How to Talk to Your Doctor

The Encounter
Or: "How to get Your Doctor to Listen"

Please note: the following are only suggestions. They are in no way intended to be construed as medical advice.
You do not need to be a diagnosed patient to use these suggestions - please adapt to suit your own needs.

We've all been there: draped in a paper gown with our clothes and our dignity in a little pile on the chair next to the cold, uncomfortable table we wait (and wait - and wait) for the doctor on. When the doctor finally arrives for your allotted 15 minute visit, you try to cram as much information into one sentence as you can - while enduring invasions from cold speculums and other instruments of torture. When the pelvic exam is over, the doc stands up and announces cheerily, "everything looks great! See you in 6 months!" You get dressed and wonder if he actually heard your complaints of pelvic pain, irregular bleeding, medication intolerance, etc.etc. You go home feeling worse than you did before you got there and wonder if you will ever get help from the medical establishment.

This is a sad reality of life with this disease for many of us. Did you know the average delay in diagnosis for an Endometriosis patient is a staggering 9 years?

So how do we become partners in our healthcare and get our physicians to listen? Believe it or not, it is possible!

First, Find a Doctor who can Successfully Treat your Endometriosis

OBGYN is the discipline that primarily treats Endometriosis. You may also want to consider seeing a Reproductive Endocrinologist or other health care professional depending upon your own situation; however, the questions below are formatted with an OBGYN in mind. Adapt to whichever practitioner you might be seeing.

The best Endo doctor referrals seem to come from word of mouth. Talk to other Endo patients and find out who their doctor is, what they think of him/her and if they would feel comfortable recommending you. Contact Support Groups in your community, talk to the Endometriosis Research Center, search internet message board communities for positive references, call your local hospital, state medical board and even the AMA if you need to. There are several Endo experts out there, many of whom take various forms of insurance. Seek and ye shall find a practitioner to suit your needs.

Get to Know Your Doctor's Capabilities

It is important when selecting a specialist to treat your Endo that you are aware of his/her capabilities in treating the disease. Some questions you may want to bring along with you to the appointment include:

How much of your practice is dedicated to obstetrics? How much to gynecology? This can be helpful in determining whether or not your doctor will be sent off to the delivery ward during your appointment time...this happened to me on too many occasions to count; usually after I had been in the waiting room for upwards of an hour already.
How familiar are you with the disease? Do you have many Endo patients? Do you keep up on the latest information surrounding the disease?
What do you believe the proper course of treatment to be?...one note here; if the doc says "pregnancy!" or "hysterectomy!" without even examining your records and dismisses all other methods of treatment, you may want to thank them and see yourself to the door immediately.
What method of surgery do you utilize to remove the Endometriosis lesions?...if you believe excision to be more successful than simple cauterization or ablation, then you would likely wish to select another doctor who does perform that type of surgery.
Do you have colleagues consult in the OR with you in the event that the disease presents itself in an area outside of your expertise?...ie. bowels, bladder, etc. - often, surgeons leave Endo in these areas to professionals who are better suited to treat it, such as gastroenterologists and urologists/urogynecologists, for instance.
Do I have access to all of my medical records at any time I wish?

Other things to consider...do you feel comfortable talking with the doctor? Do you think that you will be able to be an active partner in your healthcare with that particular healthcare provider, or do you feel as though "they are in charge?" There is a long-standing joke in many patient circles: "what's the difference between God and a doctor? God doesn't think he's a doctor." If your physician gives the impression that you will have no say in your treatment, then they are probably not the doctor for you.

If you're not already diagnosed...

...tell your doctor what you are feeling and why you suspect you might have Endo. Do you have any of the following symptoms?

Reproductive/bowel/urinary tract Endometriosis
chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
infertility, miscarriage(s), ectopic (tubal) pregnancy
IBS-type symptoms (abdominal cramping, bloating, diarrhea, constipation, painful bowel movements, sharp gas pains)
dyspareunia (pain during intercourse)
pain after intercourse
backache
leg pain
blood in stool
rectal bleeding
tailbone pain
blood in urine
tenderness around the kidneys
painful or burning urination
flank pain radiating toward the groin
urinary frequency, retention, or urgency
hypertension

Lung Endometriosis
coughing up of blood or bloody sputum, particularly coinciding with menses
accumulation of air or gas in the chest cavity
constricting chest pain and/or shoulder pain
shoulder pain associated with menses
shortness of breath
collection of blood and/or pulmonary nodule in chest cavity (revealed under testing)
deep chest pain

Sciatic Endometriosis
pain in the leg and/or hip which radiates down the leg (this symptom is concurrent with both sciatic and inguinal Endo)

External (skin) Endometriosis
painful nodules, often visible to the naked eye, at the skin's surface. Can bleed during menses and/or appear blue upon inspection (skin endo)

General, non-specific symptoms
Fatigue
chronic pain
allergies and other immune system-related problems

Surgery is still currently the only way to confirm a diagnosis of Endometriosis. If your doctor wants to place you on Lupron or another GnRH prior to obtaining a surgical diagnosis, you may want to rethink becoming his/her patient. Most Endo experts believe it is not only a poor method of diagnosing the patient, it is also unethical to treat an undiagnosed patient with such drastic means.

