TWSHF's Written Testimony to the NIH Offfice of Reseach Women's Health
Posted Oct 02 2009 10:01pm
ORWH is in the process of exploring new dimensions and strategies for women’s health and sex/gender research priorities for the NIH in the coming years. Such efforts include a renewed emphasis on normal processes, developmental biology, and aging in women, reflection upon the potential application of new technologies, emerging diseases and conditions that may affect women’s health or affect women differently, and integration of cutting edge diagnostic and therapeutic strategies into health care delivery, among other perspectives.
Request for Public Testimony on Women's Health The Office of Research on Women’s Health has invited individuals representing organizations with an interest in research areas related to women’s health to provide written and/or oral testimony on these topics and/or on issues related to the sustained advancement of women in biomedical careers at a public hearing to be held on October 14, 2009 in Chicago.
TWSHF has submitted the below testimony in an effort to advance women's sexual wellness and health. This testimony is also in honor of all breast cancer survivors.
There are many diseases and conditions that may be impacted by sex hormones. Furthermore, sex hormones and diseases can have a relationship to female sexual dysfunction, which often goes unrecognized. Female sexual dysfunction, known as FSD, is a relatively common health concern of women. The Mayo Clinic states that as many as four in ten women may suffer from FSD. [i] Studies have shown that FSD and other sexual problems have been linked to a “diminished quality of life, low physical satisfaction, low emotional satisfaction, and low general happiness”. [ii] Other health experts agree that “[f]emale sexual dysfunctions (FSDs) are very prevalent, multifaceted problems that continue to be under-recognized and undertreated ”. [iii]
Most healthcare providers do not address FSD with their female patients during regular medical visits. One study concluded that over half of their respondents were not queried about their sexual health during their visit with their practitioner. [iv] In order to investigate this matter further, The Women’s Sexual Health Foundation (TWSHF)designed a survey that inquired about perceptions, emotional responses, and possible discussion of FSD during visits with their medical practitioner. The 18 item survey was posted on TWSHF’s website at www.TWSHF.org. The survey contained demographic information and questions on women's beliefs specific to communication with their provider and care relating to female sexual health problems. A total of 391 women responded to the survey. Women from ages 21 to 80 took the survey, and most of the women were well educated (college or above). According to this study, less than 9% of the respondents stated their healthcare provider always initiated questions about sexual health difficulties during an annual office visit.
The results of this survey raised other questions relating to diseases, sex hormones and sexual dysfunction, such as the impact of adjuvant hormonal therapy and chemotherapy on sexual function in the breast cancer patient. For many, breast cancer is a chronic disease with approximately 2,533,193 breast cancer survivors alive as of January 1, 2006 in the United States according to the National Cancer Institute data. However, one consequence of cancer treatment that is often not discussed with cancer survivors is that of sexual function and intimacy. Research shows that sexual dysfunction after various cancer treatments can range from 40% to 100%. [v] Approximately 50 % of female breast cancer survivors have long lasting sexual dysfunction. [vi],vii
Cancer and cancer treatments such as chemotherapy and adjuvant hormonal therapy can impact a woman’s ability to enjoy sex. These treatments can cause various side effects from low desire, decreased arousal, urogenital atrophy, and vaginal dryness that leads to painful intercourse and even vaginal bleeding. viii Although sexual dysfunction as a result of vaginal dryness and dyspareunia is a common complaint of women who have experienced chemotherapy-induced menopause and those women who are receiving adjuvant hormonal therapy such as aromatase inhibitors and tamoxifen, there is no consensus as to whether vaginal estrogen products are safe to use in breast cancer patients with estrogen receptor positive tumors. Healthcare providers will recommend lubricants and non-hormonal vaginal moisturizers as a first line therapy, but these products are not always effective in this patient population. There is a concern that it may be unwise to use topical vaginal estrogen in women who are taking aromatase inhibitors where such concerns have not been raised in non-breast cancer patients. ix
In the study by Kendall and his colleagues ix, they found Estradiol levels increased from a mean baseline level of 5 pmol/l to a mean of 72 pmol/l at week 2, and then decreased at week 4 to a median of 16 pmol/l after the women in the study had been treated with Vagifem, a vaginal estrogen.. Two women had high estradiol levels after 7 weeks in the study. Of concern is whether even minute changes in serum estradiol levels from vaginal absorption of topical estrogen replacement agents increase breast cancer recurrence.
