I’ve been debating writing a post about this for ages, and every time I start I stop again. However, a good friend reminded me that I’ve read countless blog entries and articles and things about the same things that I’m going through, so it can’t hurt to be honest here and potentially help someone else along.
That said, if you have trouble talking about the female reproductive system, you should probably skip this entry.
I’ve written before about the fact that I may have endometriosis, but that there’s no guarantee and no specific treatment. What I haven’t written is an update about what I’m going through and how things are working out.
In short, they’re not going so great. Before I get started though, let me explain about endometriosis. It’s not something that gets talked about often (and even appears to not be an actual word, according to WordPress!).
Endometriosis is the growth of tissue, similar to the kind that lines a woman’s uterus, elsewhere in her body. That ‘elsewhere’ is usually in the abdomen. This misplaced tissue responds to the menstrual cycle in the same way that the tissue lining the uterus does: each month the tissue builds up, breaks down and sheds. Menstrual blood from the uterus flows out of the body through the vagina; however, the blood and tissue from endometriosis has no way of leaving the body. This results in inflammation and sometimes scarring (adhesions), both of which can cause the painful symptoms of endometriosis and may contribute to difficulty getting pregnant.
Every person experiences endo differently, too, but the biggest factor is ridiculous amounts of unexplained pain. This is different than what a woman “normally” goes through during her period – for me, I’m in pain just about every day, all day. I’m stingy with painkillers, but they only reduce the pain down to a dull ache anyway. If I don’t have to be anywhere, I’m curled up with a heating pad or my heated blanket, or lying in a hot bath. I can’t function like a human being.
Now that the explanation is out of the way, let’s talk about my most recent doctor experience. It was different than any other experience I’ve had, in that the doctor started talking about options and seriously considering treatment. She told me that I’m basically a textbook case, but the only way to diagnose endo is through laparoscopic surgery (which I knew). However, she also wanted to do a few more tests.
She performed a biopsy on my uterus to make sure that the cells there aren’t abnormal – she said it’s unlikely but she wants to rule that out. However, what she found out at that point was almost more disturbing than the fact that I needed a biopsy to begin with: my Mirena has gone missing. I’m not pregnant (thank goodness) but they were completely unable to find the device, or at least the part of the device that is usually visible during an exam.
The consensus is that it may have fallen out, and I wouldn’t have noticed because I’m in so much pain and dealing with what I am. However, since we don’t know for sure, the doctor is scheduling me for an ultrasound (again) and an X-ray to make sure that it hasn’t migrated. One thing that I learned at the last ultrasound, after having the Mirena inserted, is that my uterus is tipped, which can cause complications more frequently with the Mirena (or so I’ve read).
In addition to the biopsy, the X-ray, and the ultrasound, the doctor has referred me to an endocrine and reproductive specialist. She said that he’ll be able to do a better job of diagnosing me since he’s a specialist, and he’ll also be able to help see me straight through to any reproductive problems I might have in the future (since this is a tricky disease to manage, and it often causes fertility troubles). So I’ve got a referral in to see him, though I don’t know when, and I’ve got a request for blood work to be done next month to check hormone levels and things like that. In theory, he’ll do the surgery (the laparoscopy and excision of anything that he finds while he’s in there) and I’ll be treated for a while – there is no cure, so this is the best that I can hope for.
Am I scared? Terrified. I’ve read a lot of blogs and articles lately, like I said, and I’ve found comfort in getting as much information about this tricky disease as I possibly could. I know what the surgery looks like (even watched a surgeon’s camera video of it from the inside) and what they’re going to do, and what the scars look like after, and how to handle recovery. I get it. I understand it. (I process things through research and learning as much as I possibly can so that I’m not caught in the headlights.) But I’m still scared.
Mostly, I’m full of what Mark calls my “what ifs”:
- What if they can’t find anything during the laparoscopy?
- What if they can’t find the Mirena?
- What if they do find something during the laparoscopy, and can’t or won’t remove it all?
- What if something happens during the surgery?
- What if the biopsy comes back abnormal?
- What if I have a job by the time all of my referrals go through? How do I get time off of a new job to recover from surgery for at least a week and go to all of these appointments?
…and on, and on, and on. My brain is a questioning sort of brain, and I generally handle them. It’s just a bit on overload right now. Here’s hoping it all gets taken care of soon – I want to move on!