How to talk to Your Doctor

Remember that you are both human beings; don't place any unreasonable expectations on yourself or the doctor. By working together to treat your case the best way possible, you can reach a successful level of management of your Endo.

If possible, it is helpful if you go to your appointment with a prepared set of questions to ask, a journal or diary of your symptoms over a period of time, and perhaps a pain journal as well.

Following are some examples of questions to consider when meeting with your doctor for the first time, questions to ask regarding surgery or other procedures, and a sample pain journal which you may want to adapt for your own usage.

When Meeting for the first time

Do you have medical records from previous physicians throughout your treatment? Bring them.
Explain why you are there. What are your symptoms, concerns, fears? How long have you been experiencing these problems? Be specific.
Don't be afraid to ask questions.
Indicate that your wishes to be a partner in your treatment plan. When discussing options, always ask what else is open to you and choose the option you feel most comfortable with.

Surgery Questions

What is the reason for my surgery?
What exactly will be done during the surgery? For instance, if the surgery is a hysterectomy, will it be total or partial? Stress your wishes prior to surgery and put in writing what your understanding is...if you are going for a diagnostic laparoscopy and do not wish to wake up with a hysterectomy done without your permission, let them know that!
What pre-op procedures will be done? Do I need to store some of my blood? What type(s) of incision(s) will be made?
What type of anesthesia is being used?
Am I at high risk for any complications? If so, why, and what are they?
How do you expect to deal with any unforeseen complications, should they arise?
How much pain can I expect to be in post-operatively?
How can I lessen the pain? What are my post-op restrictions?
Will I have bowel or bladder problems afterwards?
Who will be in the operating theater to assist? What specific capabilities will they bring to the surgery?
When can I expect to return to work?
When can I expect to engage in intercourse?
When can I expect to return to my exercise regimen?
Are there post-op food or liquid restrictions?
Will you be provided with a prescription for painkillers prior to surgery, so you don't have to fill it on your way home from the hospital?
How can I help to prepare my body and myself for the surgery?

Remember, you will get basic answers to all of these questions and the others you think of...no two patients are alike and so the answers cannot be assumed to be the standard for everyone.

Medical Therapy Questions

What is the reason for placing me on this drug?
What exactly will this drug therapy accomplish? For instance; is it for pain relief, or will it actually work to shrink the lesions?
What side affects am I at risk for? i.e. fatigue, weight gain/loss, loss of libido, mood swings, physical changes, etc.
Are there any food, liquid or other drug interactions? Any other contraindications?
How long is the course of therapy? Can I stop anytime?
Will this therapy be followed up by therapeutic surgery or other method of disease maintenance?

Remember, you will get basic answers to all of these questions and the others you think of...no two patients are alike and so the answers cannot be assumed to be the standard for everyone. Please remember that Endometriosis is currently incurable, and no drug therapy is a guarantee to be symptom-free for any specific amount of time.

Keeping a Pain Journal

This might be helpful in documenting your pain and being able to relay your situation to your doctor.

Some words to describe pain:

dull ache
itching
cramping
constricting
burning
stabbing
nagging
pinching
shooting
throbbing

Think about how much pain affects your daily activities.

How much pain do you have on an average day?
How often do you have the pain?
Is there any time of day that the pain is worse?
Do any activities set your pain off?
Does the pain come and go?
What helps alleviate the pain?
How upsetting and disrupting is the pain to you?
What do you believe causes the pain? ie. cysts, Endometriosis implants, adhesions, scar tissue, etc.
Does pain interfere with your personal routine? ie. brushing your hair, eating, getting dressed

In your pain journal, try keeping track of when you experienced the pain and the level of pain experienced. For instance:

Use the following ratings to gauge your pain: 1-mild, 2-moderate, 3-distressing, 4-horrible, 5-unbearable

TIME OF DAY PAIN OCCURRED: 4 p.m.
PAIN RATING: 3
WHERE WAS THE PAIN: lower right quadrant
WHAT WERE YOU DOING? reaching for something
DID YOU TAKE PAIN MEDS? HOW MUCH: none
WHAT WAS THE PAIN RATING AN HOUR LATER? 2
COMMENTS? seems to be happening more and more frequently; could be adhesions?

I have found that most doctors are in the business of helping people because they truly want to. There are, as with any profession, a few bad apples out there...but don't let them spoil the bunch. If you are not happy with your doctor, find another. http://www.hcgresources.com/docs.html

Hopefully, some of the above guidelines and examples will assist you in finding a great doctor who will partner with you to successfully treat your Endo!

Note: Portions of the above "Pain Journal" are adapted from St. Vincent's Medical Center Patient Guide. (c) copyright by 1997 St. Vincent's Medical Center.

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