Endometriosis for Parents: College Planning

Single-Yellow-GirlPlanning for the day when your daughter goes off to college is a time filled with mixed emotions. As a parent you probably know that college life will open new doors as well as many opportunities for your daughter and it is also a time in her life when she will be growing personally. Her job will be to learn how to take care of herself and live independently. It can be difficult for both of you while she is learning how to manage her life, since she may be making decisions on her own for the first time. For your daughter, college is a chance to make new friends, try new activities, learn new things, and set up a home away from home. For you, it is a time of adjustment and letting go. Allowing your daughter to advocate for herself and problem solve may be a tall order if you have been managing most aspects of her life, including her health issues. However, it is likely that she has gradually taken on more responsibility during the last few years.

There are many things to consider when helping your daughter plan for college. If she has endometriosis, and is planning on living away at school, there are additional things to consider. We hope that the following information will answer your questions and offer helpful advice.

Should my daughter know about her health insurance coverage?

Yes. It is important that your daughter know exactly what kind of health insurance coverage she has. For example, some insurance policies will only provide coverage until a child is 18 or 19 years old. Other policies may continue to provide coverage beyond this age, if the child is a full–time student. Tell your daughter how long she will be covered and give her the contact information along with an insurance card. You or she can check with the admissions department at her college to see if she needs to buy an additional “student insurance policy” while she is a student. If you know she isn’t covered by your family’s insurance plan while at college, make sure she signs up for a special “student insurance policy.”

Most insurance companies require a student to complete a form every year documenting that they are a full time student. If they don’t complete the form, the insurance company may not cover your medical bills. Complete the form!

Before your daughter leaves for college, or as soon as possible, ask your insurance company to send you a summary of your family’s benefits. You both should know the answers to the following questions:
  1. How long will my daughter have insurance coverage? (For example, up to what age is she covered? Does she 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 she contact the insurance company within a certain amount of time if she requires emergency services?
  4. Is there a waiting period for certain services?
  5. How much is the co–pay for general medical, specialty, and urgent care appointments?
If you’re unable to find the answers by checking your insurance policy, encourage your daughter to call the insurance company and talk with a representative. Remind her to write her answers down someplace in her agenda or a notebook that she’ll be taking to college.

What does my daughter need to know about the health services at college?

She will need to find out:

  • When the Health Center is open
  • What kind of services are provided
  • Who she can talk to if she has any issues related to her endometriosis
  • How to reach someone if she has 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, she should get the name and number before she needs it.)
  • If someone at the Health Center can administer her Lupron Depot® injections (if applicable)
Your daughter should know the location of the closest hospital to her college in the event of an emergency, or if she needs more care than her college Health Center can provide. She should also find out what kinds of services are offered, and if students are transferred to another hospital if more specialized care is needed.

Is there anything my daughter should do (because she has endometriosis) before she leaves for college?

  1. Tell her to make appointment with her gynecologist 1–2 months before she leaves for college.
  2. Encourage her to keep at least a 1 month record of her pain and symptoms and bring it with her to her appointment.
  3. Stress that it is very important that she tell her gynecologist about her concerns, her symptoms, what helps to relieve her pain and what makes it worse.
  4. Suggest that she talk to the GYN team about a plan for when she experiences pain or other symptoms while away from home. (This will give her control and comfort).
  5. Be sure to have your daughter get her prescriptions filled with enough refills to last until she returns for a follow–up appointment. It is also a good idea to get the name and number of a pharmacy near her college campus.
  6. Have her schedule follow–up visits with her gynecologist ahead of time so she can be seen during semester breaks.
  7. Help her request a copy of any recent operative notes from the medical records department (if she has had surgery for endometriosis) from the hospital where she has been treated. Advise her to put the reports in a notebook/binder and bring it with her to college with other important papers and/or ask the Health Center at school to keep a copy on file.

Should my daughter find a gynecologist near her college?

If your daughter will be attending a college that is far away from home, you and she may decide that having a local health care provider or a gynecologist is best for her. It is a good idea to schedule an appointment with her new gynecologist before she starts classes so she can establish a relationship. She can help the communication among all of her health care providers involved in her care by providing each of them with a list of all of her medical providers, and a brief description of their roles in her 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 she is taking and any side effects or allergic reactions she has had in the past. Creating a timeline of when her symptoms began, date of surgeries, etc., is also very helpful.

It may take a little while until your daughter feels completely comfortable making her needs known since she will also be adjusting to college life. As she works with her new health care providers, she will soon learn how to advocate for herself so she can help coordinate her care.

Should my daughter talk with her professors about having endo?

Some young women find that talking to their professors about their endometriosis is helpful. Your daughter may feel awkward at first about approaching her professors. However, most college faculty appreciate students who come to them early on in the semester if there might be a problem that could potentially affect learning. If she finds her courses challenging because of pain from endometriosis, she should definitely speak with her professor(s) again. The longer she waits, the more overwhelmed she may become. You can explain to her that she does not have to give detailed information about her medical condition unless she wants to. She can simply explain that she has a “chronic disease with chronic pain”. Since endometriosis affects approximately 5 million women and girls, she may find that her professor is familiar with it.

Is there anyone else my daughter should talk to about her endo?

It can be helpful to have 1–2 designated people at your daughter’s college Health Center as her “liaisons” – one person to whom she can go to if she needs medical assistance and another person who can offer her emotional support. These people should be capable of offering your daughter guidance if her pain interferes with
her academics.

What are some ways to help my daughter deal with her college workload?

Learning to use the course syllabus can be helpful for your daughter in dealing with her college workload. The syllabus keeps her informed about what is expected of her for each class, and allows her to plan her course work accordingly. An agenda can also help your daughter manage her time and plan ahead so she won’t fall behind if she becomes ill. Recording lectures and then taking notes later can help if she has trouble concentrating in class. If she can’t make it to class, she might be able to ask a friend to take notes or record the lecture for her. Most colleges also have Resource Centers that provide a variety of services to help students deal with heavy workloads.

Are there any special services on college campuses that help students with chronic illnesses?

You and your daughter can check the college website to see if her school has 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. If she has a 504 plan, it will help her access special services.

Learning to plan ahead particularly when dealing with a chronic illness will help your daughter to effectively advocate for herself and be aware of special services before she needs them, so she can make the most of her college experience.