From Endojourney (http://endojourney.wordpress.com/2009/05/02/do-you-have-endo-heres-a-checklist/):
Review the following questions and consider if they apply to you.
Print this page, fill in the appropriate answers, and take this sheet to your gynecologist for further discussion.
_____ _____ Do you experience so much pain during or around your period that you find yourself unable to work, attend school or social functions, or go about your normal routine?
_____ _____ Do you have any relatives that have been diagnosed with Endometriosis?
_____ _____ Do you find yourself with painful abdominal bloating, swelling or tenderness at any time in your cycle?
_____ _____ Do you have a history of painful ovarian endometriomas (“chocolate cysts”)?
_____ _____ Do you have a history of miscarriage, infertility or ectopic pregnancy?
_____ _____ Do you experience gastrointestinal symptoms during your cycle, such as nausea or vomiting and/or painful abdominal cramping accompanied by diarrhea and/or constipation?
_____ _____ Do you have a history of fatigue and/or a lowered immunity (i.e., “sick and tired” all the time)?
_____ _____ Do you have a history of allergies, which tend to worsen around your periods?
_____ _____ If you are sexually active, do you experience pain during sexual activity?
_____ _____ Do you suffer from any other autoimmune diseases (i.e., thyroid disease, rheumatoid arthritis, lupus, fibromyalgia, or multiple sclerosis)?
_____ _____ Have you ever undergone pelvic surgery like a laparoscopy, in which Endometriosis was suspected but not definitively diagnosed?
If you have answered “yes” to any of these questions, you could have Endometriosis.
Know the Facts:
Endometriosis can affect women and teens of all ages, even those as young as 10 and as old as 85.
Hysterectomy, menopause and pregnancy are NOT cures for Endometriosis; in fact, there is no definitive cure.
Delayed childbearing is NOT what causes Endometriosis; in fact, no one really knows for sure what causes the disease, but research points to multi-factorial origins like heredity, immunology and exposure to environmental toxicants.
Endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive.
GnRH therapy like Lupron should never be administered in those patients under 18 or before a surgical diagnosis.
Another good checklist is provided by the Endometriosis Foundation of America here: http://www.endofound.org/member_files/editor_files/resource_materials/Endometriosis_Survey_Finding_a_Doctor.pdf Also here is a symptom tracker: http://www.endofound.org/member_files/editor_files/resource_materials/Personal_Pain_Profile.pdf
Here are some tips from Agency for Healthcare Research and Quality:
"Here are some tips to help you and your doctor become partners in improving your health care.
Give Information. Don't Wait to Be Asked!
- You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.
- It is important to tell your doctor personal information—even if it makes you feel embarrassed or uncomfortable.
- Bring a "health history" list with you, and keep it up to date.
- Always bring any medicines you are taking, or a list of those medicines (include when and how often you take them) and what strength. Talk about any allergies or reactions you have had to your medicines.
- Tell your doctor about any herbal products you use or alternative medicines or treatments you receive.
- Bring other medical information, such as x-ray films, test results, and medical records.
- Ask questions. If you don't, your doctor may think you understand everything that was said.
- Write down your questions before your visit. List the most important ones first to make sure they get asked and answered.
- You might want to bring someone along to help you ask questions. This person can also help you understand and/or remember the answers.
- Ask your doctor to draw pictures if that might help to explain something.
- Take notes.
- Some doctors do not mind if you bring a tape recorder to help you remember things. But always ask first.
- Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff. Or, ask if you can call later to speak with someone.
- Ask if your doctor has washed his or her hands before starting to examine you. Research shows that handwashing can prevent the spread of infections. If you're uncomfortable asking this question directly, you might ask, "I've noticed that some doctors and nurses wash their hands or wear gloves before touching people. Why is that?"
Take Information Home
- Ask for written instructions.
- Your doctor also may have brochures and audio tapes and videotapes that can help you. If not, ask how you can get such materials.
Once You Leave the Doctor's Office, Follow Up
- If you have questions, call.
- If your symptoms get worse, or if you have problems with your medicine, call.
- If you had tests and do not hear from your doctor, call for your test results.
- If your doctor said you need to have certain tests, make appointments at the lab or other offices to get them done.
- If your doctor said you should see a specialist, make an appointment.
Your Doctor Is Your Partner in Health CareYou probably have many questions about your disease or condition. The first person to ask is your doctor.
It is fine to seek more information from other sources; in fact, it is important to do so. But consider your doctor your partner in health care—someone who can discuss your situation with you, explain your options, and help you make decisions that are right for you.
It is not always easy to feel comfortable around doctors. But research has shown that good communication with your doctor can actually be good for your health. It can help you to:
- Feel more satisfied with the care you receive.
