I found this information at www.endometriosis.org

Finding an endometriosis specialist
by Ellen T Johnson, USA

One of the questions we’re asked most often is, “How do I find a doctor who knows how to treat endometriosis?�?This is probably one of the most frustrating dilemmas for girls and women who have (or believe they may have) endometriosis. Where can we find the medical help we desperately need?

It can be difficult to find a doctor who has everything we’re looking for: surgical skills, thorough knowledge of endometriosis, current understanding of various treatments, openness to complementary approaches, and compassion for what we’re going through. Of course, we’d also like someone who has the training, knowledge, and expertise to identify all manifestations of this disease. And naturally, we’d want someone who would readily refer us to another expert if a unique problem were discovered. Needless to say, those traits are outside the responsibilities of a family doctor or even a typical gynaecologist.

Fortunately, several doctors around the world have made endometriosis their primary focus. These respected authorities are usually located in larger metropolitan areas or teaching hospitals, although a few can be found in smaller communities. But the trick is locating them! After all, there is no medical specialty for "endometriosis expert,�?(although there probably should be).

In your quest to find an endometriosis specialist, never start with the telephone book! That would undoubtedly be a waste of time and effort. You should also be careful of recommendations from friends and family members unless they also have endometriosis. I squandered two years with a recommended “fertility expert�?who made both my endometriosis and infertility worse.

As with most things concerning endometriosis, the best place to start is with a local or national endometriosis support group. They will know which doctors are proficient in treating this baffling disease in your area. Also consider asking for opinions online at the Endometriosis Forum, where women with endometriosis gladly share information with others. Other online forums, listservs, and newsgroups can also provide a wealth of information. If you have a good relationship with your family doctor, you might want to ask for a referral to an endometriosis expert. Doctors often know the authorities in certain fields.

If you have the means, you may want to consider travelling to see an expert, especially if you live in an area that doesn’t have access to an endometriosis specialist. Certain types of insurance may not cover an appointment with an “out of area�?doctor, so you may have to pay out of pocket. This can be a considerable financial, logistical, and emotional decision, but might be worth it in the long run. Treatment by an endometriosis specialist may help you avoid years of misdiagnosis or inadequate treatments.

In an ideal world, every woman with endometriosis would have her pick of several specialists. If you are in this advantageous position, narrow your choices down to two or three doctors. Then ask each doctor to review your medical records and outline a treatment plan. There may be a charge for this service, but it is well worth it.

Of course, expertise in treating endometriosis is just one component of a “good endometriosis doctor.�?There are other important considerations as well. During the appointment, ask the doctor specific questions about endometriosis (such as its appearance, its staging, and its treatment). Take the time to assess the doctor’s knowledge and expertise. Remember that fame does not always mean superior knowledge and skills.

After the appointment, ask yourself the following questions:

Locating a good endometriosis doctor may take time and effort.

Keep in mind that even after you locate an expert, that doesn’t mean you’ll be pain free. Even the best endometriosis doctors struggle with our disease and its treatment. However, finding expert help early on can help prevent delayed diagnosis, misdiagnosis, inadequate treatment, frustration, stress, and wasted effort. Trust me on this; it’s worth it.

To help you prepare for your consultations, please read:

Your initial endometriosis appointment: Questions the doctor may ask you!

Developed by Ellen T. Johnson, with contributions from Professor Philippe Koninckx, Professor Jörg Keckstein, and Professor Jacques Donnez

ESPANOL

If you’re like most women with endometriosis, you’ve been concerned about your pelvic pain and other unusual symptoms for quite some time. You may not have been taken seriously at first. Parents, friends, and even doctors may have dismissed your symptoms as a normal part of being female. But deep down, you knew your symptoms weren’t normal. At some point, you decided to listen to that voice inside you. And now you’re going for your initial appointment with the gynaecologist.

To make sure the doctor has all the information he or she needs in order to develop an appropriate treatment plan for you, it’s important to be well-prepared for this first appointment. To help you get ready, we’ve developed a list of questions your doctor may ask you. Think about your answers to the questions ahead of time so you can give the doctor all the information he or she needs to help you.

Basic Questions...

Most gynaecologists ask several basic questions at every appointment, regardless of the reason you’re there. Record this information in a small notebook and take it with you to each appointment.

Click HERE to print this form

BASIC QUESTIONS	YOUR RESPONSES
Date of your first menstrual period:
Date of your most recent menstrual period:
Duration of your period:
Type of flow (heavy, medium, light):
Do you have bleeding between periods?
Do you menstruate every 28 to 30 days, or are your cycles irregular?
What medications, birth control pills, hormones, and/or supplements do you take on a regular basis?
(Note the strength and how often these medications are taken.)
List any previous illnesses (including sexually-transmitted diseases) and surgeries you have had:	ILLNESS OR SURGERY: DATE:
List your immediate family’s major illnesses and diseases:
List all known allergies:
Do you use tobacco? If yes, how much and how often?
Do you drink alcohol? If yes, how much and how often?
Do you or have you ever used illegal drugs? If yes, how much and how often?
Do you have pain with your menstrual periods? Try to recognise the pattern of your pain. It’s important to tell the doctor if you have pain during your menstrual period, all the time, or if it comes and goes. These questions are often best answered by keeping a Daily Pain Journal (see below) that keeps track of the date, the day in your menstrual cycle, the amount of pain you’re having, and the duration of the pain (for example, did it last all day or just part of the day?).	 Yes  No  Sometimes

