Most of my friends here in MD are aware of my condition, and they usually have questions about it. I'm more than willing to be candid, and I realized that quite a few people have probably never even heard of endo, especially since it's one of those diseases that is absolutely not identifiable by outward appearances. So here's bit of information and personal experience:
Disclaimer: The rest of this post may be a bit TMI, but I'm not embarrassed so you shouldn't be, either. Anyway, start here. I really like dot-gov sites because I know it's pretty factual. And the NIH is pretty awesome, and their site gives a very basic definition. It doesn't sound that bad, and for some people it isn't.
But for me it was (like that past tense? 'Cause I do!). I always had very painful periods, from the very first one. I took prescription-strength Naproxen like it was candy all through high school, and at my first ever GYNO appointment the doctor put me on birth control because she said pain that extreme wasn't normal for an 18 year old.
By this time I was living in Auburn, and driving 3 hours to Anniston for doctor's appointments isn't conducive to low-income college living, so I found a new doctor in the area. He didn't really care about my pain as much as the cost of my BCP, and kept changing my prescription to whatever was cheapest. I really do appreciate the thought, since I was a broke college kid, but I think the constant hormonal fluctuations is was caused the condition to flare.
By the Spring of 2009 I was in pain and bleeding constantly (that's the TMI part). Like, every single day, even though I was still on BCP. My Mom had dealt with similar problems and told me to go to her GYNO, even though he was 3 hours away, because he was good. And he was. In my very first visit he found several cysts on my ovaries, one the size of a quarter. He said it had to go immediately because if it ruptured I could lose the ovary. Surgery was scheduled for the next week.
What was supposed to be a 30 minute drain the cyst and get out of there surgery turned into nearly 4 hours. He found very severe endo growth all over my ovaries, fallopian tubes, and outer uterus wall. He used a laser to remove everything he could see but warned me that it would grow back, and that there was probably some he missed but he just ran out of time.
The 6 weeks after the surgery were amazing, but then the pain came back. I know I keep talking about 'pain' like you understand. It's like labor pains. I've obviously never had a child, but when I got the Mirena the doctor induced labor (supposedly that makes it easier but I'm not convinced) the night before. It was awful. Anyone who's ever had a child has my compassion. But that's the closest thing I know to describe the pain. For non-moms, it's like a toothache, or an earache, in my lower abdomen. And it kind-of burns. And then my lower back starts hurting and the intensity grows until I can't move, because moving makes it worse.
But anyway, you pretty much know the rest of the story. A year later I ended up on Mirena, and it helped with some of the other symptoms but not with the pain. Some women I've read about have worse endo than I do, and have to have laparascopic surgeries at least once/year to remove the growths. I don't think I'm that bad off, yet. I do want to have another lap to 'wipe the slate clean' again, but I'm not going to just ask. It will happen soon enough, I'm afraid.
So now maybe that's provided a little bit of insight to this disease that doesn't really seem like a disease since you can't identify anyone who has it by any outward appearances. It is real, and it isn't any fun.
On a brighter note, I'm going shopping after work today so I'll have a list of soy-free items to add to the blog.
