A Q&A With Dr. Seckin

On March 21st, My Endometriosis Team’s Ta-Tanisha Williams spoke to Dr. Tamer Seckin on various aspects of endometriosis including deeper debilitating pain and treatment. The talk was during a series of endometriosis lectures organized by The Endometriosis Foundation of America (EndoFound) and My Endometriosis Team as part of Endometriosis Awareness Month.

Dr. Seckin’s long-standing interest in endometriosis

Dr. Seckin trained at the University of Buffalo and has been working in Lenox Hill Hospital in New York City for the past 30 years.  He began focusing on endometriosis in 1990 at a time when there was still surprisingly very little information on endometriosis. Dr. Seckin reminisced about that time and sadly, the misinformation surrounding the disease.

“The most common prevalent matter of discussion was always pelvic pain . . . it was the belief of some sort of occult infections”. Dr. Seckin said.

Misdiagnosis as sexually transmitted diseases

In those times, doctors mostly thought that pelvic pain occurred due to sexually transmitted infections (STIs), such as chlamydia or gonorrhea.

“Hey, come on. I haven’t been with someone,” or, “I am with one partner.” Well, the conversation always came to a certain point”, Dr. Seckin said.

When tests and cultures turned out to be negative, Dr. Seckin began questioning this long-held belief by many gynecologists at the time. Even in academic textbooks, endometriosis barely appeared next to the treatment of gynecologic infections.

Lesion excision led to symptom alleviation, Dr. Seckin saw

Dr. Seckin believed his patients and believe that STIs were not the cause of endometriosis and pelvic pain. This led him to look deeper into the disease and it soon became a lifetime passion for him. He observed that removing these lesions resulted in symptom alleviation and a marked improvement in the quality of life of his patients.

“They were thanking me. I think that thanking (and) being thanked is something that’s really incredibly and drives us forward,” Dr. Seckin said.

Dr. Seckin meets Dr. Harry Reich

Dr. Harry Reich was the pioneer of laparoscopic hysterectomy (removal of the uterus). Dr. Seckin, after a brief stint as a vascular and general surgeon, met Dr. Reich and began to train in minimally invasive techniques such as laparoscopic surgery. Over the years, he developed his own techniques surrounding endometriosis surgery.

Dr. Seckin’s EndoFound — The beginnings

Dr. Seckin felt that there should be a forum for patients to speak about their experiences with endometriosis to remove misinformation and associated stigmas. EndoFound began with six of his early patients.

“I wanted to give the microphone or the mouth piece to people who have the disease and start talking about it”, Dr. Seckin said.

Initial activities of EndoFound were quite limited and even celebrities who received treatment for endometriosis did not want to be the voice or face of endometriosis. Padma Lakshmi was one of the first of Dr. Seckin’s patients to speak openly about her own experiences with endometriosis in a large public space. She spoke about how even the best doctors at top-tier institutes had failed to help her. 

Padma was soon accompanied by other notable names including Whoopie Goldberg, Susan Sarandon, Lena Dunham, and Amy Schumer. Information about endometriosis is now being more effectively disseminated thanks to the help of these women. 

“People believe in their stories in a different way. So many people follow them.”, Dr. Seckin said.

These women, along with Endofound, have worked to remove stigmas and taboos associated with endometriosis and menstruation in general.

Dr. Seckin talks about the causes of endometriosis

Citing Ta-Tanisha’s own example, Dr. Seckin said that her period pain at 13 could have been a possible indication of endometriosis. Adolescent endometriosis is a reality, but it requires a more comprehensive evaluation and means more than just “painful periods”. At this age, parents have a crucial role in talking to their daughters and opening lines of communication with them regarding pain symptoms.

“The role of mothers is crucial here… We’ll do our best. But awareness of mothers is the key,” Dr. Seckin said.

