The following release was issued by the Endometriosis Research Center and is reproduced in full here. In reference to the endometriosis research, and associated results, carried out by Dr. Kliman and his Associates. We have several misgivings regarding this particular study. Indeed, our concerns are shared by a great number of persons within the Endometriosis community, particularly in light of the manner in which the results of this study were adapted and reported by mainstream media on a widespread basis immediately following release of the report. Similar reservations have been also voiced by the Endometriosis Association, whose own members were used for this study [see http://endometriosisassn.org/sex.html for details]. Women and adolescents with this disease are already acutely aware of the cavalier attitude with which Endometriosis is regarded - as a largely insignificant condition shrouded in myths and misinformation; it is viewed as "a disease of primarily middle aged career women; it can be cured by hysterectomy/pregnancy; it does not generally cause pain;" etc. Then comes the latest hindrance - news that Endometriosis can be helped - and perhaps even prevented, some would interpret - by such simple measures as having intercourse during menses and/or wearing tampons.
We are familiar with the 1996 ASRM report by the same authors ["A History of Frequent Orgasm or Tampon Use During Menses Protects Against Endometriosis;" Kliman HJ, Meaddough EL, Olive DL; American Society for Reproductive Medicine, Boston, 1996]. At that time, then-current research findings were examined and cited in the paper. Six years later, while many advances have been made in Endometriosis investigations and treatment, the documents used to cite references in this parallel study remain woefully dated; some as early as 1927, none later than 1996. We are disappointed to note that more timely data was not included, such as that presented at the proceedings of the recent World Congresses on Endometriosis.
While we do not question the validity of the investigation, we do question the particulars upon which the initial assumptions were based. For example, Sampson's Theory of Retrograde Menses (circa 1927) is no longer "widely accepted" as playing an important role in the etiology of the disease. In truth, Sampson's Theory is indeed flawed [Redwine, 1995] on many points, including its failure to account for extrapelvic Endometriosis and the rare presence of disease in males [AmSurg 1985 Jul;51(7):426-30 (ISSN: 0003-1348) by Martin JD Jr; Hauck AE; "Endometriosis of the Male Urinary System: a Case Report," J Urol 1980 Nov;124(5):722-3 (ISSN: 0022-5347) by Schrodt GR; Alcorn MO; Ibanez J; "Endometriosis of the Urinary Bladder in a Man with Prostatic Carcinoma," Cancer 1979 Apr;43(4):1562-7 (ISSN: 0008-543X) by Pinkert TC; Catlow C; Straus R; "Endometriosis of the Bladder in a Male Patient," J Urol 1971 Dec;106(6):858-9 (ISSN: 0022-5347) by Oliker AJ; Harris AE]. Genetic makeup [Bulun 1997], immunology [Dmowski et al] and heredity [Kennedy et al] are all more likely to play roles in disease origin. Dioxin, the significance of which was discounted in the report, may well also play an important role in disease etiology.
Contrary to some positions on the topic, it has been exhibited by the ERC in our testimony before the California State Legislature concerning Assembly Bill 2820 [Cardoza, D-Merced] that time and again, feminine hygiene products (i.e. tampons) do indeed test positive for Dioxin. Dioxin, in turn, is a well-documented catalyst for Endometriosis - and the effects of Dioxin are cumulative; able to be measured as much as 20 or 30 years after exposure. Tampons come in direct contact with some of the most absorbent tissue in a woman's body and risk exposing her to a hazardous toxin which can cause severe reproductive and developmental problems (at levels 100 times lower than those associated with its cancer causing effects); immune system damage; and interference with her regulatory hormones. In one related study, authors noted "accumulating data linking Dioxin to Endometriosis in humans." ["Dioxin Concentrations in Women with Endometriosis,"Hum Reprod 1997 Feb;12(2):373-5 (ISSN: 0268-1161); Mayani A; Barel S; Soback S; Almagor M, Department of OBGYN, Bikur Cholim Hospital, Israel]. In another study, authors demonstrated the expression of "Dioxin-related transcription factors aryl hydrocarbon receptor and aryl hydrocarbon receptor nuclear translocator protein and target genes CYP1A1, CYP1A2, and CYP1B1 in endometriotic tissues and stromal cells." The report goes on to conclude that "strikingly elevated CYP1A1 transcripts in Endometriosis may give rise to significantly increased P-4501A1 enzyme activity and thus promote the development and growth of Endometriosis by either activating procarcinogens or inducing the formation of catechol estrogens or both. In fact, the proposed link between Dioxin exposure and Endometriosis may be explained in part by the up-regulation of the CYP1A1 gene expression in endometriotic tissues." ["Expression of Dioxin-Related Transactivating Factors and Target Genes in Human Eutopic Endometrial and Endometriotic Tissues," Am J Obstet Gynecol 2000 Apr;182(4):767-75 (ISSN: 0002-9378); Bulun SE; Zeitoun KM; Kilic G, Department of OBGYN, University of Illinois at Chicago, USA].
