what to do?

Two years ago, I was having intense pelvic pain—during and after my period, during and after sex, resulting from an overly full bladder, etc.. Any stimulus would trigger several days of pain, ranging from vague cramping similar to early labor to pain so severe that I nearly passed out multiple times. Through a series of tests, my doctor discovered that I had a small fibroid tumor and an endometrial polyp. Although I had a weak afternoon when I begged for a hysterectomy, my gynecologist believed in saving the uterus whenever possible. In January 2007, I had a D&C, hysteroscopic resection of the fibroid, and an endometrial ablation.



Over the past 8 or 9 months, I’ve begun experiencing pain again, gradually increasing from discomfort to the same kinds of pain I had before. Although I haven’t resumed bleeding, there have been signs that the endometrial lining is beginning to build up again. In April, my gynecologist retired, so I made an appointment in June with one just down the hall. She commented that Dr. R. had written really long notes and asked me to tell her what had been going on rather than read it for herself. She recommended an ultrasound.


I put off the ultrasound for months, since the one I had in November 2006 (pre-ablation) was so extremely painful and I couldn’t stand the thought of having to drink all the water. Last week, I realized that I was having pain bad enough that I had to just suck it up and do it. So, Friday afternoon I had an ultrasound. This one was somehow more bearable than the one two years ago. The ultrasound technician said that she saw what looked like a 1-cm fibroid, which is what I’d had before and was no surprise. I was a bit relieved, in fact, to confirm that this was the cause of the pain.


Over the weekend, I began experiencing severe pain triggered by the ultrasound, just like I did during my periods pre-ablation. In fact, Sunday and Monday I was so light-headed and in so much pain that I considered going to the hospital. Instead, I was able to get a prescription that took the edge off the pain and let me sleep.


Today I called the doctor’s office to see if the ultrasound report had arrived. I had two separate conversations with the nurse, both of which I found upsetting.


Conversation 1: “The doctor says that your fibroid is stable and you don’t need to be seen unless there’s any change.” What??!!! I asked her what she meant by “stable,” and she said, “There’s been no change since your previous ultrasound in November 2006.” I asked how that could be the case, since the fibroid that showed up in November 2006 had been removed in January 2007. If there’s a fibroid in the same area, it’s not the same one that I had before. I realized that the doctor had simply read the report from the radiology department without even looking at my file. The nurse said she would share my comments with the doctor and that I would be contacted again.


Conversation 2: “The doctor thinks the fibroid is not causing your pain, that it’s a failed ablation and the endometrial lining is beginning to build back up. You’ll need to come in for an appointment and discuss your options. And don’t quote me on this, but that might mean a hysterectomy.” After thanking her (!) for getting back to me, I said that I would prefer not to go that route but that I looked forward to discussing all the alternatives with the doctor. Okay, I’m not a doctor, and I don’t know what actually causes pain. However, I would argue that while the rebuilding endometrium may be triggering episodes of pain, it is the fibroid that is the underlying cause. My previous doctor commented that the previous fibroid had been propping my uterus open just enough that my sensitive uterus was constantly on alert to contract. I am hoping this is just an instance of a nurse speaking out of turn, but I want to be prepared.


I have an appointment scheduled for Tuesday to discuss options. What are the right questions for me to ask? What are some of the benefits of retaining a uterus that aren’t related to childbirth? If I end up seeking a 2nd, 3rd, or 4th opinion, what are the relevant facts to include? What questions do I ask, and what answers do I want to hear? At what point do I decide that hysterectomy is an acceptable option?