So I officially had my first radio interview! I had the pleasure of speaking with therapist, author and infertility advocate Victoria Hopewell about endometriosis. We spoke for a half an hour about what the disease is, the fertility and overall health implications of the disease and finally talked about how patients can be empowered by advocating and joining endometriosis communities.
Here it is!
Endometriosis Interview With Victoria Hopewell
Sunday, July 7, 2013
I have been trying to write this letter for some time now, but it is so hard to put into words what I have been going through. I fear that my delay in explaining my past behavior has worsened the strain on our friendship. But if there is one message to convey to you in this letter, it is that I have done and always will do the best that I can. It is just that sometimes my best falls short, and I have finally figured out why.
Last week, my doctor performed laparoscopic surgery to explore my abdomen, and he found what he had suspected all along—the presence of a terrible disease called endometriosis. I should have told you sooner, my dear friend, but it has taken me a while to wrap my head around this harsh sentence of chronic pain, infertility and many other unpleasant symptoms.
I know you’re wondering, “What is endometriosis?” Well, all women have a lining in their uterus that builds up and then sheds during their menstrual cycle. But for women with endometriosis, this uterine lining escapes the uterus and attaches to other organs, the pelvic wall and the ovaries, and can even travel as far as the kidneys, the lungs, and even the brain. Wherever it is implanted, this lining thickens and bleeds during the menstrual cycle, causing scar tissue, adhesions and blood-filled cysts. This condition is not natural and is incredibly painful. After my surgery last week, my doctor told me “There wasn’t a place in your abdomen that didn’t contain endometriosis. Your abdomen was filled with the disease.” Adhesions had grown over my ovaries, causing them to stick to my pelvic wall, which made my monthly ovulation excruciating. Parts of my urinary system were also attached to my pelvic wall, and endometriosis was found on my bladder, which would explain my constant need to urinate. Finally, the disease had spread to my bowels and my intestinal tract. Now I know the cause of my horrible stomach issues for the past 15 years!
Recovering from surgery has been really hard, but what I think is harder is dealing with the diagnosis of endometriosis itself. There is no cure for this terrible disease, and because it is often dismissed as a non life-threatening female condition, there are very few researchers studying it despite the enormous impact it has on 1 out of every 10 women. The only real treatment is surgical excision, but this is not a cure. There is a good chance the disease will continue to grow and I will have to have many surgeries throughout my life to treat it.
I am writing all of this to you in an attempt to explain what has been going on with me, and what you have been noticing, for years. You probably thought I was a hypochondriac. Mirriam-Webster defines hypochondria as extreme depression of mind or spirit often centered on imaginary physical ailments. Honestly, until I had my surgery, I wondered if it was all in my head! I recall all of the times I had to cancel on you at the last minute because I had my period and was in so much pain. When I was feeling well enough to meet you for dinner, I would often have to go straight home afterwards because my stomach was upset. I am plagued with guilt when I think about that time I couldn’t help you move because I was ovulating and couldn’t even stand up straight. I will never forget when I missed your big party because my period left me so dizzy and nauseous that I couldn’t make it out of bed. There are so many things I missed out on because of this disease. There have been so many times I have let you down.
I want you to know my disease is real. My pain is real. I know I may have come off as flaky, unreliable and even at times apathetic to our friendship. I know I may seem high-maintenance because wherever I go I need to have a bathroom close by, and I can only eat at restaurants that have a menu that won’t upset my stomach. I know that being my friend means you have to be extra flexible and understanding all the time, which must be exhausting. Endometriosis often leaves me exhausted, and there are many times I want to give up on myself. But I won’t give up, because my life is worth fighting for.
Despite how my disease has challenged me, it has also made me a better person and in turn, a better friend. I am stronger because of it and can be strong for you when you need it. I rely on hope and grace to carry me through the most difficult times and can share these wisdoms with you. I have learned to appreciate the wonderful people in my life and hold them close. I remind myself every day of what I have to be grateful for. If you stand by me, I will be the most loyal friend you have. I don’t sweat the small stuff. Little things like a functioning heating pad and dairy-free ice cream make me incredibly happy. Handling this disease and facing all that comes with it require an excellent sense of humor. How else could a person deal with highly invasive medical tests and ridiculous bowel symptoms? I can share all of this and more with you if you choose to stick with me through this.
I hope my diagnosis helps you understand my situation a little better. I encourage you to research endometriosis for an even clearer picture of what I am going through. I encourage you to ask questions. I promise I will talk about it with you. I will let you know how I am feeling and why. I will be open and honest with you at all times.
As you can see, with my new diagnosis I need friends more than ever! Right now, I am overwhelmed with the thought of what endometriosis means for my life and my future. Will I be able to meet someone who will want to date me with all that comes with this disease? Will I ever get married? Will I be able to have children? How will I manage to live with a disease that has no cure and very few effective treatment options? These are big questions that I don’t expect you to answer. They have no answers. What I am hoping is that after you read this letter you will want to come over and watch a movie with me. I have a pint of chocolate coconut ice cream in the freezer, and seeing you would make my heart happy.
Your friend with endometriosis
Posted by Casey at 7:21 PM