- Have better outcomes (end results), such as reduced pain and better recovery from symptoms.
Of course, good communication is a two-way street. Here are some ways to help make the most of the time you spend with your doctor:
Prepare for Your Visit
- Think about what you want to get out of your appointment. Write down all your questions and concerns. (Select for a list of suggested questions.)
- Prepare and bring to your doctor visit a list of all the medicines you take.
- Consider bringing along a trusted relative or friend. This person can help ask questions, take notes, and help you remember and understand everything once you leave the doctor's office.
Give Information to Your Doctor
- Do not wait to be asked.
- Tell your doctor everything he or she needs to know about your health—even the things that might make you feel embarrassed or uncomfortable.
- Tell your doctor how you are feeling—both physically and emotionally.
- Tell your doctor if you are feeling depressed or overwhelmed.
Get Information from Your Doctor
- Ask questions about anything that concerns you. Keep asking until you understand the answers. If you do not, your doctor may think you understand everything that is said.
- Ask your doctor to draw pictures if that will help you understand something.
- Take notes.
- Tape record your doctor visit, if that will be helpful to you. But first ask your doctor if this is okay.
- Ask your doctor to recommend resources such as Web sites, booklets, or tapes with more information about your disease or condition.
Do Not Hesitate To Seek a Second OpinionA second opinion is when another doctor examines your medical records and gives his or her views about your condition and how it should be treated.
You might want a second opinion to:
- Be clear about what you have.
- Know all of your treatment choices.
- Have another doctor look at your choices with you.
Check to see whether your health plan covers a second opinion. In some cases, health plans require second opinions.
Here are some ways to find a doctor for a second opinion:
- Ask your doctor. Request someone who does not work in the same office, because doctors who work together tend to share similar views.
- Contact your health plan or your local hospital, medical society, or medical school.
- Use the DoctorFinder online service of the American Medical Association. Go to: http://dbapps.ama-assn.org/aps/amahg.htm .
Get Information About Next Steps
- Get the results of any tests or procedures. Discuss the meaning of these results with your doctor.
- Make sure you understand what will happen if you need surgery.
- Talk with your doctor about which hospital is best for your health care needs.
- Talk with your doctor and try to work things out.
- Switch doctors, if you are able to.
Modified from Cancer.net (http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-doctor):
(good for after surgical diagnosis)
"Where exactly is it located?
- What are some common symptoms or side effects?
- How can I avoid these and/or manage them with my daily activities?
- Is there anything that can be done to make my symptoms or side effects better?
- Are there activities that may make them worse?
- If new symptoms or side effects arise or existing ones worsen, what should I do?
- What diagnostic tests or procedures are necessary? How often?
- What information will these tests tell us?
- How can I prepare myself for each test or procedure?
- Where do I need to go to have this test?
- When will I get the results? How will I get the results (over the phone, at the next appointment, etc.)?
- Can you explain my pathology report (laboratory test results) to me?
- If I seek a second opinion, will I have to repeat any tests or procedures?
- What are my treatment options?
- Which treatments, or combination of treatments, do you recommend? Why?
- What is the goal of the treatment you are recommending?
- What clinical trials (research studies involving people) are open to me?
- Who will be part of my treatment team, and what does each member do? (pelvic physical therapy for example)
- How much experience do you (or the treatment team) have treating endometriosis?
- What is the expected timeline for my treatment plan?
- How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
- What are the short-term side effects of this treatment?
- What long-term side effects may be associated with this treatment?
- Will this treatment affect my fertility?
- What can be done to treat my symptoms?
- How can I keep myself as healthy as possible?
- What support services are available to me? To my family?
- Whom should I call with questions or concerns during non-business hours?
- May I contact you or the nurse to talk about additional information I find?
- Where can I find resources for teenagers? For young adults?
- If I'm worried about managing the costs related to my care, who can help me with these concerns?
- Who handles health insurance concerns in your office?
- What follow-up tests do I need, and how often will I need them?
- Is there anything else I should be asking?"
"1. Tell your whole story. Studies have shown that more than 80% of diagnoses can be made based on history alone. Unfortunately, doctors sometimes seem to want to steer you toward a cookbook "chief complaint" or a series of "yes/no" answers. Learn to tell a succinct, effective story. Prepare and rehearse it.
"Before The Visit
Organize ahead of time Keep a list on the refrigerator, by your bedside, or in your purse. Jot notes about symptoms or questions as soon as they arise. A day or two before your visit organize your notes. Be as specific as possible. For "my arm hurts", you might describe the problems holding your arms up for hair drying, lifting children, or hanging laundry. Highlight the items that are particularly worrisome.
