Seven years ago, I remember sitting in my doctor’s office when I first heard her say, “I think you may have endometriosis.” At that point, I only knew two things about endo: 1) it has something to do with scar tissue and 2) it can cause infertility.
Surgery was scheduled and on September 17, 2003 it was confirmed that I had endometriosis. A month later I signed myself up to start Depot Lupron. My biggest mistake was not starting to research my disease until after I began a treatment that I knew nothing about.
So let my loss be your gain! Here are 3 things that I have learned over the last 7 years that I wish someone would have told me when I was diagnosed:
- Educate Yourself. Read books. Research online. While you cannot trust everything that you read on the internet, there are awesome resources out there! I completely regret not research Lupron before starting treatment as I know that if I had taken the time to do so, I would never have taken it and I know that I would be have been better off.
- Find Support. Thankfully this was something that didn’t take me too long to do! Several months after getting diagnosed, I discovered the GirlTalk program through the Endometriosis Research Center and I am so glad that I did! It has been such an amazing encouragement having a group of ladies that can truly say “I know how you feel.” We have shared our stories, compared treatments, and given a word of hope. I cannot say where I would be had I not found support within such a community. Whether you find a support group in person or online, it is so essential to keeping a positive outlook when facing endometriosis (or any other chronic illness). Also, if you feel the need to see a counselor (or even an anti-depressant), do it! Don’t feel as though seeing a counselor makes you “weak” or “crazy” when in fact it will make you stronger. This journey is long and difficult so build a support team to help you along the way!
- Become Your Own Advocate. You know your body better than anyone else. If you feel in your gut that something is wrong, then it probably is. Don’t let your doctor push you into a treatment that you don’t feel comfortable with. If you feel like something has been missed, speak up. If you feel like you are not being taken seriously, seek a second opinion. Even if you love your doctor but feel like you are out of options, still ask for a second opinion. I was lucky enough to have a wonderful doctor from the beginning and while I cannot say enough awesome things about her, we reached a point where we felt stuck so I asked for a second opinion. My doctor’s feelings were not hurt and in the end, I think we both benefited. In the end, you must stand up for yourself and most importantly, listen to yourself.
I hope this information can help you at any point in your journey with endometriosis!