Endometriosis, as far as I knew, was something older women may experience. Statistics and facts about "female issues" are not always openly discussed in the same way as other medical conditions. This is why I was surprised to hear from a young friend who was diagnosed with Stage 4 Endometriosis, after years of doctors visits that never gave her an answer for her difficulties and pain.
The only reason her endometriosis was finally diagnosed was due to my friend's persistent advocacy for herself. She did research on the symptoms her doctor was brushing off, and then demanded a laparoscopy that, begrudgingly, her OB/GYN finally agreed to. During the procedure the doctor discovered that her bladder, uterus, rectum and colon were all scarred together from years of the disease. It was so advanced, her ovaries, fallopian tubes, cervix, uterus and appendix had to be removed. Her OB/GYN could not perform the surgeries needed to handle such an advanced case, and my friend was again forced to advocate for herself, and find a specialist.
Thankfully, she found Dr. Eric Heegaard. In six months she has undergone three surgeries, and there are potentially more on the horizon, but she is finally with a physician who understands endometriosis. In hopes of alerting an unsuspecting population of young women about endometriosis, I had the honor of interviewing Dr. Eric Heegaard.
Erin: Thank you for agreeing to talk with me Dr. Heegaard. Let's start off with signs and symptoms women should be aware of. What is normal? What is an alert to an issue?
Dr. Heegaard: Erin, thank you so much for giving me the opportunity to comment on one of the real tragedies of gynecology. One of the messages that I try to get out to my patients is that painful periods which are severe enough to keep girls/adolescents/women from engaging in normal activities, are not normal. Painful periods are the hallmark symptom of endometriosis. Yes, many women have some cramping and discomfort with periods, but, if they interfere with normal activities, she needs to be evaluated. Aside from painful periods, other common symptoms are painful intercourse, and occasionally painful bowel movements, and painful urination. Heavy periods are not uncommon as well.
Erin: From the young patients you have seen, what are the misdiagnoses they often receive before finding you?
Dr. Heegaard: The most traffic diagnosis is the "lack there-of," meaning it is just chalked up to normal menstrual cramping. The girl is told that she is exaggerating her symptoms. In short, the double, or in my opinion, the triple tragedy is that the condition is not diagnosed and therefore the opportunity to intervene early when it is most successfully treated is missed.
The young women is told that her symptoms are not real, in essence, that she is looking for attention and has a poor pain tolerance (which in reality is the opposite of the truth).That this is occurring in our adolescent girls, at a time when so much is changing, and there are so many societal and social pressures they are having to cope with.
Erin: What happens if endometriosis is not treated early and properly?
Dr. Heegaard: Endometriosis is a progressive condition. If it is not identified and correctly treated it can lead to worsening pain, chronic pain syndromes, infertility, and real social dysfunction. These women may have difficulty maintaining jobs and relationships and often feel socially isolated and misunderstood.
Erin: What are the treatments?
Dr. Heegaard: The most important thing that a woman can do is find a doctor/practitioner who has experience with endometriosis. This will ensure that she is getting the most up-to-date treatments, including social support from a community which understands her. Treatment options range from medial (as simple as birth control pills), to complex excisional surgery. The most important point, in my opinion, is that a young woman and/or her family needs to self advocate. If she, or her family, believes she has symptoms suggestive of endometriosis, she needs to see a specialist.
Erin: What questions should a young woman ask her doctor if she suspects endometriosis?
Dr. Heegaard: This is a wonderful questions and touches on many of the points I made above. I would do research before even seeing the doctor, so that you can be informed. If it comes to surgery, I would ask if the doctor has experience dealing with endometriosis surgery? How many cases has he or she done? Does she/he have experience with dealing with endometriosis of the bowel or bladder? In short -- experience, experience, experience.
Erin: Are there support groups in place for women dealing with this issue?
Dr. Heegaard: In Minneapolis/St. Paul, where I live and practice, we have a wonderful support group in town called Endo Support. Many communities have local support groups. A superb national site is a Facebook group called Nancy's Nook Endometriosis Support. Nancy is a retired nurse who had endometriosis herself and then spent much of her career working with Dr. Redwine, one of the pioneers of modern endometriosis treatment. Nancy is totally committed to spreading the most up to date information on endometriosis. This group is a absolute go-to site. Other great resources are The Center for Endometriosis Care, The Endometriosis Foundation, and The Endometriosis Association. Each of these organizations have doctor recommendations, and are wonderful resources for self education. Also, I host a Radio Show "The Gyno Show" on My Talk FM which aires on Sunday Nights from 7-9 in Minneapolis MN. It can be listened via live streaming, and through podcast. I speak about endometriosis frequently. It is a call-in radio show where we talk about topics which are not generally discussed over cocktails and spinach dip. Funny and informative. We also have the Gyno Show Facebook group.
Erin: Are there any other points you would like to include?
Dr. Heegaard: If anything I would again espouse the importance of self advocacy and insisting on being evaluated and treated by a doctor/practitioner with experience in this area. Do not let someone down-play your pain and minimize it, or you. In my experience, women who suffer from this dreadful condition are among the most impressive of all my patients because, in contrast to what they have been told, they have high pain tolerance and are amazingly functional given that they hold down their jobs, care for their friends and families, maintain their relations but they have pain, all the time. Many of these women function with a level of pain which would incapacitate the rest of us if it were for some reason thrust upon us. It is my life's work to spread this one simple message: If you have periods which are painful enough to keep you from engaging in normal activities, this is not normal! Get in an be evaluated for endometriosis. A second message would also be "sex should not be painful." IF it is, get in and get evaluated for endometriosis.