Still more timely evidence exists. In "Exposure Assessment to Dioxins From the Use of Tampons and Diapers," authors noted that while Dioxin exposure through tampons and diapers does not significantly contribute to Dioxin exposures in the United States, their assessment of four brands of tampons and four brands of infant diapers obtained from commercial establishments in San Francisco, California revealed that Dioxins "were present at detectable concentrations in all samples." [Environ Health Perspect 2002 Jan;110(1):23-8 (ISSN: 0091-6765); De Vito MJ; Schecter A, National Health & Environmental Effects Research Laboratory, Office of Research & Development, U.S. Environmental Protection Agency, Research Triangle Park, North Carolina, USA].
In "Endometriosis in Tampon Users," Roets et al wrote, "recent research indicated that a correlation between the use of tampons during menstruation and Endometriosis exists. It seems that an educational program, by primary health care workers, indicating the potential dangerous effects of tampon use will lower the incidence of Endometriosis, thus the problems with infertility could lesson and optimal health care to women could be improved." [Curationis 1999 Mar;22(1):12-5 (ISSN: 0379-8577); Roets L; van Rijswijck O, Skool vir Verpleegkunde Universiteit van die Oranje-Vrystaat].
All other evidence notwithstanding, this study fails to address 2 key facts known to be true by those who understand this disease the best - the women who live with the illness every day. Simply put, many women with Endometriosis simply cannot bear the pain caused by tampon insertion and wearing. As for sex: painful intercourse is a hallmark symptom of Endometriosis. Nowhere in the "10-15 minute long" survey used to complete this study does it ask women with Endometriosis, "Do you abstain from intercourse and tampon use during menses because it causes pain?" Many women with Endometriosis did in fact engage in both practices at one point in their lives; however, most were diagnosed with the disease prior to doing either, and such practices have had no role in aiding or relieving their symptoms or in preventing the disease. Still others with Endometriosis, who in fact have no pain with intercourse or tampon usage, were diagnosed with the disease regardless of either practice, and do not experience any preventive or symptomatic benefit as a result of engaging in such practices.
For example: it may interest authors to note that in a time-constrained poll conducted on a very small sampling of ERC Members, collected over a 12-hour period, we received the following input:
Preference(s) and experience(s) concerning the use of tampons (feedback restricted to surgically diagnosed patients only):
20.69% of respondents indicated that they have no problem using tampons (any brand/size).
20.69% of respondents indicated that they have never used tampons (any brand/size) and did not expect to at any time in the future.
58.62%, an overwhelming majority, indicated that they had previously used tampons (any brand/size) and discontinued usage because they caused the patient too much pain and/or discomfort.
Preference(s) and experience(s) concerning intercourse during menses (feedback restricted to surgically diagnosed patients only):
25.00% of respondents indicated that they have engaged in intercourse during menses with no pain.
33.33% of respondents indicated that they have not engaged in intercourse during menses, and are unlikely to do so in the future.
41.67%, an overwhelming majority, indicated that they have engaged in intercourse during menses, but that doing so caused significant enough pain and/or discomfort to prevent them from doing so again.
In summary, the preponderance of the women (ages 20-40) we surveyed had at some point in their lives engaged in intercourse during menses and worn tampons. The pain and discomfort from doing so were enough to make them stop such practices. Again, we would point out that all of these respondents have been surgically diagnosed with Endometriosis.
While the complete study report does indeed address the potential role of unasked confounders such as the concepts outlined above, it is highly unlikely that the general public, and even many physicians, will access the complete report, relying instead upon such enthralling headlines as "Use of Tampons and Sexual Activity Protect Women Against Endometriosis" and "Women who Engage in Sexual Activity or Use Tampons While Menstruating Seem to Lower Their Chances of Developing the Painful Condition Known as Endometriosis" to make their treatment choices and recommendations. Many will likely not even consider that the women who engage in such practices do so simply because they can - yet many with Endometriosis cannot. Like so much concerning Endometriosis, yet another enigmatic question looms: do painful symptoms of the disease occur because women with Endometriosis do not wear tampons or engage in intercourse during menses, or do those women not wear tampons or engage in intercourse during menses because they have Endometriosis and painful symptoms prevent them from doing so? This particular study does not adequately address this concern enough to arrive at any specific conclusions. While the report itself acquiesces this point within the complete discussion, the ensuing media commentary does not; preferring rather to convey a seemingly definitive message from authors that such measure are indeed protective/preventive.
It is our strong opinion that advising the female public, particularly those already diagnosed with Endometriosis, to subject themselves to painful (and in certain cases, potentially dangerous) activities borders on the side of negligence. Indeed, while this study "raises interesting issues deserving further investigation," it is unfortunate that it was released and quickly promulgated before additional, in-depth and conclusive investigations on the topic were performed.
