Operative uncertainties: why did I come out of the OR with a different diagnosis/surgery from the one I went in with?

I read many comments from women who are surprised to wake up from surgery without their ovaries when they thought they were only having their uterus removed, or who find that they have a whole new shopping list of diagnoses that they never expected when they went in. How can this happen? they ask. They told me that these things "might" happen but were not likely.

Doctors really get in a bind between trying to prepare you for all the eventualities and to steer you so that you're not totally overwhelmed with fear of things that just aren't likely at all. It's a hard call, and it's made vastly more difficult because the diagnostic tools we have just aren't that accurate.

That's right: for all the ultrasounds and MRIs and CAT scans and all those advanced tests, there's just nothing that is anywhere near as accurate as opening us up and looking around. It's a very common thing for women to go into the OR with one diagnosis and come out with either a different one entirely or a whole raft of unexpected discoveries.

For example, endo seems to be a surprise discovery in about half (that's a seat-of-my-pants guesstimate based on what I read online, not a firm statistic) of the women who have a hyst and endo--it's never suspected or diagnosed pre-operatively in a surprising number of cases. Another surprise diagnosis is adenomyosis, which will turn up in a hyst done for fibroids or endo without ever having shown up well in diagnostic imaging. Sometimes extensive scarring or damage from other disorders, as in a case where large fibroids actually damage ovarian circulation, is what makes the deciding difference in the operative plan, and yet scarring is virtually invisible to most diagnostic techniques. Women who have suffered from pains and miseries all their lives and who were told they simply had to put up with it as their lot in being women often are astounded and validated when they return from the OR with a whole shopping list of abdominal pathologies that remained elusive until the surgeon actually got a good, personal, eyeballs look.

The fact is, a preoperative diagnosis, while informed by every skill the doctor can bring to bear, remains only an educated guess. I think this is one reason why, unless the diagnosis is very well-defined indeed, women may be well served by having that abdominal incision. I know that I felt that since I was having the surgery one way or another, I wanted to know that as of that date, there were no more lurking surprises that might have been missed by the more limited vag approach (well, that plus the fact that my uterus was roughly the size of a steamer trunk and I strongly suspect they brought in a fork lift after I was anesthetized to get that monster out). I don't think that this is in itself necessarily a compelling enough reason to choose this route, but it is certainly an added peace of mind that helps offset those first few days when the incision is most troubling.

So I would have to say, after the years I've been involved in the hyst community online, that a pre-op diagnosis is only a "best guess" and that a wise woman and her doctor consider it a very open-ended proposition. And because our ovaries are rather fragile organs, I think that however much we may hope to keep them, they have to be considered at high risk for possible removal.

A prudent woman facing surgery should make her feelings known very clearly to her surgeon on what her stance is on ovarian pathology. I think most of us would okay removal immediately if cancer were suspected. Short of that, however, are a lot of grey-area calls. Do you want suspicious ovaries removed "just in case" or do you want them biopsied with the option of later (minor surgery with laparoscope) removal if indicated? Many doctors feel that after age 45 ovaries represent more liability than value (although that may be changing), on the premise that our bodies need hormones for nothing other than fertility. Many women in menopause disagree with this, and it's something that it's best to think out in advance (a brief hormone education that might help you explore this further is here) lest your doctor make a decision for you that you would not have favored had you been a party to it.

At the very least, you can ask your surgeon: under what conditions during the surgery will you remove my ovaries--what are the decision points for you? And if you disagree or think the matter requires evaluation at the time of surgery, you can modify your operative permit to include the specification that if ovarian removal is indicated based upon surgical findings, you only will grant consent for it through [your personal rep named in the permit, whom you have prepped with your views in great detail and whom you trust to carry out your wishes as best they can]. In such a case, the surgeon would have to contact that person (who would obviously be standing by in the waiting room through the surgery), explain the situation, and receive their consent for whatever option is proposed. This is not an unheard-of option, and one that women who have strong feelings about their ovaries have successfully taken.

So while there are unknowns we all face when we go into surgery, good planning and frank "what if" discussions with our doctors can help make sure we're better prepared for those uncertainties. When your doctor runs through that list of "possible but not likely" outcomes, stop him and ask: but what if that does happen? What then? What are my choices? What will those choices mean for my future health? And if you feel you need to, you can add language to your operative permit to specify that in a "what if" situation, the doctor will perform the option you prefer.

We can't eliminate the unknowns--they're part of the package--but we can prepare for them as well as possible so that the fear of them beforehand and the way we deal with them afterwards are at least less stressful for us. And we certainly can use a little stress reduction as we're facing this surgery.

Pre-op decision: surgical route

The vaginal vs abdominal route is endlessly debated. Going for the bottom line right away, the "right" answer is clearly: the one that gives your surgeon the absolute best field of vision/access for what you need done.

