How to find a specialist

by Lone Hummelshoj and Ros Wood

“Centres of excellence” and “specialist care” are terms that are being brandished around a lot, especially for endometriosis care. And the terms are appealing, because we all want to be treated by a specialist who works in a centre of excellence to make sure that we get the very best care.

But, who is a “specialist”, and what is a “centre of excellence”?
Most importantly: who decides if they are what they say they are?

The answer is that no accreditation system for endometriosis includes definitions of a “specialist” or a “centre of excellence”. There are many excellent physicians and surgeons who care passionately about the welfare of women with endometriosis, but none of them are accredited as specialists or centres of excellence when it comes to being accountable to an official body for the quality of the care they deliver.

Officially accredited centres or networks of excellence may be the way of the future to ensure that women with endometriosis receive consistent, multi-disciplinary, evidence-based care that is peer reviewed regularly [1]. Such centres would allow for continuity of care, training of more (accredited) specialists, and form the basis for clinical and scientific research into the disease. Centres that focuses on all aspects of endometriosis treatment would potentially also reduce the prevalence of “hit and miss treatments” and health care costs [2].

Today, “centres of excellence” like this do not exit. At the moment, an endometriosis specialist is someone who understands the disease and its impact on a woman’s life, and is prepared to discuss and offer all the available treatments. An “endometriois specialist” would not hesitate to refer women to other professionals who are more skilled in advanced laparoscopic surgery, assisted reproduction, pain management, etc, to ensure that their patients get the utmost care [3]. Using a network for specialist referrals can be as important as having a physical centre.

We must also acknowledge that specialist care is not just the responsibility of physicians: it is also our responsibility as women with endometriosis. We must ensure that we get the treatment we need and deserve. We can do so only by taking charge of our own health.

Below are ten things to consider before choosing your treatment”. When you are satisfied that these criteria have been met, you will be ready to choose your specialist or centre of excellence.

At this point, you will be working with your physician (specialist!) to ensure that your long-term treatment is the best option for you. This is when the best outcomes occur and we work towards excellence: physicians and women with endometriosis working together for the best long-term results!

Ten things to consider before choosing your treatment

  • Prepare a list of questions for your first consultation
    Write them down and “tick them off” during the consultation. Ask all the questions you want to. Do not be shy. This is your body and your treatment. You cannot make a decision without having all your questions answered and all the facts at hand.
    » talking with your physician
    » your first endometriosis consultation (questions your doctor may ask you)
  • Did the physician listen to you and answer your questions?
    If not, then you may want to go back over your list and ask again the questions, where you feel you do not have enough information to decide upon the best way forward to deal with your current symptoms.
  • Did the physician present you with all the different treatment options?
    Were potential benefits and risks/side effects associated with each surgical and medical treatment explained to you? Did you get enough information to make a decision on which treatment is best for you?
    » treatment options for endometriosis
  • Were you encouraged to make up your own mind about the next step in your treatment plan?
    Did you and the physician discuss the “pros” and “cons” of all treatment options? Did s/he make the decision about the next step, or did you?
  • If surgery was presented as an option, did you ask about:
    (a) The surgeon’s experience in endometriosis surgery, ie. the number of weekly surgeries for endometriosis, including severe disease/removal of cysts, recurrence rates, and complications?
    (b) How s/he handles complications if they occur during and/or after surgery?
    (c) The surgeon’s willingness to tape the operation and keep this on record?
    » taping endometriosis surgery
  • If surgery or medical treatments have not alleviated your symptoms in the past, is the physician prepared to refer you to a pain clinic and/or a pain psychologist?
    Does the professional recommended have experience in dealing with women with endometriosis?
    » psychology and endometriosis
    »
    coping with endometriosis
  • If surgery has not resolved your infertility, will your physician refer you to a centre capable of performing assisted reproductive techniques on women with endometriosis?
    Revisit 1 – 5 for things to consider when choosing such a centre.
  • Is your physician willing to consider extending your therapeutic network?
    While there is no evidence to support complementary therapies and self-management programmes in treating endometriosis, they should not be ruled out if you feel they may benefit your pain management and/or quality of life [2].
    » treatment options for endometriosis
  • Did you follow your gut feel?
    The sixth sense that women have may be real. Before starting treatment, make sure that the treatment choice feels right for you. Remember, it is your body. Only you will know if the path you are going down is the right one for you.
  • Bounce off any questions or concerns you may have about your treatment and physician with your local support group.
    » national support organisations
Sources
  1. D’Hooghe T and Hummelshoj L. Multi-disciplinary centres/networks of excellence for endometriosis management and research: a proposal. Hum Reprod 2006;21(11):2743-8.
  2. Simoens S, Hummelshoj L, D’Hooghe T. Endometriosis: cost estimates and methodological perspective. Human Reprod Update 2007;13:394-404.
  3. Kennedy S, Bergqvist A, Chapron C, et al. ESHRE guideline for the diagnosis and treatment of endometriosis. Human Reprod 2005;20(10):2698-2704.

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