Welcome to the KingZoo and Funny Farm, where we learn to live, laugh, and love together. Here you'll find snippets of life in our zoo, parenting tips we've learned along the way, reflections on shining God's light in this world, passions in the realm of orphan care, and our journey as parents of a visually impaired child with sensory processing disorder. Have fun!

Wednesday, January 5, 2011

TMI warning

I am home and resting after surgery yesterday. This has been a long time in coming and should bring to the end a painful 20+ year journey with endometriosis. And that is why I am writing this even though it might be too much information for some people. I will admit that most of this post was written in my head while under the influence of Percecet yesterday so I may regret it later but if it can save a young girl from a repeat of my journey, then it is worth it.

Back when my relationship with endometriosis began, there wasn't much known about the disease. Even if I had known that something was wrong and had sought the help of a gynecologist as a teenager, it's likely that I wouldn't have gotten the correct diagnosis. But I wasn't looking for help. I thought all of my pain, nausea, and strange symptoms were normal and that there was something wrong with my ability to deal with pain. It wasn't until college, when other symptoms appeared, and the pain sometimes became unbearable, that I sought help from the medical community. Sometimes seeing a doctor at college, and other times waiting until I was home on break, we still weren't able to put the pieces of the puzzle together and a diagnosis never came.

It wasn't until I was teaching, and sometimes struggled to make it through the day upright, that I decided to really pursue some answers. By this point I had only one pain-free week each month before the whole cycle would start again. Thinking that it was intestinal-related, I went to a GI specialist. He promised to get to the bottom of it and was one of the nicest doctors I have ever met. But after exhausting every possible diagnosis he could come up with, he said these words, "I think you might have endometriosis." I had never heard of it before but was willing to try anything. He gave me the names of two different doctors I might try.

When I called the first one and the receptionist told me she could get me an appointment in 3 months, I told her I'd be dead in three months (I was only half kidding, I truly thought I might be dying), and hung up. I called the second one and they could get me right in. That should have been a clue that I really didn't want to see this guy. Turns out he's an old army medic who thinks his patients are all trained fighters. In a not-very-kind way he told me that there was no way I was having pain, there's really no such thing as endometriosis and that there wasn't anything wrong with me, it was all in my head (note: I had three ultrasounds from three different times in hand to prove that I had cysts where cysts didn't belong). I went home ready to give up on doctors and the whole thing, believing that maybe it was all in my head. If it wasn't for John's encouragement to continue, I may have given up on ever finding an answer.

When the GI doc heard about my experience he was truly sorry that he sent me to that particular doctor. He said he'd call the first practice I had tried and see if he could get me in earlier. And he did. The doctor he sent me to was awesome, agreed that I probably had endometriosis, scheduled surgery to officially make the diagnosis and was with John and me through the whole infertility issue that came with the diagnosis. I can't tell you how many times he went out of his way for us in the process of endometriosis and finally having children. One time he came into the office on a Saturday to do a test that absolutely positively had to be done on that day. He chose to be there for Andrew's delivery, even though it was his day off, and welcomed Andrew into the world even though it meant he was late to pick his son up from school. Oops. I was sad to leave that practice when we moved and have not yet found someone as knowledgeable and as kind as he is.

There is no cure for endometriosis but there are medications and procedures that can lesson the symptoms. And for some, pregnancy is a great treatment. Thankfully, this was true for me. Not only did I feel better when I was pregnant than when I wasn't, the endometriosis itself stopped growing and I had relief for quite some time even after delivering the baby. It's always hard for me to listen to people complain about being pregnant. For some of us, not knowing if we'd ever get to experience pregnancy, I think we learned to accept, and to even enjoy, every aspect of it. What's a little discomfort, weight gain, fatigue and morning sickness when it's a whole lot better than not being pregnant at all?

All this to say that it should not take someone 10 years to get a diagnosis. So for any parents of teen girls, be vigilant. Listen to them. Extreme abdominal and back pain and frequent nausea are not normal. Even if the symptom seems totally unrelated, take it seriously. Endometriosis can be anywhere in the body. At one point it was in my lungs and I coughed up blood. Who would have thought?

Even though there is no cure, there are medications and treatments that can help. This isn't the dark ages of gynecological medicine. I never want to hear of a young girl in the twenty-first century going through what I went through with endometriosis.

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