Keep On Keeping On…
…or a more catchy title for a health update. (Hey, I had to get you to read this somehow!)
Alrighty…so, after perusing my blog, I realize the last update I shared was regarding surgery…that was back in November! Not a ton has happened between now and then, I mean, at least not physically or procedurally, but I’ve realized some things on this stretch of the trip, and felt like sharing those musings with you…the unsuspecting public. This will be the first of a few longer posts, so feel free to skim…I won’t be offended.
Recovery went all right after surgery (which was 11/08/2014). No major set backs, aside from the hard hit I took from the anesthesia. By about the third or fourth day I was back to being coherent and actually remember things going on around me. Our post-op appointment was scheduled for the day before Thanksgiving. (Side note – I was just rummaging through all my other notes, posts on other sites, etc to make sure I didn’t stray from the facts – you think I can find it?! I SWEAR I wrote this down somewhere…hmm…Have I ever mentioned dementia runs in the family?) The appointment was in the afternoon, which was nice – no need to return to work…which turned out to be a huge blessing.
I was so anxious and stressed over this appointment – I mean, we knew what was wrong, but there didn’t really seem to be many options for us. Sitting in the doctor’s office – not an exam room, but his actual office – didn’t help! He came in, and explained again the condition of my innards, and shows us the images from surgery. Holy sticky mess, Batman! You know when you step in bubble gum – it spreads out, like a web, and attaches to anything that comes into contact with it. That’s what it looks like; the endometriosis adhesions are attached to my bowel and bladder, which are “glued” together in front of my uterus and ovaries.
He proceeded to explain how he wasn’t really able to do much during surgery, and then delivered our options to us:
Option One: more extensive, invasive surgery (laparotomy) much like a C-Section; he would try to separate the bowel from the bladder, and the ovaries from whatever they’re attached to. Doing so is risky, obviously any time you involve other organs and trying to cut around them you run the risk of nicking the organs, or possibly removing large sections of them. He cautioned that while he’s confident he could do it, he would need various surgeons on hand and there is the risk that once he gets in there and starts cutting or removing things, there may be no turning back – it could result in having to remove ovaries or my uterus.
Option Two: Try a medication called Lupron. Over time, it turns off hormone production which tends to “feed” the endometriosis and can give it the opportunity to shrink the adhesions. Because it messes with hormone levels, there are some serious side effects; the medication basically puts your body into an artificial menopause, and can also alter your mood, and cause bone density issues. It is not, however, permanent – you receive injections (either monthly or once every three months) and slowly, your cycle shuts down. It can be reversed, stopped, and my doctor only prescribes this with an “Add-Back” therapy – you supplement the injections with a daily low-dose estrogen pill to help keep the hot flashes at bay and mitigate the potential bone density issues. My doctor strongly warned me against reading posts online about this medication – he acknowledged that it is not well-received, and people do not think fondly of it. But it’s a good option for people who want to attempt to preserve their fertility.
That was the key phrase – preserve fertility. While my husband and I have been trying to come to terms with all of this, we’ve resigned ourselves to trying to make ourselves OK with the idea that we may not be able to have kids. This has been the most crushing blow of the whole diagnosis. But, given our respective ages (did I ever tell you I married an older man? swoon! (fine – it’s only by a few years…but STILL!)) we aren’t too keen to experience a risky pregnancy. And before you get all preachy and tell me that hundreds of women are able to have kids with endo, or there are a ton of ladies who are ‘older’ having kids…it’s just not something I’m interested in.
Coming up next – how do you make an educated decision when there is so much fear-mongering in online communities?