The Facts and Actual Status of Women With Endometriosis In Japan

Masumi INUI
Secretary General
Japan Endometriosis Association
#302, 5-60-2 Nakano, Nakano-ku, Tokyo 164-0001, Japan
Phone/Fax: 81-3-3228-9960

1. Introduction of JEMA

   The Japan Endometriosis Association, JEMA for short, established in July 1994, and founded by five women including myself. It is the only one and non-profit organization for the women with endometriosis in Japan. When we organized the opening seminar, we invited Ms. Mary Lou Ballweg, the President of Endometriosis Association to deliver the lecture for us. She had experienced to carry out 15 years activities in 1994, and we were very encouraged by her activities.

   After that, in October 1996, when the Vth World Congress was held in Yokohama, we organized the public forum with collaboration with EA and also opened the exhibition booth during the Congress.

   As of June 1998 JEMA has 1200 members all over Japan, and one person per day, on the average, is newly applying. We have 30 self-help group meetings regionally. At present, around 30 medical doctors, journalists, and other staffs are supporting and contributing to us, including the leading and promising gynecologists playing the important roles in the Japan Society of Obstetrics and Gynecology, while the famous GPs and specialist who have high regard for women's situation, are also supporting us. And the pharmaceutical companies collaborating with us who total eight as follows; Mochida Pharmaceuticals Co., Ltd., Monsanto Japan Ltd., Nippon Hoechst Marion Roussel Ltd., Takeda Chemicals Industries Ltd., Tokyo Tanabc Co., Ltd., Tsumura & Co., Yamanouchi Pharmaceutical Co., Ltd. and ZENECA Yakubin K.K. They provide us with the information, funds and the chance to exchange information together.

   The revenue and expenditures of JEMA in the fiscal year of 1997 was 8.5 million-yen. One half was composed of the annual fees from individual and supporting members, a quarter was the sales of printed materials, and the contributing funds from the eight companies which was only 3% of the total, was included in the other quarter.

   The basic three activities of JEMA are as follows:

   The first is to compile the information, and supply and share with not only members but also with the public, the second is mutual cooperation such as self-help groups and the third is to give publicity the exact knowledge of endometriosis toward the public at large. Through these three, we are always seeking for the preferable and desirable medical care contributing to women's health.

   2. Achievement of JEMA

   The circumstance for the women with endometriosis in Japan was very bad, when JEMA started to operate, but it has recently been improved by our energetic and effective activities. Before the establishment, we could not have obtained any books about endometriosis for us. So, the only way to get information was asking a doctor in charge. But generally in Japan, since an informed consent had not always been obtained, and consultation with a doctor has been usually only for a few minutes, woman with endometriosis had received drug therapy or surgery according to the recommendation given by a doctor without informing the exact knowledge. Almost all the medical providers treated it as a mysterious disease since the pathogenesis has not yet been elucidated. They often gave the patients incorrect explanation; for example, it would be recovered by childbirth, might be cured by Danazol or GnRHa, or recovered after resection. They are very disappointed to know the recurrence of disease, as they believed to be recovered completely after surgery or pharmacotherapy. Thus, they often changed the doctor in charge; the vicious spiral has been repeated that many doctors could not recognize frequent recurrences in many cases.

   On the other hand, we performed a survey around 700 women with endometriosis in August, 1996, so that we found the real status of medical treatment for them and their daily lives and problems. This was the first and only nation-wide facts - find about endometriosis, and we believe it could not be done by Japanese doctors group but can be only done by JEMA. It was a breakthrough survey, which analyzed the answers for the questionnaires asking 136 queries. It obviously revealed the background and symptoms of women with endometriosis, the diagnoses and treatments by doctors and women's distresses and discomforts after treatments.

   We have issued a bimonthly newsletter, published brochures and booklets, utilized mass media so as to transmit the information to the members and the public. Especially, the best achievement was to publish this book of "The Facts of Endometriosis" in March of 1998. We did write and edit and Dr. Tsutsumi, assistant professor, and Dr. Momoeda, from the University of Tokyo, which is one of Japanese centers for researching endometriosis, were working as medical editors. Most parts of this book contains the detailed and objective medical elucidation, medical situation in Japan, and the analyses and discussions of the important data from 700 women. We showed the facts that this disease can not completely be cured by any medicines or surgeries at present, but also showed the possibility to improve it with sisterhood and to affect the medical fields of obstetrics and gynecology in Japan, in order to prevent from discouraging them. We have actively promoted this book to 16,000 of gynecologists and obstetrician in Japan. We would like to improve the present medical situation provided by the Japanese doctor and staff who have wrong recognition for endometriosis, and we strongly hope that the appropriate diagnosis and effective treatment should be done in near future.

   The key doctors in the Japan Society and conscientious clinicians have recently begun to recognize that the scientific and didactic information of JEMA can help medical doctors in the long run. As a result, we have been invited to attend the Japan Endometriosis Society Meeting and other related research group's meeting since 1997. They have also appreciated to appear in newsletters issued by JEMA, and have begun to listen to the facts reported by us. Furthermore, we were able to insert the recommendations from Prof. Taketani, the University of Tokyo, Prof. Fujii, Kyoto University, and Prof. Hoshiai, Kinki University, who are the big shots in the Japan Society of Obstetrics and Gynecology.

