Monday, December 08, 2008

On zebras

You know you made the right choice when you already feel better, just three days after major abdominal surgery, than you did beforehand.

Even though the surgery turned out to be a bigger deal than previously foreseen, I'm recovering quickly. I have a 2" incision in my CS scar as well as the laparoscopy ports, which I assume is where the tube was removed, so I have some lifting restrictions and incision pain that we hadn't anticipated. However, it's still better than the pain I was having in that junked-up left tube, and I think in a couple days I'll be feeling like a new woman.

Right now, I have to say that I'm a little angry. Losing the tube shouldn't be a big deal to me, since I was having it tied off anyway, but I'm upset nonetheless. It's not so much that I lost the tube, but that the tube was diseased enough to need removal. I'll know more when the pathology comes back, but it certainly suggests the infection wasn't treated adequately. If I'd been given the right antibiotic or an ultrasound when the infection was first diagnosed, if I'd insisted on a D&C when we found all that stuff in my uterus, if I'd gotten IV antibiotics after the first recurrence, if we'd gone to surgery in early November instead of waiting around until an elective tubal ligation could get scheduled, could it have been avoided?

I understand that my doctor is conservative by nature, and that I didn't have a very high fever or highly elevated WBC. I know she didn't want to rush into potentially complicated (and expensive) surgery or IV antibiotics unless she were positive I needed them. Thing is, apparently I did need more aggressive treatment than I got, because the infection took root and ate up my tube. It might have turned out the same way even if we'd gone after it sooner and harder, but what we did wasn't enough. And I had to fight to get even that much -- she had originally wanted to wait another week after the first antibiotic failed before proceeding to ultrasound, and didn't want to do the lap unless I were having a tubal anyway.

Maybe my presentation really was unusual, and infections which do that much damage generally have more outward signs. To be fair, it's not like she ever suggested it was psychosomatic, just that she didn't see any indications to proceed, other than the pain. Still, she blew the pain off, even when I made it clear that it was affecting my life, and that I felt something was really wrong. And so I lost my tube, maybe my ability to have children, because of it. No, I didn't want to have any more, but what if I had? I shouldn't have lost that option, or have had to push so hard to get the pain taken seriously. If I hadn't wanted to get my tubes tied, this would have gone untreated for months more, and yeah, I'm not happy about that at all.

I really do like my doctor. I think she's very capable, and conservatism is usually a good quality in a physician. However, if we'd been more aggressive at any point along the way, I might have had less damage. Of course, it's a much easier call to make with the benefit of hindsight, and I do understand why she wanted to proceed with caution. Still, she and I are going to talk about whether she should not have been so quick to dismiss my symptoms, just because there wasn't a strikingly obvious cause.


Jody said...

I think your anger is appropriate and well-harnessed. I hope the doctor apologizes, and I hope she re-considers her actions in the future.

Pain should ALWAYS be taken seriously. The infection never should have progressed so far.

Sassy said...

I think anger is a completely appropriate response. I'm so sorry that you've gone through so much so needlessly. And I'm glad that you're finally feeling better.

Mandy said...

You know, I can't shake the thought we were both told we didn't present typically when maybe they need a new definition of TYPICAL. I've run into a lot of stories now of women who fought a postpartum infection, DIDN'T run a high temp or a high WBC count or if they did it was for a short time. My CRP (C-reactive protein, often considered an indication of infection) was never considered very elevated, but it did go up WHILE I was on antibiotics and nobody seemed to care because it still wasn't VERY high. One would think any increase would warrant concern when you already know there was an issue.

I'm angry FOR you. For me. For the women that are still not being told the warning signs and symptoms while still in the hospital and those who will lose precious time, health, body parts and potentially their lives because they are considered to be not showing TYPICAL signs of infection.

I think we're right to be angry..and soon I'll be emailing you about my ideas for what I think I can start to do about it.

I'm so, so glad you're feeling better and very grateful you let me know how things are going.

Please keep in touch.

Yehudit said...

What a horrendous tale.

It seems like there were two things going on. One is the endometriosis, which hadn't been picked up before. Should it have been? (Sounds like you've had a lot of investigations up to this point).

Then the post-op infection, in addition to not losing blood (which is something I've never come across and now really want to look into as a symptom of possible trouble) I wonder if there was anything else amiss. Did you get antibiotic prophylaxis at the time of the caesarean?

And then there is the issue of your pain not being followed-up. What kind of post-natal care did you have in the first few weeks?