OBGYN.net: The Universe of Women's Health

Mark Perloe, MD, OBGYN.net Editorial Advisor, delivered the following speech at the Endometriosis Walk For Awareness held in Washington, DC in March, 2000

“I want to thank the organizers for asking me to be a part of this 1^st Annual Endometriosis Walk for Awareness, and I hope that many of you will share the message and share your experience with others and come back for next year’s walk.  I want to start by asking you a few questions.  Have you been told that pain is a normal part of being a woman?  Did it take a long time for your physicians to diagnose the cause of your pain?  For most women, getting a diagnosis of what is going on is an ordeal, this means visits to many physicians over the course of an average of nine years we find out from an Endometriosis Association study before you even learn that you have endometriosis.  Did your doctors tell you that frequently having urinary tract infections or irritable bowel syndrome, symptoms that only occurred with your menstrual period, did they figure out that this may be a sign that there’s endometriosis or did they send you off to gastroenterologists or urologists who said – there’s nothing really going on?  Are your relationships with your spouse or co-workers affected, and do they understand what you are going through and provide the support you need to deal with your symptoms?  Once a diagnosis was made, did you feel that your doctors listened to you and heard your concerns?  Too often physicians have one solution, it will be surgery or it will be medication and you’re expected to fit into the treatment plan that they’re most experienced with.  

Unfortunately for many women, once a diagnosis of endometriosis is made, physicians will attribute all their complaints and symptoms to endometriosis and fail to be diligent in looking for other conditions that may be going on such as appendicitis, nerve entrapment, hernia, muscle spasm, pelvic adhesions, or even cancer.  A recent patient with endometriosis who’d been well controlled had her symptoms completely alleviated for four years with birth control pills following a surgery.  She had seen five or six physicians when her pain came back and was told it was just a recurrence of endometriosis.  Unfortunately, they failed to diagnose her appendicitis that had been smoldering and by the time this was determined, her fallopian tubes had been destroyed.  Another patient who shared her story over the Internet had seen many physicians and was told that her pain was due to recurrent or persistent endometriosis, when in fact, she had an ovarian cancer that was overlooked.  

If you’d answered yes to any of these questions or these stories seem to describe a situation or experience you may have shared, you may be at risk for letting endometriosis own you.  But endometriosis does not have to own you.  Do you bring all your anger from past medical encounters to your visits to a new physician?  Do you already know what you want to do before you hear recommendations from your own physician?  Do you fail to recognize that endometriosis is a chronic condition, and do you believe that maybe if you just find the right doctor your condition would be cured?  Do you fail to include your spouse or partner in your endometriosis support team?  You have two choices, you can let endometriosis control you or you can take control.  I say take control and don’t let endometriosis own you, you can accept and move beyond the anger you feel.  You’ve done that by coming here today.  Don’t let endometriosis own you, you can learn about this condition, and you can learn all you can.  Many of you have been online to receive information but it’s important to validate that information by speaking with your physician or going to sites such as ivf.com, OBGYN.net, and others that will provide information and let you check out the facts that you may hear.  Don’t let endometriosis own you, you can become a partner in that medical care.  Insist on a team approach, your team should include ob-gyn physicians, urologists, GI surgeons, gastroenterologists, pain specialists, general surgeons, and importantly don’t forget to be an active member yourself in this team.  And all these physicians need to talk to one another.  

Don’t let endometriosis own you, develop an endometriosis management plan with your physicians.  Learn about your pain medication options, whether it’s a medication to control pain on a daily basis or what are you going to do Saturday night at 10:00 when you’re in severe pain and your doctor is away on vacation in Washington, maybe speaking, and you don’t know what to do.  Those patients have my cell phone here just in case.  But you have to have a plan to know what to do for those situations.  A management plan should have both short range and long range options.  What are you going to do?  How long are you going to try a given therapy before you know if it works?  What do you do if this treatment fails?  How much does it cost?  Will it hurt?  Will the insurance company pay for it, if it doesn’t, how can I educate the insurance company to look at this and provide the care I need?  What about fertility, too often many of you have heard that if you just get pregnant endometriosis will go away.  We all know that’s not true but it is important to discuss this and make plans and be aware of fertility when considering your options.  Don’t let endometriosis own you, build a support team.  This can include counselors who are trained and understand the condition, and it involves your partners or spouse.  It involves getting involved in an exercise program, learning about nutrition, participating in stress reduction groups, support groups, and online discussions.  But I want to provide caution because the online support groups can provide a forum to share your horror stories but sometimes they fail to empower you or take you the next step beyond the pain that’s so important to manage the condition.  

My son hears me talking a lot about endometriosis at home and on the phone to patients.  When he was in first grade he brought home his first spelling test and showed me that he got a 100%.  He was very proud but I noticed that there were circles all over the page and I said, “Matthew, what is going on?”  And Matthew said, “The teacher circled all the N’s because she didn’t like the way I had written them and she wanted me to turn the paper over and fill the paper with N’s.”  But he said, “I’m not going to do it.”  And I said, “You are Matt, we’re going to take some time,” and we sat down and I watched him as he practiced making his N’s and as the paper was filling, I could see that his mood was degenerating.  He was getting more and more angry, and you know how an 8- or 9-year-old can get when they’re doing something they don’t want to do.  Finally, he turned to me and said, “Dad, I’m not going to do this, I’m dying of N-dometriosis.”  That is a true story.  I’m sure that at times many of you feel that the physical pain, the emotional pain, the treatments you’re getting from your spouse, your insurance company, and your physicians is killing you.  But by attending this walk for awareness, you are taking the first step to insure that endometriosis does not own you.  I want you to leave empowered with positive energy so that you can join with the others here to fight together as a team to find solutions.  I want you to walk away with a new resolve, don’t let endometriosis own you.  Don’t blame everything that’s wrong with you on your endometriosis.  Don’t let endometriosis own you, get the best medical care.  Make your doctor your partner, not your problem.  And for goodness sake, those of you who have to fly on U.S. Air, I’m glad that you’ll be able to find your way home.  Don’t let endometriosis own you - that is what this walk is all about.  Please enjoy the walk and the day here, and thank you so much for coming.”

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