   Moreover, as one of the influence of our positive activities, the endometriosis study group was organized by Ministry of Health and Welfare since July 1997, and they issued the booklet showing the results of study in April 1998. Dr. Momoeda was actually editing it. It contains the statistical study, including the number of patients receiving the treatment in the nation-wide sample hospitals, kinds of diagnosis, and items of treatment. We evaluated it because it was firstly done by the Government for realizing the facts of endometriosis patients. Though it is estimated that 130,000 women are hospitalized or outpatients for endometriosis, the leading doctors of the study group suggest that the number of women affected by endometriosis should be around one million to three million.

   3. The fact of the patient with endometriosis

• considering the two kinds of data of JEMA and the endometriosis study group, Ministry of Health and Welfare.

  The facts-finding survey of JEMA is based on answers from the past to August 1996, while the study group was surveyed in only one month - October 1997. The number of patients was 700 by JEMA and 2,300 by the study group, and the mean age was 35 years in both.

  We have to point out that the confirmed diagnosis such as laparoscopy or laparotomy has not always been done in Japan. Almost all the doctors may use so-called "clinical diagnosis"; inquiry, internal examination, ultrasonographical examination and CA125. The two-third of patients have received Danazol or GnRHa, immediately after the clinical diagnosis. In the data of the study group of the Ministry of Welfare, laparoscopic diagnosis was 16%, diagnosis by laparotomy 20% and the two-third was clinical diagnosis without laparoscopy and laparotomy. By the way, the data from the study group was not discriminated between the patient by clinical diagnosis and confirmed diagnosis, but all the data of JEMA was discriminated between the two. So, our data is regarded as very valuable data in the medical point of view.

  We tried to use the modified JEMA data without discrimination so that we can compare the study group data with the JEMA data. Menstrual pain as the major symptom was the same rate of 88% in both, and ovarian chocolate cyst was also the same at 57%. But, the JEMA data showed higher rate regarding lower abdominal pain, lumbar pain and dysparcunia. These are all the data that we can compare ours with the study group of the Ministry of Health and Welfare, which is not so enough. The data objectively obtained may show almost the same, but the data depending on the doctor's attitude or shame of women make the difference between the two. We understand that the JEMA data may show more real status of the women with endometriosis in Japan.

  Next part is the realistic medical situation in Japan, which Ministry of Health and Welfare have never been known. Please refer to Fig. 1. It is one of the most important in our survey that the results after treatment evaluated by the recurrence rate after the treatment. In 703 patients, one group of the 325 patients was received "confirmed diagnosis" by laparoscopy or laparotomy. The results were that 17% recurred at the first menstruation after the treatment, 45% recurred within half of the year, 17% within one year, 9% within two years and only 13% of the patients answered no recurrence more than two years. Another group of the 378 patients was received "clinical diagnosis" instead of "confirmed diagnosis". The results after treatment were seriously worse.

Fig. 2 shows the results from the patients who received the treatment with expecting to be pregnant. In case of confirmed diagnosis, only 16% could have a baby, 8% was resulted in and abortion, 76% could be pregnant.

These two Figures represented the average of the medical situation in Japan. Only 13% did not recur for about two years, and only 16% could birth baby, who had expected to be pregnant by treatment. This survey was done two years ago, I hope that the present results should be better. Why the results after treatment were so poor in Japan? Firstly, less than one third if the hospitals in Japan has accurate techniques and sincere attitude for the confirmed diagnosis of endometriosis. Especially, there are not so many doctors who can sufficiently undergo laparoscopic surgery in Japan. Dr. Momoeda is one of these reliable doctors. Secondly, clinicians tend to administer several courses of drugs usually without considering adverse effects, and they miss or delay the appropriate timing of the surgery. This kind of situation is not characterized for endometriosis, but it is general problem of medical care in Japan. Thirdly, we can find only few clinicians and researchers who are challenging to clarify the pathogenesis of endometriosis which have not been elucidated for a long time.

Here, I want to refer to Oriental Medicine, which is similar to Chinese Medicine as alternative therapy. One is herbal compound called Kampo drugs, and another is the combination of acupuncture and moxlbustion. In our data, 50% are using Kampo formula and 15% are using acupuncture. And I am also utilizing both of them. In Oriental Medicine, the diagnosis is very unique, using SHO and I have no time to explain in detail. Anyway, the contribution of Kampo or acupuncture can not be disregard, and they may have the effects of improving some symptoms of endometriosis.

4. Endocrine-disrupting chemicals

Japanese people have recently been concerned with pollution by dioxin. The anxieties such as contaminants of breast milk and embryo have rapidly spread since early 1997. Addition to it, we have been sensitive to environmental endocrine disrupting substances. The government of Japan has just started to investigate biological influences of various pollutants including dioxin, and two Ministries and two Agencies have just organized a study group respectively. Especially, Environment Agency remarked that the results of experimental study showing the relation of dioxin and onset of endometriosis in Rhesus monkeys, as already all of you know. However, Japanese women have been so nervous because mass media have been sensationally propagated. We are now expecting to know influences of dioxin and endocrine-disrupting chemicals in endometriosis in the scientific sessions of VIth World Congress.

5. Future prospective of JEMA

Future prospective of JEMA is now considering as follows:

1. We would like to improve the Japanese situation of medical care for endometriosis, utilizing the valuable book of "The Facts of Endometriosis".
2. We are now promoting an effective support and education program for women with endometriosis, because they have several problems other than medical treatment.
3. We would like to eliminate a prejudice or discrimination for women with endometriosis by developing the knowledge of this disease to the public.