Because I’m posting this on April 1, I feel compelled to begin by saying this is not an April Fool’s joke. It’s also not about books or writing, so if you’re subscribed for that stuff, feel free to skip. This is the full story of my weekend hospital adventure, with a coda now that I’ve been to see my regular OB/GYN yesterday.
The short answer is that I went into the hospital not because I have “some cysts” which were causing pain. I had a ton of endometriomas (chocolate cysts they call them–gross) and severe endometriosis. It’s all over my pelvic cavity. All over. I have “frozen pelvis,” which means every pelvic organ is locked up because of the level of endometriosis in there. My uterus leeches out endometrial lining, it attaches all around my pelvic cavity, and every time my ovaries turn on, it makes those cells grow. The only way to stop it is to remove the affected tissues as much as possible, my uterus, and my ovaries. In fact this is so severe in the meantime they are shutting me down chemically. As soon as they wrangle with my insurance, I get an injection which will begin shoving me chemically into menopause until they can go in and surgically do so.
Not only will I be having a full hysterectomy, I won’t be having a laproscopic one, because my doctor is wants a clear line of sight on everything and wants to take all the endometriosis she can, and she worries doing it laproscopically will mean she misses something or cuts my urethra or bowel or something very bad. So this will be a full-on six week recovery from major surgery. They want this to happen sooner rather than later, too–hence the chemical menopause until we get the job done.
I have to say, I don’t know quite what to think about this all yet. I knew over the weekend I had more surgery, but initially I thought I could keep my ovaries. I understand why I can’t–if it’s so bad and so pervasive, keeping my ovaries will mean the endometriosis will keep growing. Removing the endometrium alone does nothing at this point–I’ve farmed out so much of my uterus into my pelvis, it can regenerate itself in fucked-up form at will. I feel weird about it, and sad, and angry. This doesn’t exactly explain everything that’s ever been wrong with me–there’s some evidence that this might go chicken-and-egg with auto-immune issues, which I clearly have in some manner…but it’s not like doing this will make all that go away. Maybe calm down, maybe not.
That definitely bothers me. It makes me angry that I’ve basically lost ten years I should have been able to be ten times as active as I’ve been because of health stuff, and now I get more crap. It makes me feel cheated because I shouldn’t have to turn menopausal at forty. Hell, I haven’t even fully processed through the version of me at twenty who wanted four, five, six kids and got one. Looking at this, I guess I’m lucky I got the one at all.
I keep trying to do this thing where I decide this will be the moment everything changes, that I’ll do this and it’ll be a bright new dawn of health, that I can climb on top of it and start over at forty. Look back in forty more years and call this my big turning point. I’m not giving up on that vision, but I think this week is the week I’m hurt and angry. The week I ask Dan seventeen times if this is really what I have to do. The week I pout and rage and hide under a blanket and be furious that this has to happen at all.
Objectively I’m glad I don’t have cancer, or MS, or any of the million things which are ten times more horrible than having to have my lady parts removed. Emotionally, though, I’m still stuck in the quagmire of fear and confusion. I think honestly it’s the curse of the modern era. One hundred years ago you could still see death and disease, still feared of living through childbirth and infection. Today we all feel we have the right to live to one hundred. Anything less than 90 is a cheat in our eyes, and we should be able to get there as spry and wily as Betty White.
The truth is bodies are frail, and even with modern medicine, they fail us. The truth is many things should have killed me by now, and that I won’t be crippled by pain for the rest of my life is the real miracle. That I can stop this with very little risk to myself is huge. It’s a good thing. And this really could be a new dawn. I could become a spry Betty White at 90, looking back at this moment as the one my life truly began, at least on some level.
But today I’m just angry and frustrated. Today I still hate the healthy joggers and bikers who aren’t exhausted by life, the people who don’t wake up wondering if they’ll hurt everywhere, who can eat whatever they want and don’t have to think actively about their health. If I’m a Tarot card, today I’m the 10 of Pentacles–I’m in the damn doorway, knowing what I have to leave behind, but not yet willing to walk through the door.
When this happens and how is still being debated. I need to talk to my family about when and how we do this. Maybe July. Maybe September. I’ll be up front and say I might have to pull out of fall activities for this. It really depends on so many things and how they pan out. I’ll keep you posted when I know the details.
To head some of you off at the pass: this gynecologist recommending this treatment is the one Dan picked for me, and Dan was at the appointment. Yes, I really do have to lose my ovaries. Technically this is my second opinion–I’ll be asking a family friend and my MIL for input as well, but pretty much there’s no reprieve from this. I trust this diagnosis because I trust my husband and because what she said to me makes sense. And honestly I’d rather err on caution than wistfulness. I could see ten doctors and it’s not going to change those pictures inside my pelvic cavity. There’s nothing turning off that growth and pain but this.
In any event, that’s my update and where I’m at. Thanks for listening.