I have had endometriosis for 20 years. Maybe you never have heard the name of the disease before. If I say chocolate cyst, this may be familiar to you. Endometriosis is a disease in which the endometrium, which usually lines the uterus, grows on the outside of the uterus. Endometriosis affects one in 10 women of reproductive age and approximately 2 million women in Turkey have the disease. It can be seen in a young girl going to high school, or in a woman at an age of 35 who does not have a child. Unfortunately, the average duration of the diagnosis is 8 years, consider that you have complaints, but it is not possible to find out what it is or is confused with other diseases. As the diagnosis is delayed the treatment of the disease is also delayed and the disease progresses.

I was in my fifteens and I was very excited like every little girl for the day that I will enter adolescence. From the beginning of my first menstrual day, I almost always had painful experiences in the initial days of my every menstrual period. I had difficulties going to school, concentrating on lessons, sleeping in comfort. I felt tired and exhausted. I was having heavy menstrual bleeding. I was constantly asking to my girl friends “don’t you have pain? Why are you not like me? ” Some of them told that they don’t even understand how these days start and end. Some of them said that during the initial days they have some difficulties. My mother and my grandmother said that they both had the same experiences before they got married and after some time their complaints disappeared and everything was normal. I must have been sick and I couldn’t take care of myself well enough and it would be over when I get married. When I was in high school, I visited several doctors and I got ultrasonography and there was not any problem that could be detected. Everything was all right and the doctor said that at these ages this kind of things can happen.

In some periods my complaints reached peak level but nothing was found in routine controls until at an age of 26. Then one day my pain suddenly became unbearable and I had to go to emergency. Doctors told me that I have a cyst of 7 cm in my ovary. I visited a few ob-gyn specialists and I had an immediate operation in 2007. The cyst was removed and I was recommended to get married as soon as possible and have a child. But there wasn’t even a candidate for marriage. After the operation my complaints were not over, anemia, fatigue,painful menstruation, and painful defecation… I couldn’t go to my work at least one day in every month.

I got married approximately one year after the operation. I couldn’t get pregnant spontaneously. My hormone test results were not well enough. My oocyte quality and pregnancy rates were low. Endometriosis is a chronic disease having an impact on infertility besides the pain and other symptoms. It had this effect too.

Even it decreases your quality of life, of course it is possible to live with endometriosis and every patient has a different history. You should not neglect your regular checkups like in every  chronic disease. You should pay attention to your doctor’s recommendations and use the medication regularly that your doctor recommends. To avoid processed foods, have a balanced diet, make an endometriosis diet, do yoga and pilates are the things that reduce the side effects.

If you, your child or your relatives have one or more symptoms including painful menstruation, painful sexual intercourse, painful urination or defecation, gastrointestinal problems, fatigue, exhaustion, infertility you should refer to a gynecologist. Explain your complaints one by one and be decisive, because pain level is different in every person and they can be unable to understand you. Don’t give up, be decisive.

In Turkey there is an association founded by ob-gyn specialists in 2009. Turkish Endometriosis and Adenomyosis Society. I have been informed by my doctor about the presence of such an association and the activities it carries on. I’m a part of this association since last year. Since our association was founded in 2009, it hosted several national and international meetings. It has taken part in meetings and congresses worldwide. Besides academic studies, it has taken part in some activities to reach the patient, patient’s relatives and every part of the society. First activity organized by the association was “Bursa Eker I Run” run in 2017. A special stand was set up during the race and young physicians took part in this stand to raise public awareness. Some of our professors participated in the race and gave support. Then volunteer young physicians who attended the Eurasian marathon in Istanbul on behalf of our association tried to draw attention to the chocolate cyst. T. C. Ministry of Health Istanbul Public Health Directorate Child, Adolescence, Women and Reproductive Health Services Unit together with Endometriosis and Adenomyosis Association provided “Endometriosis -Chronic Pelvic Pain-Dysmenorrhea" training to approximately 200 family physicians. This year meetings were held in Antep and Kayseri to inform physicians and health workers, and to be able to handle and thoroughly examine endometriosis in all its aspects. In addition to these activities, the chocolate cyst information videos prepared by our association for the "march endometriosis awareness month" organized every year in the world took part in the press and our social media accounts.

If you are willing to support Turkish Endometriosis and Adenomyosis Society and make a contribution to awareness studies, you can email info @endometriozisdernegi.org or call 05325156999.

You can get detailed information about endometriosis by following the www.endometriozis.org website, which is the website of the association, and social media accounts, you can watch videos informing physicians, and share your story. We look forward to your support.