Tips for Talking to Your Doctor About Endometriosis

If you have endometriosis, your physician is there to help you through the disease, but she or he can't be of maximum benefit unless you're honest about communicating your symptoms and the ways they affect your life.

You are not alone, though, if previous physicians did not take your symptoms seriously enough to warrant further investigation. Nowadays, doctors are more aware of how common endometriosis is (affecting about one in 10 women) and what a heavy physical, psychological, social, and economic toll it can take.

Be aware that endometriosis is now considered a global system-wide inflammatory condition that can impact many parts of the body outside of the pelvis and outside of your menstrual periods. It can also occur in pre-adolescent girls and postmenopausal women.

In its widespread effects, endometriosis is akin to other diseases linked to the immune system such as rheumatoid arthritis, psoriasis, and inflammatory bowel disease.

Here are a few tips on how to have a better dialogue with your physician to ensure better outcomes:

• Even if you've done so in the past, don't be "stoic" and minimize the impact of your symptoms. Describe in detail how severe they are and how long they last, also noting any concerns related to your symptoms perhaps not being taken seriously enough in the past
• Do the pain and heavy bleeding cause you to miss school or work or to bow out of sports and social events? Do you feel pain and/or fatigue in parts of your body beyond the pelvis? Do you feel depressed? Do your symptoms interfere with interpersonal relationships?
• Your doctor may have a detailed endometriosis impact questionnaire that you can fill out to help assess more precisely the effects on multiple aspects of your life and functioning
• Try to relax and make eye contact with your physician. Listen carefully to what she or he says
• Come prepared with a list of important questions you want to raise at a given consultation – you likely won't be able to ask all your questions at a single session. Bring a notebook or ask if you can record your visit for future reference. In the back and forth of a doctor's visit, it can be difficult to remember everything you want to ask and even harder to remember all the answers

Some of the specific questions you might ask at a visit:

• Given my symptoms, what would be the best treatment(s) for me?
• Do the benefits outweigh the risks of this therapy?
• Are there any alternative treatments that might help?
• What would likely happen if I decided to have no treatment at all?
• Even if controlled, will my symptoms recur after a time?
• What coping mechanisms are recommended for managing flare-ups and breakthroughs?
• Will my condition need to be monitored regularly?
• Am I likely to need surgery down the line?
• Does having endometriosis increase my risk of other diseases?
• Will my daughters have endometriosis?

Keep a diary of when your symptoms are at their worst and see if they seem aggravated by factors such as diet, overexertion, mental stress, or poor sleep.

Thinking ahead to when you might want to have a family, broach the topic of how endometriosis could affect your ability to become pregnant and what kind of monitoring you should have to keep track of your ovaries' reserve of eggs.

You may also want to raise the issue of freezing eggs for future use, although this is an expensive process not usually covered by health insurance.

See if your doctor can refer you to a local endometriosis support and information group. It always helps when you can benefit from the collective wisdom of your peers. And these groups often follow the latest research and clinical studies to help keep members up to date.

Ask for any pamphlets or printed resource material the office many have on hand.

Remember, you have an important role to play in managing your condition. Partner with your doctor by being the most honest and communicative self-advocate you can.

Read previous installments in this series:

What Is Endometriosis?

How Will Your Doctor Diagnose Endometriosis?

What to Know About Endometriosis Treatment

Fertility and Pregnancy in Endometriosis

Managing Endometriomas: What to Know

"Medical Journeys" is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.