Identify goals for the visit What do you hope to accomplish with your doctor? A diagnosis? Referral to a specialist? Report new symptoms?
Prioritize your goals, listing your primary reason for this appointment first. How many problems should you talk about at a visit? Two to five, depending on the time allotted and the complexity of the problems.
Other notes to makeMake as many lists as you need to organize all the information and questions you need to communicate to your doctor:
- Current medication list: including prescription, over-the-counter, herbal supplements, vitamins, topical medications, alternative medications and treatments; allergies and previous adverse reactions; prior medications and why they didn't work.
- Problem list: a complete but concise summary of your medical history. Rank conditions in order of importance, with the most important first. Give dates, if possible. Example: Fibromyalgia - 1990, migraines - 1992, gall bladder removed - 1986.
- Specialist list: summarize latest recommendations. Example: Gynecologist - August 2002 - hormone replacement started.
- Recent tests: include dates and locations. Always ask for copies of your test results so you can have them for your own files.
- Changes in symptoms since your last visit
- Questions for today
- Refills needed
- Forms to be completed (with an SASE for return or sticky note with your telephone number)
At The Doctors Office
Speak up: Being part of a team requires trust and clear, open communications. Be frank, even if it's embarrassing. Hand your doctor your lists, so he knows what you want to discuss today. Remember your goals for this visit. Voice your ideas. It is best to ask questions as soon as they arise.
Clarify: Use words such as "exactly" or "specifically". Ask: How will this help me? What will happen if I don't do this? When you say to increase activity, exactly what kind and how often? Does exercise mean weights or walking? What do you mean by "come back if not better"? When and how much better?
Negotiate: Request a cheaper drug or one with fewer side effects and less risk. Ask for an easier regimen or a less painful procedure. If a suggestion is unrealistic for you, say so - don't leave discouraged because you can't do it all. Doctors can simplify or adjust treatments so you can live with the recommendations. And remember: it's okay to think about your decision or change your mind. Never be pressured or scared into an action. Short of a life-threatening emergency, there is always time to think things through.
What can get in the way? Knowing the factors that impede effective communication is half the battle. Emotions, communication style, differing expectations, and lack of time all work against us. When emotions are high, logic is low. The shock of a new diagnosis, fear, embarrassment, resentment, intimidation, and forgetfulness (fibrofog) can all jumble our thoughts. With pain and fatigue, you might not be functioning at your highest level. If you find emotions interfering with your visit, honestly state how you feel. Naming the emotion takes some of the punch out of it. Ask for a moment to compose yourself, count to 10 and breathe slowly and deeply. Begin again if you are able or wait for another time. Consider also that a chronic illness frustrates doctors as well as patients. Although your doctor wants to help, he may feel there is little he can do for you.
Poor communication frequently results when we assume too much. Just as "straighten up your room" has both a parent and a teen interpretation, failure to clarify medical directions may result in differing expectations for you and your physician. For example, assuming your test results will be normal unless you are called could be a deadly mistake. Rather than assume, specify. Request a simpler explanation. If you learn best by seeing or reading rather than hearing information, ask your doctor to draw a diagram or give you a brochure. Ask him to slow down or confirm details. Repeat any instructions he gives you and write everything down or tape record it.
Streamlining your visit No doubt about it, time is a huge factor in poor communications for today's healthcare providers. In an ideal world, a doctor would have enough time to answer all questions clearly. Since this rarely happens, how can you use your time with your doctor wisely? Studies show that you have 23 seconds to speak before the doctor interrupts, so weed out the irrelevant details. For example, state, "I passed out last night. They took me to the emergency room." Stop right there! Don't add, "And it was really cold in the ER and the nurse looked at me like she'd never heard of fibromyalgia and…" Unless you have more symptoms to add, let your doctor ask you questions. Refer to the list of concerns you brought with you to make sure you have all of them covered.
If there is not enough time to cover everything, request handouts and brochures that will provide you with information. Then schedule another visit with more time to fully discuss your concerns.
Before you leave Ask the doctor for written instructions. Summarize and make sure to clarify anything you aren't familiar with. Don't leave without fully understanding your diagnosis and treatment. If the doctor has left the room, ask a nurse.
Outside The Office
I forgot to ask… Realistically speaking, questions come to mind outside of the office. If your problem is urgent, call the office right away. Otherwise, check first to see if your question can be answered in a brochure given to you by your doctor. Consult your pharmacist for medication questions. Are you tempted to ask your chat room support group for advice instead? The Internet is a great place for researching information to discuss with your doctor, but relying on online information for medical answers can be dangerous.
