That Disease I Have
The pain started when I was 13. My irregular periods were long, painful and not eased by pain killers. As years went by, the issues progressed until I was in excruciating pain almost daily. I would bleed for 60 days at a time and then not again for three months. The stabbing pain plagued my back, abdomen and uterus but hey, everyone "has cramps," right? Um... not like this. I knew something was wrong but my complaints were usually just perceived as the overreaction of a hormonal girl.
I began seeing different OB/GYNs in hopes that someone could give me answers. After multiple types of birth control, pelvic exams, ultrasounds and sonograms, I had been given everything from the possibility of ovarian cancer to "just bad periods." As you can imagine, I was starting to get (more than slightly) irritated and decided to research for myself. The symptoms continued to line up with one word: endometriosis, a chronic disease in which the endometrial lining grows outside of the uterus. I had literally no clue how it was pronounced so I did the obvious.... printed out the Google search and brought it to my next appointment.
One doctor insisted that because I was young and healthy, it didn't make sense that I would have endo. I told her that I wanted the surgery. If she wasn't going to perform it, I would find someone who would. A few weeks later, I had the laparoscopy.
I woke in the recovery room with the diagnosis of stage two endometriosis and 27 places of burned lining in my body. [The stages (1-4) are not classified by pain experienced but the amount of adhesions present.] Here's the problem, the diagnosis only left me with questions. I went home from that surgery with no information, no expectations, no resources and no clue what to do next.
You see, although endo affects 176 million women worldwide (1 in 10 females in the US), it is one of the most under-researched issues in women's health. In addition to being one of the leading causes of infertility, the symptoms of pain and fatigue loom over women in different extremes. There is no known cause of endo and contrary to popular belief, it is not even promised to be cured by hysterectomy. Oddly enough, most things I know about endo, I found on my own. I read journal after blog after medical study until I understood what my diagnosis meant.
Most women don't have the luxury of getting answers as early as I did. On average, women will go through seven doctors and ten diagnosis before receiving the correct one. That's more than slightly crazy.
After my surgery several years ago, I got an IUD in hopes of keeping away endometrial lining. Just few weeks ago, after months of intense pain, I went in to find that the IUD had turned almost 180 degrees inside my uterus and that I have an ovarian cyst on my right ovary. Fun times.
I'm not going to sit here and tell you that having this disease is easy. Because it's not. Most people don't know it exists or don't like to talk about it because it seems bizarre for whatever reason. BUT, I'm also not going to let it control my life or throw myself a pity party. In my hopelessness and fearful thoughts, I know that that Jesus is greater. Endometriosis is just something I have, not who I am. I believe in living a life that is full and beautiful despite the thorns.
S I D E N O T E //
- If you know someone that has symptoms of endo (which can start as soon as puberty hits), encourage them to have a laparoscopy. It's the only way to diagnose and temporarily ease some of the pain.
- Don't think the pain is less real because someone "looks good on the outside."
- Each woman struggles with endo differently. Some don't find out about it until their hysterectomy at 50, others can't work due to the intensity of their symptoms.