I recently went to Washington D.C. to work with RESOLVE, the National Infertility Association, to participate in their annual Advocacy Day. I got to meet and speak with women from all over the country that are currently struggling with infertility or have struggled with infertility in the past and are now done with their family building journey. What astounded me most was that many of these women had been enduring years of unsuccessful fertility treatments with some of the top specialists in the country and yet the answer their doctors gave them for this misfortune was just “bad luck” or “unexplained egg quality” or “low ovarian reserve”. After speaking with these women for a few minutes, I was shocked to deduce that so many of them most likely had undiagnosed endometriosis. As our conversations unfolded, their eyes grew wide with recognition of all of their lifelong symptoms laid out in front of them. They had no idea these diverse symptoms could all be connected and related to one disease.
After working with Dr. Seckin for the past year and listening to many of his patient’s stories, I have learned that there are “endometriosis red flags” to look for in patients. When I heard patients talk about their multiple failed IVF attempts and how they have suffered early miscarriages, I asked them the following questions and the majority of women said yes to all or most of these symptoms:
- Do you have painful periods and/or painful intercourse? Although many gynecologists/RE’s do ask this question, I think some women do not say yes outright. They may say, “Well my periods are uncomfortable or very heavy, BUT I still can function with over the counter pain medication.” A lot of women do not realize the pain they are in until after they have excision surgery to relieve the pain. Many think their pain is normal. Also, some women with endometriosis do not have painful periods and do not have the obvious symptoms that most doctors can recognize. Painful intercourse is a big red flag for the presence of disease. A lot of doctors fail to ask patients this question and many patients feel that it is irrelevant and do not mention it.
- Do you have stomach issues (diarrhea or constipation) especially around your cycle? Many women have had gastroenterologists tell them that they have irritable bowel syndrome or just a “bad stomach”. Many gynecologists/RE’s don’t even ask about patients bowel issues because they are solely focused on gynecological issues and/or fertility. Interestingly enough, many of the women I speak to naturally cut out gluten and or dairy from their diet without even knowing that is a good diet for endometriosis patients. They will tell me “I used to have worse bowel symptoms, but since I cut out these foods I feel a little better.”
- Do you have a history of UTI’s or frequent urination especially around your menstrual cycle? In all honestly, most women are not that attuned to their urinary symptoms, especially if they are having cramps that overshadow them or are in the middle of fertility treatments. I have women tell me, “I pee all the time, but I also drink a lot of water,” or “I used to get frequent UTI’s when I was younger, but have learned to manage them.” When they actually track their symptoms, they do recognize that they have frequent urination during certain times of the month or remember they had unexplained blood in their urine during their last physical. Many urologists do not think of endometriosis when speaking with a patient. So these symptoms just become another weird quirk about their body they learn to live with.
- Do you have any back or leg pain, especially during specific times in your cycle? When I mention these symptoms, patients are always blown away. They look at me like I must have psychic abilities or have a camera peeking into their lives. They are shocked that these often debilitating leg and back pains could possibly be related to the same disease that could be causing their infertility. I hear about how they have been to neurologists and orthopedic surgeons, none of whom could cure their pain or really even find a cause for it.
- Finally, do you have a family history of endometriosis or have family members that have had unexplained bad periods, early hysterectomies, infertility or pregnancy losses? It is shocking the amount of patients that have family members come to mind when they take the time to think about their family history. The fact that endometriosis can be passed down from one generation to the next is a big problem. When your mom, and your mom’s mom and your aunts all had painful periods, it seems normal. Doctors often don’t think about endometriosis as being genetically linked the same way they do with breast or ovarian cancer. If a patient is having unsuccessful fertility treatments and has a family history of endometriosis, there is a good chance that maybe the patient has endometriosis that is impacting fertility.
It is so disheartening to hear women speak about the years they have suffered and the treatments they have endured with no success and seemingly no reason for feeling the way they do. Dr. Seckin believes an early diagnosis and intervention with a skilled excision surgeon can not only make a huge impact in a patient’s fertility, but in their overall quality of life. I am not a doctor and do not have a medical background, but I have learned so much from working closely with Dr. Seckin, speaking with patients, attending the Endometriosis Foundation of America’s Medical Conferences and by being a part of the greater community. If I can learn how to suspect endometriosis in five minutes and encourage patients to go for further evaluation with an excision specialist, the greater medical community can certainly learn how to identify these symptoms as well. We need doctors in all disciplines to “think endometriosis” and help patients get diagnosed sooner.
Casey Berna is a patient of Dr. Seckin’s and an endometriosis and infertility counselor and advocate. To learn more about her story and her practice go to www.CaseyBerna.com. If you are a patient of Dr. Seckin’s and want to share your story please contact Casey at firstname.lastname@example.org.