The following topics are going to be the chapters in my book. I will be having about five to ten women write for each of the topics. I have added questions under each topic to give you some guidance as to what to write about. Remember that they are only suggestions and do not have to be the only questions answered. You can write anywhere from a few sentences to a couple of pages. Try to be original and stay away from just writing your basic story. Instead, try poetry, pros, journal format etc. as they are all great ways to express yourself and tend to be a bit more interesting.
TOPICS TO WRITE ABOUT
1. People telling you that the pain and suffering you experienced was “all in your head”
-How did it make you feel when they said that?
-Who told you that?
-Did you believe them?
-If no, did you fight them on it?
-Did it delay your diagnosis or treatment seeking?
2. The journey towards getting a diagnosis and the day you found out you had endometriosis
-How did you find out you had endo?
-How old were you when you were diagnosed?
-What made you seek out a diagnosis to begin with-what were your symptoms?
-Was it difficult to get a diagnosis-how long did it take before you were diagnosed?
-Had you heard of endo before you were diagnosed? What had you initially thought it was?
-How did you deal with telling your family/loved ones that you had this disease?
-Did you research it after you found out/was the research what you expected?
-How did you feel: relieved, devastated etc.?
3. Pain/pain medication
-How would you describe the pain?
-How do you deal with pain?
-What does the pain prevent you from doing/ how does the pain affect your life?
-How do pain meds affect your life?
-What are others reactions to you taking pain meds (family, friends, doctors, strangers…)?
-Difficulty/non-difficulty in getting pain relief?
-How do you feel about taking pain meds?
-Stigma regarding those who take pain meds/being labeled a “druggie”
-Getting meds at the ER or in the hospital
-Alternative methods of pain management
4. Treatment options, hormones and medications
-What treatment options were presented to you by your doctor?
-Which did you decide to do?
-Did you try Lupron? How did it affect you?
-How did the hormones affect you and your life?
-What side effects did you experience from the medications other than hormones? How did they affect your life?
5. Infertility, wanting a child, not being able to conceive
-What emotions do you feel when you are waiting to see if you would get your period?
-How do you feel when you find out that you are not pregnant again?
-How does infertility or trying to conceive affect your relationship with your significant other? Other family members? Friends? Strangers?
-What does it feel like to be around people who are pregnant or have little kids?
-How do people who know you are trying to conceive treat you?
-What have people who don’t know what you are going through say to you?
-What is the actual experience like when dealing with shots, pills, hormones, ovulation predictors etc.?
-How does infertility or trying to conceive affect your everyday living: job, friendships, finances etc.?
-What has it done to the way you view yourself: self-esteem, self-worth, self-love?
6. Sex/ relationships
-What has endo done to your sex life?
-How do you keep a romantic relationship going when your life is consumed by the endo?
-What methods do you and your significant other utilize to make sex easier/less painful?
-What has it done to your relationships with your significant others, family members, friends, coworkers bosses, strangers?
-When in the relationship do you tell your boyfriend/girlfriend that you have endo?
-How does endo affect your dating/social life?
-What does your spouse think of your endo/ how does he or she deal with it?
-Which relationships in your life have been supportive throughout your ordeal?
-Which relationships were destroyed due to endo?
-How do you like the significant people in your life to treat you?
-What are some things that the significant people in your life do to show that they are there for you?
-Have you made any relationships because of the endo?
-What made you decide to have a hysterectomy?
-Who of your close family/friends did you consult when deciding whether to have it?
-Did you get a second opinion?
-How did you feel in the days leading up to the hysterectomy?
-How did you feel after the hysterectomy?
-Did you have or want any children before the hysterectomy?
-Do you find yourself wanting (more) children now?
-Is it painful to see pregnant women or women with little children?
-How did your significant other feel about the hysterectomy?
-Do you stand by your decision to get a hysterectomy or do you regret it?
-Did you get a hysterectomy thinking it would ‘cure’ your endo?
-Did the hysterectomy help with the endo/ do you still have pain?
-Did you use hormone therapies after? Why or why not?
-If not, do you have menopausal symptoms?
-How has your life changed since the hysterectomy?
-What hospitalizations have you had and why?
-What does it feel like to be in the hospital because of endo?
-What were your experiences like in the hospital?
-What surgeries have you had and why?
-Were they helpful?
-Did you try other treatment options before you decided on surgery?
-How did you feel before the surgeries? After?
-Did you have any unique experiences with any of your surgeries or hospitalizations?
9. Life with endo
-How has having endo affected your daily living?
-How has having endo affected your job?
-Have you connected with others who have endo?
-Do you have a support system that helps you cope?
-Have you joined any support groups? Do they help?
-How do you deal with being a mother, daughter, wife, sister etc. while having endo?
-What are other symptoms of endo that affect your life (fatigue, stomach issues…)?
-How do those symptoms affect you and your life?
10. Overall words of wisdom
-What words of strength do you tell yourself to help you get through the day?
-What have you learned from having endo?
-What would you tell someone who is newly diagnosed?
-Have you learned anything from other women with endo?
-How do you stay strong when the going gets tough?
-Do you have a faith or religion that helps you stay strong? What does it teach?