SPECIFIC PAIN QUESTIONS	YOUR RESPONSES
Do you have pain during or after sexual intercourse?	 Yes  No  Sometimes
When talking with your doctor about pain with intercourse, be open and honest about the type of pain you have, whether it’s with deep penetration or all the time, whether orgasm makes the pain worse, and what methods alleviate the pain.	 Pain is worse with deep penetration  I have pain during orgasm  I have pain after orgasm  I have pain with certain sexual positions
Do you have painful bowel movements?	 Yes  No  Sometimes
Many women with endometriosis report significant bowel pain, including painful bowel movements, rectal pain, constipation, or diarrhoea. The doctor will also want to know if you’ve ever experienced blood in your stool and if any of these symptoms occur during menstruation.	 I have painful bowel movements  I have rectal pain  I have constipation and/or diarrhoea or alternating courses of both  I have had blood in my stool  My bowel symptoms are worse during menstruation
Do you have pelvic pain with physical exercise?	 Yes  No  Sometimes
Some women with endometriosis report feeling more pain when they engage in strenuous physical exercise. The pain may be more severe during menstruation.	 Pain with exercise is worse during menstruation
When did your pain start?	 Pain started _____ years ago  Pain started recently. When? _______________________
Where is the pain? As you answer this question, point to or describe the area of your body that’s affected. Some physicians will provide a printed diagram of the body so you can mark the areas where you have pain.
Type of pain? When describing pain, consider which adjectives best describe what you experience. Women often describe endometriosis pain as burning, stabbing, gnawing, cramping, jabbing, throbbing, cold, sharp, aching, or pressure.
Severity of pain? There are several ways you can describe the pain’s severity. For example, you may choose to use an adjective, such as excruciating, severe, moderate, or mild. Or you may choose to use a pain scale, rating it on a scale of one (no pain) to ten (pain so severe, it makes you pass out). If it’s helpful, you may want to refer to the Andrea Mankoski’s Pain Scale (see below). Adjective(s) that describe my pain:	Pain on a scale of 1-10: _____

SPECIFIC PAIN QUESTIONS	YOUR RESPONSES
How bad is your pain right now? Be honest!
How many days each month are you in pain? If you have a really good memory, you may be able to estimate the number of days you’re in pain each month. However, most of us tend to put pain out of our minds after it’s come and gone, so our estimates aren’t always accurate. That’s why a Daily Pain Journal (see below) is a better way of determining exactly how many days each month you have pain.	Number of days I’m in pain per month: _____
Is the pain getting worse? From the time the pain started until now, has it gotten worse? If so, by what degree?	 Pain is getting much worse  Pain is getting somewhat worse  Pain is about the same as usual  Pain is getting somewhat better
How does the pain impact your life? Tell your physician if you’re missing work or school or declining invitations due to your symptoms. The doctor will also ask if the pain is preventing you from engaging in sports or exercise.
List the medications you have taken to try to alleviate your pain. Were these medications effective? Most women with endometriosis have tried some type of analgesic or anti-inflammatory pain reliever. Tell your doctor of any over-the-counter or prescription medications you have taken or are taking for pain, and whether they reduce your pain levels.	Meds Taken: Effective?
List any alternative methods you are currently using (or have used) to relieve your pain: When traditional methods don’t work, many women incorporate alternative approaches (such as acupuncture, chiropractic medicine, or biofeedback) to help alleviate their pain. Tell your doctor if you are taking any herbs or seeing alternative practitioners for your pain and whether these methods are effective.	Method: Effective?

OTHER SYMPTOMS:	YOUR RESPONSES
Do you routinely experience nausea with menstruation?	 Yes  No
Do you vomit during menstruation?	 Yes  No
Do you have unusual vaginal bleeding at any time during your cycle?	 Yes  No
Do you experience painful urination or blood in urine at any time during your cycle?	 Yes  No
Do you experience bloating during menstruation or at other times?	 Yes  No
Do you have difficulty gaining or losing weight?	 Yes  No
Do you experience fatigue?	 Yes  No

EXAMPLE DAILY PAIN JOURNAL
DATE	DAY IN CYCLE	ACTIVITIES AND EXERCISE	PAIN LEVEL(scale of 1 �?10)	TYPE & LOCATION OF PAIN + OTHER SYMPTOMS	HOW LONG DID PAIN LAST?	MEDS - TAKEN - EFFECTIVENESS
March 15	Day 4	30 minute morning walk	3	Cramping and pressure right below belly button Diarrhoea after lunch	2 hours	Tylenol (moderately effective)

ANDREA MANKOSKI’S PAIN SCALE (used with attribution)
0	Pain free.	No medication needed.
1	Very minor annoyance - occasional minor twinges.	No medication needed.
2	Minor annoyance - occasional strong twinges.	No medication needed.
3	Annoying enough to be distracting.	Mild painkillers are effective (i.e., aspirin, ibuprofen).
4	Can be ignored if you are really involved in your work, but still distracting.	Mild painkillers relieve pain for 3-4 hours.
5	Can't be ignored for more than 30 minutes.	Mild painkillers reduce pain for 3-4 hours.
6	Can't be ignored for any length of time, but you can still go to work and participate in social activities.	Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours.
7	Makes it difficult to concentrate, interferes with sleep You can still function with effort. Stronger painkillers are only partially effective.	Strongest painkillers relieve pain (Oxycontin, Morphine).
8	Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.	Stronger painkillers are minimally effective. Strongest painkillers reduce pain for 3-4 hours.
9	Unable to speak �?crying out or moaning uncontrollably �?near delirium.	Strongest painkillers are only partially effective.
10	Unconscious. Pain makes you pass out.	Strongest painkillers are only partially effective.