He stressed the importance of having the right attitude to understand endometriosis and associated pain. Pain can be due to many reasons. It could be due to the uterus trying to expel blood, a tight cervix, maturation during the development of secondary sexual characters, and so on.

There are many theories that try to explain the origin of endometriosis, but the most accepted one is Sampson’s theory of retrograde menstruation.

Dr. Seckin has observed endometrial blood, even as old as three weeks old, “swimming inside” various tissues. In some women, blood clears and is reabsorbed into the body without issues. For others, the amount of blood can be more than the body can easily clear and it will sit in the abdomen, causing pain during menstruation and even after. Endometrial blood and lesions can be quite adhesive and have a higher survival tendency than normal.

Dr. Seckin also notes that although birth control can help stop ovulation and reduce bleeding, it does not primarily actually treat endometriosis.

Embryological and genetic origins of endometriosis

There are also theories pointing to an embryological origin of endometriosis. Biopsies have revealed endometrial lesions from ectopic Mullerian tissue, which is present from birth, Dr. Seckin explained. 

“And trust me, the autopsies that’s done on, on newborns, they say that they could be endo. It is true,” Dr. Seckin said.

Also, congenital uterine anomalies such as arcuate uterus have been associated with an increased prevalence of endometriosis. This may be secondary to abnormal peristalsis of the uterus and increased retrograde menstruation.

The most advanced cases of endometriosis tend to happen around the age of 30. Though a possibility, Dr. Seckin said that he hasn’t seen a case of, say, advanced thoracic endometriosis at the age of 15. This means that endometriosis tends to follow a slow progression.

Dr. Seckin also recognizes that there is some multifactorial genetic basis for the disease. We know that a patient is more likely to have endometriosis if their sister or mother also has the condition.

Deep endometriosis and pain

Dr. Seckin said that pain is the main way of knowing that there’s underlying endometriosis. He said that he questions his patients on how much pain they are experiencing, where it occurs, and how long it typically lasts. 

“I would be asking your level of how would you scale your menstrual pain out of 10. 200! People say 200, I’m on the floor,” Dr. Seckin said.

Pain that lasts more than two days is not normal and so is pain that continues after the period stops. Pain that occurs due to peritoneal endometriosis also usually involves the bowels. Depending on symptom progression and site of lesions, pain could be uterine, peritoneal, or retroperitoneal. Deep endometriosis is characterized by lateralizing pain.

“It’s more on my left side, I have it on my leg, front back sciatica, or groin area or vulval area. That’s deep endo,” Dr. Seckin said.

There’s also deep infiltrating endometriosis wherein symptoms such as constipation are observed indicating that lesions could have penetrated the bowels. Symptoms such as pain during intimacy and pain during orgasm are also tell-tale signs of deep endometriosis. This is not to be confused with vaginismus, which denotes the squeezing of vaginal muscles or spasms during penetrance. 

“Males have to be educated recognizing the agony of pain versus pleasure,” Dr. Seckin said.

Other symptoms to note include pain in the bowels, shortness of breath, and chest pain during periods. These symptoms flaring up during periods almost certainly mean that the underlying disease is some form of endometriosis.

Dr. Seckin’s advice for the community

Dr. Seckin strongly advises that pain should not be taken lightly, especially if it coincides with menstruation.

“Let nobody fool you. If you have menstrual pain beyond two days and it’s not alleviated with regular Tylenol and things like that, please be aware that other symptoms should be in your mind,” Dr. Seckin said.

It is important to see how the symptoms progress, whether they are affecting the bowels and whether they flare up during periods. 

Dr. Seckin recommends not believing doctors who may diagnose it as every other condition. Early diagnosis combined with proper intervention such as laparoscopic deep excision surgery can prevent furthering of deep endometriosis and later complications such as infertility. 

Some patients may have silent endometriosis and may well go on to have children even though they remain asymptomatic. However, it is important not to neglect it since any advancement in later stages followed by surgery can still leave scarring and increase healing time.