A disease with severe pain and delayed diagnosis: It can take 7-10 years to get diagnosed

As part of March-Endometriosis Awareness Month, an event titled "The Usual Suspect: Endometriosis" was held at Acıbadem Altunizade Hospital.

The discussion held during the event was moderated by presenter and television personality Esra Erol. Prof. Dr. Taner Usta, an Obstetrics and Gynecology Specialist at Acıbadem Altunizade Hospital, provided important information regarding this serious and significant disease, which can progress from infertility to kidney loss due to years of undiagnosed status, as well as the latest treatment methods.

Patients also sincerely shared their experiences with late diagnosis, severe pain, and their challenging journeys.

(Prof. Dr. Taner Usta: “The disease affects 1 in every 10 women”)

Obstetrics and Gynecology Specialist Prof. Dr. Taner Usta stated that endometriosis, a very common disease worldwide, can take many years to diagnose, and said the following:

“It is a significant disease because it involves the inner lining of the uterus settling where it shouldn't, particularly in the ovaries and sometimes in neighboring organs, which can lead to very severe pain, cause infertility, and emerge when women are in their 20s and 30s. We are talking about a risk that affects 1 in 10 women. It is very important to go to an obstetrician for check-ups, and if there is any suspicion of chocolate cyst disease, it is crucial to be seen by an obstetrician who specializes in this area. As the disease progresses, it affects many areas, including the uterus, tubes, and ovaries. Our job is very difficult with this group of patients. In fact, the most important goal of these awareness events is to ensure early diagnosis and not miss the window of opportunity for treatment.”

Stating that the pain caused by endometriosis can also be seen in other diseases, Prof. Dr. Taner Usta emphasized that this is why there can be delays in diagnosis:

“Abdominal pain can be seen in many diseases. For example, it can be confused with a herniated disc or irritable bowel syndrome. But if a woman has pain in the pelvic region that is linked to her menstrual cycle or ovulation, endometriosis must definitely be considered. In many cases, that is exactly what we find.”

Prof. Dr. Taner Usta provided the following information regarding treatment: “We benefit greatly from medication in treatment. If endometriosis has reduced the ovarian reserve, we definitely consider and discuss treatment options such as egg freezing or embryo freezing with the patient. Especially if there is very deep involvement, involvement that threatens organs, or a suspicious appearance, we initiate surgical treatment in such cases.”

(Öykü Güncan)
28-year-old Öykü Güncan, a mother of one, said that she was diagnosed with endometriosis during a routine check-up in 2023 while having no complaints, but she did not take it seriously. Güncan, who was taken for emergency surgery weeks after getting married when her chocolate cyst ruptured, said she experienced a great shock during her pregnancy. (Above)

Esra Erol: “We must be able to talk about endometriosis out loud in society”

Presenter and television personality Esra Erol, who moderated the discussion for the second time as part of the event, emphasized that creating social awareness about endometriosis is extremely important.

Erol said:

“We cannot talk about women's health issues very loudly in society. I think this stems from the cultural structure, the place of women in society, and prejudices among the public. Just like with some other diseases, I think we should talk about endometriosis out loud.”

Emphasizing that she takes care to contribute to creating social awareness for this disease that can turn women's lives into a nightmare, Erol continued:

“Given my position, I am happy if we can create awareness about this issue. Because people in the public who do not know about this disease often say things like; ‘Oh, she is so delicate, she is exaggerating her pain a bit, I think your pain has a psychological basis.’ Actually, it is not like that; it is a very serious disease. I think if we talk about this disease out loud and become aware of it, we can ensure early diagnosis and understanding of the process.”

“I was diagnosed in 7 years, I wish I had known sooner”

Speaking at the event, 48-year-old Aygen Yapıcıkardeşler stated that she went undiagnosed for 7 years and was diagnosed with ‘bowel endometriosis,’ which was also seen in her intestine, a year ago. Yapıcıkardeşler, who underwent surgery by Prof. Dr. Usta last month due to a 4.5 cm endometriosis in her intestine, described the difficult process she went through until she was diagnosed:

“About 8 years ago, it was noticed that there was a blockage in my left tube, but no diagnosis was made at that time. I actually heard the word endometriosis very recently. In a check-up I had in December 2024, one of my doctors said, ‘It is a chocolate cyst, but this could be endometriosis.’ To me, it was just a cyst; it didn't mean much, and to be honest, I think I was ignorant about this subject. I said to myself, ‘This word just means cyst,’ and I didn't take it very seriously, but my doctor persisted and called me back for a check-up 3 months later. He tried to understand if I had any other complaints, but I still didn't know as a woman that there was such a big relationship between the uterus and the bowel. My diagnosis was confirmed as Deep Endometriosis, but it was actually bowel endometriosis; yes, there was endometriosis in the uterus, but it had also spread to the bowel. When the diagnosis was made, there was 4.5 cm of endometriosis in the bowel.”

Stating that she is 48 years old and has check-ups every year, Yapıcıkardeşler complained that she could only get a diagnosis a year ago for problems that started 8 years ago:

“In the check-ups I had, it was noticed that my left tube was blocked, but the diagnosis was not made 8 years ago. Therefore, I did not hear the word endometriosis 8 years ago, but in the meetings I had within the last year. As a result of the surgery I had a month ago, it was revealed very recently that the reason my tube was blocked at that time was also endometriosis. Perhaps if it had been diagnosed 8 years ago, a different treatment would have been applied, it wouldn't have progressed to the bowel, and it might have been resolved with medical treatment instead of spreading as bowel endometriosis.”

News Source: 12punto