Communicating by telephone The office RN can handle most questions. Call early in the day, but be aware that your call may not be returned until the end of the day. It is helpful to compose a one sentence description of the problem, including symptoms and dates. Have medication bottles handy as well as your pharmacy phone number. Write down your questions and have a paper and pencil handy to record instructions. Inform the office if family members may receive information.
Communicating by e-mail The majority of families with computer access want to communicate with physicians via email. Physicians generally are less comfortable with that route. Both sides have concerns about confidentiality. Some benefits of email include: ending telephone tag, speed, cutting costs, more detailed medical records, fewer medical errors, and improved compliance. Risks include: privacy and security, as well as physician concerns of staff workload, reimbursement and malpractice liability. More importantly, access to care might be determined by computer literacy. At present, most doctors do not offer email communication, but it pays to ask.
Communicating by Fax Transmitting messages via Fax provides many of the same advantages as email. Access to a fax machine (or directly from your computer with PC-fax software, allows you to send detailed, accurate communications. Fax is an especially good method when you have multiple requests and is an excellent way to receive your lab results from the office. Bear in mind that confidentiality is an issue when using shared office equipment.
You have the right to remain silent - but don't! Communication is a two-way street and it starts with you. Speak up! You have the right to understand your diagnosis, your symptoms, tests, procedures and all the risks and options. Your doctor has the responsibility of treating you with respect, listening, addressing embarrassing questions, educating, informing and considering your opinions and concerns. You are responsible for coming to scheduled appointments, taking your medication as prescribed, reporting adverse effects, becoming knowledgeable about your disorders, informing your doctor about your symptoms, progress, questions and concerns. Communication is an especially important skill for fibromyalgia patients. Make every word count!
Pointers For Successful Communications
Pointer 1: Talking about pain Mention where, how much (use a scale of 1-10), what makes it better or worse, description (tingly, achy, knife-like), medications used and, most importantly, the impact on your daily functioning. Decide on your pain management goals. "I need better pain control" could mean completely pain-free (but possibly sleepy) or it could mean enough pain control to be able to play with your grandchildren, work 20 hours a week, or sleep comfortably. You and your doctor need to be working towards the same goals.
Pointer 2: Talking about tests Discuss the reason for the test (diagnosis? Change in treatment?), method, accuracy, preparation, pain involved, when to expect results and insurance coverage. Test results are written in medical-ese, language that can be misinterpreted by non-medical people and well-trained medically knowledgeable friends. Ask your doctor to explain the wording in simple terms. Do not settle for a glossing over such as "that's nothing to worry about."
Pointer 3: Talking about medication Know the medication's purpose, how to take it (with food, time of day, when to stop), adverse effects, interactions with other medications, when it should take effect, and cost. Make sure you can read the prescription: if you can't, the pharmacist might not be able to either. To minimize errors and complications, it's a good idea to have one doctor all of your prescriptions, even specialty medications.
Pointer 4: Talking about alternative/complementary therapies (ACTs) Present articles from reliable sources, discuss pros and cons, and determine compatibility with your medications. Understandably, doctors are hesitant to advocate ACTs without scientific testing. However, your doctor may agree to a trial if the treatment has not been shown to be harmful. Obtain a prescription or letter of medical necessity, if possible, because insurance companies sometimes covers alternative therapies.
...Depending on your level of pain, fatigue and brainfog on any given day, even very simple, explicit instructions can be mind-boggling and impossible to understand. There is a limit to how much time the doctor, nurses or other staff can spend with you go to over and over and over something. If you can't bring someone with you who can be your brain then bring a tape recorder and tape your session with the doctor and anyone else you ask for clarification on the instructions or information you were given.
If you are seeing different doctors, they all need to know about all of the prescription medications the other doctors have prescribed, as well as all of the over-the-counter, vitamins, minerals, herbs, alternative preparations, enzymes, aminos, pre- and probiotics you are taking. Many symptoms that may be ascribed to your illnesses may in fact be adverse interactions between the various drugs, supplements, herbs, etc. that you are ingesting every day.
Make and keep updated a master list of all the medications (prescription and OTC, topical and oral), vitamins, minerals, herbs, herbal teas, and other products you are ingesting. You will want this not only for your records but so that you can easily print it out and take it with you to each new doctor you are seeing. Give updated copies at least once a year to your regular physician, dentist and other healthcare providers.
Keep all your receipts for all of these medications and products, and copies of your notes on their use, especially when you've discussed them with your doctor. The receipts and notes will provide the back up when you claim them as medical deductions on your income tax as well as document the fact that you are "trying" to get better when you are hit with a social security or long-term disability review, an event that may happen once every three years or so until you reach retirement age."