How Can I Support my Daughter with Endo?

Support, motivation, and encouragement go a long way in helping patients cope better with the debilitating nature of endometriosis symptoms. As a parent, you can be a huge source of motivation and advocacy for your daughter with endo as she navigates through life with the disease.

Empathize with her emotional upheavals

Endometriosis can cause your daughter to go through an emotional rollercoaster. This is because it can impact her personal, academic, and professional life. Feelings of anxiety, anger, guilt, remorse, confusion, and despair are not uncommon. These feelings are usually a result of pain, and anxiety relating to the lack of control over when symptoms occur.

As a parent, you can help your daughter develop emotional resilience by being supportive and understanding of her situation.

Help her set realistic career goals

Endometriosis may “slow down” your daughter. However, it need not hinder her success. But understanding one’s body signals and pacing oneself accordingly is of great importance. Try helping your daughter with endo in setting academic and career goals and breaking them into achievable targets. This can provide much-needed motivation and the confidence she needs.

Encourage her to an early treatment plan

If one’s endometriosis is at a stage where it needs treatment, the sooner it is diagnosed and treated, the sooner the relief from symptoms. Laparoscopic deep excision surgery is the gold standard for endometriosis diagnosis and treatment. Excision surgery provides complete symptom relief since all lesions — both deep and superficial — are completely removed. Encourage your daughter with endo to be an active participant in the treatment plan. This way, her awareness about the disease can increase and she can be her own advocate.

Encourage her to be active

Endometriosis pain can cause your daughter to coil up on the couch with no interest in hobbies or other forms of recreation. Try to encourage her to become more active, socialize with friends, or develop a new hobby of interest. However, make sure that she doesn’t push herself too hard while doing this. On tougher days, offer to engage with her by her side- give options of stay-at-home activities as well as the option of having friends over.

Keep track of her diet and sleep

Help your daughter consult a certified nutritionist and support her in consuming an anti-inflammatory diet to minimize symptom flares.

Adjusting sleep routines for proper sleep hygiene can also go a long way in ensuring good overall health.

Advocate for your daughter at school

Apprising the school of your daughter’s special needs can ensure they take measures to make her study as comfortable as possible. The Endometriosis Foundation of America offers the “Endo EduKit“, which provides a wealth of information about the disease that can be useful.

Plan a meeting with school authorities

As a parent, it is also important that you let the school management know about some of the limitations your daughter with endo might encounter during the school day. For example, let the school know that she might be frequenting the bathroom often on certain days or that she might need extended study periods, assistance with assignments, or access to the nurse’s office. Note that it may take time to have the necessary accommodation in place, so it’s best to schedule these meetings well ahead of time before the academic year begins.

You can also ask for an Individualized Education Plan (IEP) according to your local regulations. You should ideally do this before the start of the academic year. More information may be available at the school’s special education department or the accessibility office.

Let the school know of your daughter’s medical needs

The meeting with the school administration is also a good time to let the medical or nursing team know about your daughter’s medical history and the medications she’s currently on. Keep in mind that the authorities may think nothing is visibly wrong with your daughter who has endo. So, ensure that you apprise them about the nature of the disease and what she needs to feel comfortable.

Follow up on the initial meeting regularly

Most schools would do their best to accommodate the needs of your daughter with regards to her endometriosis. However, it is a good idea to periodically follow up with the school on the accessibility measures they have implemented and also keep a tab on your daughter’s progress. For example, you should discuss absences and late days so that they don’t negatively affect her academic achievements. The school may determine that a home tutor may be necessary to better support her learning.

Give equal importance to your daughter’s own experiences as well. She might be more comfortable discussing her curriculum and interactions with teachers and fellow students with you than with school authorities. Compile this information and see what can be changed or improved for the next academic year.

Have an open conversation

Despite your best efforts, your daughter might simply not feel like going to school on some days when endometriosis flares, or otherwise. Pain and fatigue are the biggest factors that can demotivate her. You could try preparing her mentally and emotionally for the upcoming pain before she is due to have her period. Reminding her of the support systems available to her at school may help motivate her.

Spend quality time with her

Endometriosis may often be taking center stage in most of your conversations. But it is also important that you discuss other topics with your daughter. Spending quality time together can also go a long way in assuring her of the most reliable support system there is — her parents.

Give her access to proper resources

Endometriosis is an ever-evolving field and requires both patients and clinicians to be constantly on top of new developments. You can tap into organizations such as the Endometriosis Foundation of America or your local support groups that can provide much-needed motivation and access to further resources. Dr. Seckin’s book EndoMEtriosis: A Guide for Girls can be a great read both for you and your daughter.

Do you have a daughter with endo? Do you find it difficult to support her? Or perhaps you would like to share some tips with other parents. Please leave a comment on our post on Facebook or Instagram