Endometriosis: College Planning

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Planning for college is a time filled with challenges and excitement. College life opens the door to personal growth and independence. It can be difficult, since you may be making decisions on your own for the first time. It can also be exciting, 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 such as 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 questions listed below.

  1. 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?)
  2. Does the policy cover out–of–state emergency services?
  3. Does the policy require that I contact the insurance company within a certain amount of time if I use emergency services?
  4. Is there a waiting period for certain services?
  5. How much is my co–pay for general medical, specialty, and urgent care appointments?

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

You will need to find out:

  • When the Health Center is open
  • What kind of services are provided
  • Where the Health Center is located
  • Who you can talk to if you have any issues related to your endometriosis
  • How to reach someone if you have concerns or questions
  • If there is a health care provider at the Health Center that has experience in caring for young women with endometriosis. (If so, get the name and number before you need it.)

You should know the location of the closest hospital to your college in the event of an emergency, or if you need more care than your college Health Center can provide. Find out what kind of services are offered, and if students are transferred to another hospital if more specialized care is needed.

What should I do before I leave for college?

  1. 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.
  2. Be sure to have prescriptions filled with enough refills to last until you return to your doctor for a follow–up visit.
  3. Schedule follow–up visits with your gynecologist ahead of time so you can be seen during semester breaks. Make sure to ask how frequently your provider would like to see you, 3 months, 6 months, or annually.
  4. Remember your prescription will only have enough refills to get your to your next recommended appointment. This means that if your provider requests to see you back in 3 months, then the prescription will only have enough refills for 3 months.
  5.  Scheduling appointments is on you as the patient. Sometimes the provider’s office will call to help you schedule an appointment, but often times it’s up to the patient. Set yourself a reminder. If your provider request to see you annually, set a 6 month reminder to call and schedule your appointment if you are unable to schedule one a year in advance.
  6. 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. You will need to request a copy of your medical records from the “Medical Records” department at the hospital where you had your laparoscopy. You may have to do this in person, or you may be able to send or fax a letter.

Should I find a gynecologist near my college?

If you are going to a college that is far away from home, you may decide that having a local health care provider or a gynecologist is best for you. It is a good idea to 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 e–mail contact information, if appropriate. Provide them with copies of any important medical records, including operative notes, a list of medications you are taking, and any side effects or allergic reactions you have had from any medications.

It may take a while until you feel completely comfortable making your needs known since you’re also adjusting to college life. As you work with your new health care providers, you’ll soon learn how to express yourself so that you can help to coordinate your care.

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

Some young people find that talking to their professors about their endometriosis is helpful. You may feel awkward at first about approaching your professors. However, most college faculty appreciate students who talk to them early on in the semester 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 176 million people around the world, 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. They 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. You may also be able to access lectures online.

What else should I know?

Check your college website to see if your school has special services for chronically ill students. They may be able to offer help with note taking, extensions on tests or papers, and/or help with special dietary needs.

Planning 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.