AboutHeather Guidone Expertise Surgical Program Director, Center for Endometriosis Care / Member, Executive Board of Directors, Endometriosis Research Center / Extensively published women's health writer and consultant to major biotech, health and clinical research corporations.
Experience Heather Guidone is a certified Health Educator who holds additional various medical and professional certifications, including in Medical/Surgical Technology and Anatomy & Physiology, from such respected universities as Rutgers and Columbia. She is also a member of the American Society for Reproductive Medicine, the International PAX Society, the American Medical Writer's Association, the World Endometriosis Society, and the World Endometriosis Research Foundation, among many other acclaimed foundations and organizations.
In addition to serving as the Surgical Program Director of the Center for Endometriosis Care and a member of the Executive Board of Directors for the International Endometriosis Research Center, she is also an extensively published freelance medical writer and women's health consultant. Her diverse works involve authorship of extensive clinical and consumer materials utilizing peer reviewed sources; interaction with patient, physician, professional and media networks; liaising with industry representatives on various activities and opportunities, including grants, funding, education, research, and lobbying efforts for awareness; and so much more. She also attends and reports on various global medical symposia, including the World Congresses on Endometriosis and the International Controversies in GnRH Agonists; networks with medical, biopharmaceutical, medicolegal and related industry professionals to establish research projects, product focus studies and clinical trials; and presents frequently as a guest speaker to advocacy groups, health professionals, and students. Previously, she was among the nominees considered for appointment to the United States Food & Drug Administration's Center for Drug Evaluation and Research's (CDER) Reproductive Health Drugs Advisory Board.
Ms. Guidone serves as a professional liaison to, and has worked on behalf of, many of the world's leading biotech, medical device and technology, clinical research and health care marketing firms, developing original content on a myriad of topics, including original presentations, CME and health practitioner education materials, slide kits and speaker content, marketing materials, newsletters, website content, substantive edits, slides and graphics, proof of concept efforts, book reviews and critiques, sales sheets, press releases, branding development, monographs, white papers, training materials, investigational case studies, and much more. She is also the author of countless Endometriosis, reproductive, and general education materials in both the consumer-oriented and professional sectors of the health industry. She is often sought after by various media sources and advocacy groups for her expertise in women's reproductive health, Endometriosis, and chronic pelvic pain conditions, and has authored various additional content contributions and forewords in several prominent books and publications on such topics.
**She will neither diagnose nor offer medical advice,** but is fully able to share two decades of professional experience in the women's health arena as well as personal perspective through a 25 year battle with Stage IV Endometriosis, Adenomyosis, Infertility, Fibroids and Pelvic Adhesive Disease.
Expert: Heather Guidone Date: 6/20/2008 Subject: lupron post hysterectomy
Question I recently had a hysterectomy (3 weeks ago). My doctor wants me to take Lupron injections for 3 months. Is that necessary? I had a complete hysterectomy, ovaries, cervix and all. I thought once the ovaries were gone the endometriosis did not have anything to feed on and would reabsorb into the body.
Answer Dear Brenda,
Sorry to learn of what you've been going through.
Use of GnRH analogs (specifically Lupron) in post-menopausal/post-oophorectomy patients is considered "off label" usage. This means - it has neither been FDA approved for, nor tested in, such usage (much like the use of Lupron in IVF - for which it has also never been FDA approved). Any positive effects such a method may confer on the patient are largely empiric and not backed by clinical data.
However, the side effects of Lupron *are* widely known, and may in fact be worsened by the consideration that you are already - or will be soon - experiencing post-hysterectomy/BSO effects. Side effects of Lupron include - according to *the manufacturer* themselves - Bone Mineral Density loss, Asthenia, General pain, Headache, Hot flashes/sweats, Nausea/vomiting, GI disturbances, Edema, Weight gain/loss, Acne, Hirsutism, Joint disorder, Myalgia, Decreased libido, Depression/emotional lability, Dizziness, Nervousness, Neuromuscular disorders, Paresthesias, Skin reactions at injection site, Breast changes/tenderness/pain, Vaginitis, Flu-like symptoms, Heart palpitations, Syncope, Tachycardia, Appetite changes, Dry mouth, Thirst, Ecchymosis, Lymphadenopathy, Anxiety, Insomnia/Sleep disorders, Delusions, Memory disorder, Personality disorders, Rhinitis, Alopecia, Hair disorder, Nail disorder, Conjunctivitis, Ophthalmologic disorders, Taste perversion, and Dysuria - and this is NOT a complete listing of negative side effects.
You may also not know that Lupron was “black boxed” by the FDA in 2005 to include the following in the prescribing literature:
"Pituitary apoplexy: During post-marketing surveillance, rare cases of pituitary apoplexy (a clinical syndrome secondary to infarction of the pituitary gland) have been reported after the administration of gonadotropin-releasing hormone agonists. In a majority of these cases, a pituitary adenoma was diagnosed, with a majority of pituitary apoplexy cases occurring within 2 weeks of the first dose, and some within the first hour.” [http://www.fda.gov/medwatch]
So you can see there are several potential nasty effects with this drug, and in your case, only a presumed benefit. Hysterectomy performs a similar (though obviously permanent) action to Lupron in terms of hormonal suppression, and they were never intended to be used together. Lupron is/was designed for use in menstruating women who would benefit from the temporary "quieting" of the hypothalamic-pituitary-ovarian axis (i.e., largely the circulating estrogenic hormones). Yours are already suppressed from oophorectomy, so why the need for additional suppression in a manner which has never been clinically approved or shown to be effective?
The answer is, because your doctor is apparently not confident that he or she got all disease completely removed, and wants to subject you to Lupron injections to "kill off" any remaining disease.
Unfortunately, Lupron does not "kill off" Endometriosis, it merely and very temporarily shrinks it. Secondly, hysterectomy is not a cure for Endometriosis - the disease needs no external HRT to thrive, as it produces its own estrogen-synthesizing enzyme known as Aromatase (see other answers on this site for more details on that), which permits it to persist following complete hysterectomy. In essence, the implants and lesions "feed" on themselves.
It is imperative that all disease be truly removed such as through excision - the key to treating Endo effectively is to remove disease, not organs.
Lupron will likely do little more - if anything - in your current situation than temporarily suppress the remaining disease, but this may come at a potentially very high cost in terms of side effects, not the least of which is irreversible bone loss, which you will already be subjected to as a result of your BSO.
You will likely want to review the post-hyst GnRH recommendation with another physician for a second, and perhaps third, opinion. I recommend contacting a specialty treatment center for Endometriosis, where the practitioners are true experts on the disease. Such centers include our own at CenterForEndo.com, Dr. Redwine at EndometriosisSurgeon.com, Dr. Robbins at EndoExcision.com, and a small handful of others across the country who can be found through helpful online support and education sites like http://ERC.activeboard.com/. I recommend strongly researching what has been presented to you as an option and consult with others in the Endo field who may be able to suggest helpful alternatives for you.
