, the question is warranted, should the treatment of endometriosis be considered a specialised field?
There was unanimous agreement among professionals working in endometriosis. Dr Brian Brady, who relocated to Trinidad in 2015, has over 20 years clinical experience in Gynaecology caring for patients with endomtriosis, with the majority of his working career based in the UK. He strongly believes the ideal approach to treating endometriosis should involve a specialized team. He explains, “Endometriosis is debilitating, painful, frustrating and can present a challenge to adequately treat. The right treatment depends on symptoms, the extent and site of disease and consists of both medical and surgical approaches.” Dr Brady expounds further, “Ideally this should be managed in a multi-disciplinary manner involving a gynaecologist with expertize and skills in the laparoscopic excision of disease. Other specialists are sometimes required including bowel surgeons and urologists. It is important to have fertility counselling, and support from pain specialists and psychologists. Complementary therapies such as acupuncture and diet should also be considered.”
Lone Hummelshoj, General Secretary of the World Endometriosis Society [WES], CEO of the World Endometriosis Research Foundation [WERF], and publisher/author of endometriosis.org, explicitly states, “ I feel strongly that endometriosis should be treated by specialists, who are trained specifically to address the complexity of the disease and work with each individual woman on her specific treatment plan.” Hummelshoj also stated, “The World Endometriosis Society [WES] addressed this in its 2013 publication Human Reproduction on the management of endometriosis.” She quoted, “Individualised care benefits from a multidisciplinary network of experts sufficiently skilled in providing advice on and treatment of endometriosis and its associated symptoms, based on the best available evidence, their extensive experience, and their transparent record of success rates.”
The view of Nancy Petersen, retired registered nurse, and founder of the largest Facebook patient group, Nancy’s Nook, Endometriosis Education and Discussion with just over 20,000 patients was very similar. “Absolutely, endometriosis treatment should be a specialized field,” Petersen claimed. However, Petersen offers an explanation that openly challenges mainstream teaching on endometriosis. She postulates, “Most gyn's have been taught that pregnancy, hormones and surgical castrating will resolve endometriosis. None of that is true nor has science to support the contentions. They come from 100 years of myth started by John Sampson and added to by numerous people over the years.” Petersen continues to explain, “The premise is if you remove the organs endo will dry up and go away. This is not true, endo makes its own estrogen even after a hysterectomy or natural menopause. There are numerous studies now showing painful active endometriosis post castration.”
Granted endometriosis should be treated by a specialist, how then does a medical practitioner specialize in the disease? Through an accredited fellowship programme says Dr Brady. In addition to being “a specialist gynaecological surgeon who has both an interest and expertise in this field,” specialisation “Should also include advanced surgical training in minimally invasive gynaecological surgery ideally in an accredited fellowship
programme.” Petersen states, “Most of the specialty centers have doctors trained specifically in the advanced treatment of endometriosis.” Interestingly, however, Hummelshoj indicated that there has been no consensus reached among professional organizations on quantifying the additional training needed to become an “endometriosis specialist”, nor accreditation for “centres of expertise in endometriosis.”
Based on expert opinion, the treatment of endometriosis requires specialized care using a multi-disciplinary approach to give patients the best possible health outcomes and quality of life. “In the ideal situation patients in Trinidad should have access to trained specialists with expertise in minimal access gynaecology with a multi-disciplinary approach to their treatment, ” says Dr Brady. Certainly, there is a need to commence discussions soon on best practice for endometriosis in Trinidad and Tobago.