The use of aromatase inhibitors continues to increase and further studies are needed to assess the impact of the use of vaginal estrogens as it relates to the effective and safe management of a woman’s sexual and urogenital health in the breast cancer patient. Funding for such research is needed. These are important questions and women have every right to have them addressed fully with evidence-based research.
What We Hear From Women
We have heard from many women and their partners relating to female sexual health problems. These stories are heart wrenching and have a common theme: women are devastated; suffer in silence; feel very much alone in their journey to find the right answers, care, and treatment; and wish that their sexual health would be taken seriously.
For women who have had cancer, whether breast cancer, gynecological cancer or other cancers, the message that they are sometimes given is that they should be happy that they are alive. Yet the vast majority of these women will struggle with regaining their sexual health due to chemotherapy and adjuvant hormonal treatments. For women in relationships, this impacts not only them, but also their partners who often feel helpless and equally devastated, many times blaming themselves. Partners express the personal and emotional rejection they feel. Some keep this pain to themselves because it appears that there is no help available.
Funding for research studies is needed to address the safety of the use of vaginal estrogens in breast cancer patients, and to understand the impact of sex hormones in women in relationship to cancer treatments and female sexual dysfunction.
About The Women’s Sexual Health Foundation
The Women’s Sexual Health Foundation was founded in 2003 as an international non-profit organization with an Advisory Board of international experts in the field of sexuality and women’s sexual health. The mission of The Women's Sexual Health Foundation is to provide support in the following ways: · Providing educational information on the causes, treatments, and latest research in sexual health issues to women and to healthcare professionals · Supporting a multidisciplinary approach in treating women's sexual health concerns · Offering resources for women experiencing sexual health difficulties as well as for their partners, family, and friends · Advocating funding for research to advance knowledge in sexual medicine · Increasing worldwide awareness on the subject of women’s sexual health
To advance its mission of education and support, The Women’s Sexual Health Foundation maintains a website at www.TWSHF.org with multiple resources including educational brochures in several languages on topics such as the various female sexual dysfunctions, how to speak with your healthcare provider about sexual health, and addressing low desire from a multi-displinary approach. We have co-hosted well attended educational forums with Columbia University College of Physicians and Surgeon as CMEs for healthcare professionals and similar programs for the public. TWSHF presented its first media award in 2009. This award recognized an outstanding media professional whose work has broadened the knowledge and understanding of women's sexual health. The Women’s Sexual Health Foundation collaborates with other patient advocacy organizations on issues related to female sexual health and various female sexual dysfunctions.
[i] Mayo Clinic Staff. Female Sexual Dysfunction. www.mayoclinic.com. Published by the Mayo Foundation for Medical Education and Research. 25 April 2008.
[ii] Sadovsky R, and Nusbaum M. Sexual Health Inquiry and Support Is a Primary Care Priority. Journal of Sexual Medicine. 2006; 3:3-11. [iii] Bachmann G. Female Sexuality and Sexual Dysfunction: Are We Stuck on the Learning Curve? Journal of Sexual Medicine. 2006 July; 3(4): 639.
[iv] Nusbaum M, Gamble G, and Pathman D. Seeking Medical Help for Sexual Concerns: Frequency, Barriers, and Missed Opportunities. Journal of Family Practices. Aug 2002; 51(8): online version.
[v] Derogatis LR, Kourlesis SM: An approach to evaluation of sexual problems in the cancer patient. CA Cancer J Clin 31 (1): 46-50, 1981 Jan-Feb.
[vi] Ganz PA, Rowland JH, Desmond K, et al.: Life after breast cancer: understanding women's health-related quality of life and sexual functioning. J Clin Oncol 16 (2): 501-14, 1998.
vii Schover LR, Montague DK, Lakin MM: Sexual problems. In: DeVita VT Jr, Hellman S, Rosenberg SA, eds.: Cancer: Principles and Practice of Oncology. 5th ed. Philadelphia, Pa: Lippincott-Raven Publishers, 1997, pp 2857-2872
viii Berglund G, Nystedt M, Bolund C , et al. Effect of endocrine treatment on sexuality in premenopausal breast cancer patients: a prospective randomized study. J Clin Oncol. 2001; 19: 2788 –2796.
ix Kendall A, Dowsett M, Folkerd E, Smith I. Caution: vaginal estradiol appears to be contraindicated in postmenopausal women on adjuvant aromatase inhibitors. Ann Oncol 2006;17:584e7