College Planning with Endometriosis

Impact of Endometriosis on College Planning:
A Guide for Teens

Endometriosis Conference
for Patients, Families, & Friends
Saturday,
May 31st, 2008
8am-3pm
Children's Hospital Boston
Click here for more info

Planning for college is a time filled with challenges and excitement. College life opens the door to personal growth and independence. It is a time that can be difficult, since you may be making decisions on your own for the first time. But it can also be a happy time, a chance to make new friends, try new activities, learn new things, and set up a home away from home.

There are many things to consider when planning for college if you have a chronic illness like endometriosis. We hope that the following information will answer your questions and offer helpful hints.

Should I be concerned about my health insurance coverage?

Yes! It is important to know exactly what kind of health insurance coverage you have. For example, some insurance policies will only provide coverage until you are 18 or 19 years old. Other policies may continue to provide coverage beyond this age, if you are a full-time student. Ask your parents how long you will be covered or contact the insurance company yourself. You should check with the admissions department at your college if you need to buy an additional "student insurance policy" while you are a student there. If you aren't covered by your parents' insurance while at college, make sure you sign up for a special "student insurance policy."

Before you leave for college, or as soon as possible, ask your insurance company to send you a summary of your benefits or ask them the following questions:

How long can I expect to have insurance coverage? (For example, up to what age am I covered? Do I need to be a full time student to receive or "get" full coverage?)
Does the policy cover emergency services or check-ups out-of-state?
Does the policy require that I tell the insurance company within a certain amount of time if I use emergency services?
Is there a waiting period for certain services?

What do I need to know about the health services at college?

You will need to find out:

When the health service is open,
Who you can talk to if you have any issues related to your endometriosis, and
How to reach someone if you have concerns or questions
If there is a health care provider at the college health center that has experience in caring for young women with endometriosis. (If so, get the name and number before you need it).

In case of an emergency or if you need care that your health service can't provide, you should know the location of the closest hospital to your college. Find out what kind of services are offered and if students are usually transferred to another hospital if more specialized care is needed.

What should I do before I leave for college?

Make an appointment with your gynecologist before you leave for college. Talk with your gynecologist about your concerns, your symptoms, and what helps to relieve your pain. Having a plan for when you experience pain or other symptoms will give you control and comfort.
Be sure to have prescriptions filled with enough refills to last you until you return to your doctor for a follow-up visit.
Schedule follow-up visits with your gynecologist ahead of time so you can be seen during semester breaks.
Ask for a copy of recent operative notes (if you have had surgery for endometriosis) from the hospital where you were treated. Put them in a notebook and bring it with you to college with your important papers and/or ask the Health Center at school to keep a copy on file.

Should I find a gynecologist near my college?

If you are going to a college that is far away from your home, you may decide that having a local health care provider or a gynecologist is best for you. Your primary care physician or gynecologist at home may be able to help you find someone in your college area that has expertise with taking care of young women with endometriosis. It is best to try and schedule an appointment with your new gynecologist before you start classes so you can establish a relationship.. You can help the communication among all doctors involved in your care by providing them with a list of all your medical providers, and a brief description of their roles in your health care. Include telephone numbers, fax numbers, addresses, and email contact information, if appropriate. Provide them with copies of any important medical records, including notes from any operation, a list of medications you are taking, and any side effects or allergic reactions you have had from any medications.

It may take a little while until you feel completely comfortable making your needs known since you are also adjusting to college life. As you work with your health care providers, you will soon learn how to express yourself so that you can get your needs met. Remember, you are probably not the first student they've met who has endometriosis.

Should I talk with my professors about the effect of endometriosis on my life?

Some young women find that talking with their professors about their endometriosis is helpful. You may feel awkward at first about approaching your professors. However, most professors appreciate students who talk to them early on if there might be a problem that could potentially affect learning. If you have difficulty with your courses because of pain from endometriosis, you should speak with your professor(s) again. The longer you wait, the more overwhelmed you may become.

You don't have to give specific information unless you want to. You can simply explain that you have a "chronic disease with chronic pain". Since endometriosis affects approximately 5 million women and girls, you may find that your professor is familiar with it.

Is there anyone else I should talk to?

It can be helpful to have 1-2 designated people in your college Health Center as your "liaisons"- a person to whom you can go to when you need medical assistance and another person who can offer you emotional support. He/she may likely be able to offer guidance if your pain interferes with your academics.

What are some ways to deal with my college workload?

Learning to use the course syllabus to your advantage can be helpful in dealing with your college workload. The syllabus lets you know what is expected of you for each class, and allows you to plan your course work accordingly. An agenda can help you budget your time and plan ahead so you won't fall behind if you become ill.

Taping lectures and then taking notes later from the recorded lecture can help if you have trouble concentrating in class. You will need to make time for listening to taped lectures sometime after class. If you can't make it to class, ask a friend to tape the lecture for you. Most colleges also have resource centers that provide a variety of services to help students deal with heavy workloads.

What else should I know?

Many colleges have "disability services," but they may vary in terms of the services they provide. Look on the web or in a college catalogue under "disability services" to see if your college has experience with chronically ill students. See what services they can offer if you get sick, such as help with note taking, extensions on test and papers, food service help for dietary needs, special housing, or transportation needs.

Preparing ahead when you have a chronic illness helps you to advocate for yourself and be aware of services before you need them, so you can make the most of your college experience.

Online Resources

The Center for Young Women's Health's Teens & Endometriosis Chat

http://www.youngwomenshealth.org/chat.html

Endometriosis Association

http://www.endometriosisassn.org

Written by the Center for Young Women's Health Staff

Updated 3/12/06

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