…and the ball is in motion, the die has been cast, and all that jazz…
In my journey back to all things healthy and sane, this morning my husband and I went to visit Dr. R. to get a second opinion about the necessity for hysterectomy and to get a feel for which doctor we felt would best meet my needs.
Both doctors have been around the block a time or two, and I don’t think I could go wrong with either of them. However, the one-word description my husband had for Dr. R. is “thorough.” Whereas Dr. C. came across almost as cocky in his confidence, Dr. R. actually explained technical details and the pros and cons of different procedures.
Not Knife Happy
Dr. R. is more conservative than Dr. C. I get the impression that he’d rather try all avenues first and then let hysterectomy be a last option. He laid out several options for me, including some that Dr. C. dismissed out of hand as treatments that he said wouldn’t work, such as ablation and a diagnostic laparoscopy. Having said that, he was clear that if I am already at the end of my rope and am ready for the solution that gives the highest odds of relief, then hysterectomy is the answer. The other options have a high percentage of not working. For example, the ablation might help 30% of patients with pain like mine. Diagnostic laparoscopy might help the pain for a little while, but if the main pain is adenomyosis, then it wouldn’t help at all. Even if the main pain is endometriosis, keeping the ovaries means my body will continue to produce hormones which will then trigger more endometrial growth. Vicious cycle. The bottom line is they won’t really know what’s going on inside until they take a look, knife in hand.
To remove the ovaries or not…that is the question
If my symptoms were clustered around the week to fourteen days that Aunt Flo visits, then the answer would be simple: keep the ovaries. Ovaries provide beneficial hormones — there is a reason God gave them to us, after all. They reduce our chance of developing osteoporosis and heart disease. However, my symptoms are not limited to Aunt Flo’s visits. Rather, they are spread out all over the month. I know this because I’ve been keeping a symptoms diary since April of this year where I note the date as well as the day in my cycle that the symptoms occurred. Here’s a typical entry:
July 8, 2011
low back pain
nighttime wakeup with burning hunger
A look back through my diary shows that without fail, I experience bloating, nighttime wakeup with burning hunger and/or nausea, pelvic pain, and restless legs on and around days 13-18 of my cycle, give or take a few days. For the past couple of months, the burning, constant hunger pains have spread into the daytime hours as well, which made last week the straw that broke this camel’s back. This symptom lasted longer this past month than it had in previous months — so much so that I was afraid that perhaps I had developed an ulcer or some other horrid stomach disorder. But then these last few days that constant hunger has tapered off to the point where I can actually sleep at night…just as it did, like clockwork, on all the other months as I approached day 20 of my cycle.
(Side note: I highly recommend keeping a diary of your symptoms. Doctors spend a snapshot of time with you and will not be able to spot patterns like this one. Keeping track of your symptoms helps you and your doctor see whether or not there are patterns to the symptoms.)
And the cycle continues. As I look back through the months, there has not been even one day that I have been pain and symptom free. Not.One.Day.
What Hubby Thinks
My husband just wants me to be well — whatever it takes to get there. He doesn’t say it, but I think he wants the old “me” back. He stands ready to support me in this surgery and didn’t even cringe when the doctor explained surgical procedures in the office today. He’s willing to take off work and be my hands and feet for as long as I need him. I cannot express in words how much it means to me to have his support and his input.
Dr. R’s Thoroughness
In addition to explaining exactly what adenomyosis and endometriosis are to my husband, Dr. R. spoke at length of different surgical techniques. In particular interest to me was his opinion on the da Vinci assisted surgeries. He does not use the robot, and he succinctly explained why hands-on is better for the type of surgery we’re looking at (LAVH – laparoscope-assisted-vaginal-hysterectomy). If extensive sewing is needed, say, to remove fibroids, then the robot is a good choice. I felt better about my decision to stick with human hands instead of Data’s (had to throw in another Star Trek reference) after talking to Dr. R. today.
Like Dr. C. explained yesterday, Dr. R. also made sure I understood that any LAVH surgery could become an abdominal surgery if the surgeon encounters problems that can’t be handled with the laparoscope. One example would be a situation where my uterus has become adhered (stuck) to my bladder in such a way that he has to separate them and needs a full view rather than the view through the laparoscope. He also said any surgery carries risks to other organs…but he said the risk, in HIS hands, is very, very, very, very, very low. In fact, he told me out of all the hysterectomies he has done, he has never had a patient come back and tell him she wished she hadn’t. Most of them who have had years of pain, like me, say that they wished they had done it years ago. I hope that’s me!!
Dr. R. also spent a good deal of time talking to me about hormone replacement therapy, paying special attention to my medical history. Doctors are reluctant to give me hormones of any kind because I have anticardiolipin antibodies in my blood. I won’t bore you with the technical details, but these antibodies make me more susceptible to blood clots if hormones are administered orally. However, my particular antibodies are IgM antibodies rather than IgG. I guess if you’re going to have elevated antibodies, Igm’s are better than Igg’s because Dr. R. said the IgGs are the ones most associated with higher clotting. The outcome he recommends, if I decide to remove everything, is to put me on a hormone patch so that my liver won’t have to process the hormone, thereby reducing my clot risk. Phew. If you understood anything I just wrote, you are smarter than I am. I feel like I am swimming in the alphabet!
Dr. R. mentioned that one thing he does differently than some other surgeons is to administer numbing agents to the incisions. This is actually a step I was going to ask about because I’ve read that fibromyalgia patients do better in surgery if the incision sites are numbed with long lasting agents. I was glad to hear that Dr. R. does it to all his patients. The less pain, the better!
A rolling stone…gathers a surgical date
After meeting both doctors, I’ve made the decision to move forward, roll on, take the next step, and kick the bucket. Wait, hopefully not kick the bucket, but you get the picture.
I think I would do fine with either surgeon, but I feel led to Dr. R. He was a better communicator. He was not pushy. He has performed this kind of surgery “thousands” of times and knows what to look for. He volunteered other options. Best of all, he did a hysterectomy on my neighbor and friend who had, throughout her lifetime, a series of gynecological surgeries with different doctors. She told me that hands down, Dr. R. was the BEST surgeon she ever had, in his bedside manner, his attention to detail, his communication with the family, etc.
I called his scheduling assistant this afternoon and will have a surgery date on the calendar sometime tomorrow. (not surgery tomorrow…but a date.) Hours need to be established with the hospital and assisting surgeon, etc. (That reminds me: I need to find out who his assisting surgeon is!)
When my surgery is scheduled, I will have a pre-op appointment to go through. He’ll do another sonogram and exam just to make sure everything is the way he expects.
Anxiety is bubbling, people. I’m actually doing rather well, considering. My primary concern now is that the surgery will be scheduled during my HORRIBLE stomach time. I know that God knows my body and my anxieties. Having anxiety about surgery will be magnified if I’m already anxious and dealing with a rock-hard, bloated, always hungry, always nauseous stomach. I wish a miracle would open up surgery for NEXT WEEK because my daughter has her Fall Break next week…that would be ideal. So pray for that for me, okay? It also would prevent me from getting cold feet. Barring that, pray for God’s will to be done in me and for grace to make it through, no matter what timeline it ends up following.
I still cannot believe that I picked up the phone and dialed TOSCHEDULEMAJORSURGERY. I am sick of being sick and am ready for healing any way God chooses to bring it….hopefully in this life and in this body, so I can serve him again for His glory…but it is HIS timeline, not mine.