That said, it's widely believed that the vag route, because it skips that belly incision, has an easier recovery. In the very first few days, that may be the case, but it's been my observation that over the entire recovery period, there's not a whole lot of difference.

The key point to remember is that it is the internal healing that is the big job, and that is the same whichever surgical approach is used. In fact, I've noted time and again that it's the women who have a vag hyst who are more prone to overdoing in the early stages, just because they aren't looking at that incision and treating themselves as cautiously. Some difference does exist between a bikini and a vertical incision, since the latter extends further up into the belly and is more noticeable with muscular effort. But even so, the length of time incisional healing affects you is really brief compared to the interior healing. So try not to agonize over this one.

There have traditionally been three factors, roughly, that determine suitability for the vaginal procedure:

1. Is there room to get the uterus out through that route? Obviously, with very large fibroids and for many women who have never given birth, that answer would be "no."
2. How experienced is the doctor with that version of the procedure? A vaginal procedure is in fact much more complex. Experience counts in avoiding negative surgical outcomes and quality of final results.
3. Can the doctor see everything he needs to? The vaginal route obviously involves a more limited field of view. Those needing ovarian evaluation or considered cancer possibilities often require the better visibility of abdominal incisions.

I was told that since the doctor couldn't "see" everything that he was doing, in many cases, there was damage done to the other organs.

Exactly. The addition of a laparoscope helped this somewhat, as that technique became more common, but this is still a much more remote viewing that calls for considerably more expertise on the part of the doctor and relies much more on the soundness of the pre-op diagnosis (as opposed to visually checking everything out).

I have fibroids in and around the outside of my uterus. I don't want anything missed. Also I read that they are finding that a lot of nerve damage is being done to and around the vagina and sex is often affected greatly.

So many things are relative to your own particular anatomy, what exactly the pathology is for which you are having the procedure, and your own surgeon's practice level. But in general, yes, because of the awkward approach angle, there tends to be more manipulation of internal organs and nerves and such than with the abdominal approach. And because things are harder to see, there is a greater chance of missing things or causing damage with a vaginal approach. Additionally, women who have spent hours in the stirrups for surgery are more likely to experience back pain or back/leg nerve irritation in their immediate postop period.

In fact, the vaginal procedure, as a rule, takes longer (longer time under anesthesia) and requires more internal work (sutures, healing) than the abdominal. The more rapid initial bounce-back due to not having the abdominal incision is not always a service, since the internal healing that goes on is greater, even if less obvious. More women with vag than abdominal hysts end up going back for revisions when they have damaged this or that during the healing process by doing too much before they are ready and/or getting an incomplete heal. The famous 6-8 week recovery period is for the internal healing, not the superficial incisional healing—something that it is all too easy to overlook with the vaginal procedure.

I understand that in vaginal surgery, the cervix is taken out . I want to keep everything that I possibly can.

Yes, it must be, because of the way the surgery is done. Many abdominal hysts also remove the cervix, and by and large the problems that used to be associated with this, of later losing support for internal organs, are eased by more current techniques that emphasize reattaching the tendons to provide good abdominal floor support. The argument now focuses solely on whether or not you have a strong cervical stimulation component in your orgasms. Those who do will probably miss it; those who don't will probably get along just fine without it. Remember, of course, that with cervical retention you will continue to get a light period (and may need hrt to cycle you, if you have your ovaries removed); you will also continue to need regular pap testing for cervical cancer.

My own decision was for an abdominal, even though I was offered a vag (reluctantly). Because my pre-op diagnosis was unclear about the actual state of my ovaries, I wanted the doctor to be able to examine things thoroughly. He was relieved, since the vag route was only conditional, with an abdominal to follow if he found anything suspicious that needed further exploration. I did, however, bargain with him that he would start with a horizontal incision (the "bikini cut"), which I feel disrupts abdominal muscle fibers less and promotes faster recovery of abdominal tone. We agreed that he would start there and only extend to a vertical (making a "T" incision) if what he saw warranted further removal of affected organs. This was written into the operative permit, specifically.

As it turned out, I did not need the vertical extension as my ovaries were only rather suspicious and not yet fully malignant, and he was able to do a thorough examination of the entire abdominal cavity from the horizontal incision once he got that mammoth uterus out of the way. For me, the peace of mind in knowing that such a thorough exam had been done more than made up for the additional inconvenience of the incision.

And, truly, I didn't have a lot of recovery difficulty. I was walking within a couple hours of returning to my room, and within two weeks was walking a mile or more without problems. I switched to oral anti-inflammatories within 24 hours of surgery, never using either the IV morphine or other narcotics (I did get regular doses of IV Toradol, a potent anti-inflammatory, in the first 24 hours). Among other things, I credit this with not having had problems with gas or a first bowel movement (although I did hit heavy fluids, fiber, and a couple stool softeners to ease things along, in addition to the activity).

So for me, the decision was to do nothing to compromise either my surgeon's best possible technique or best possible examination, and in return for that I found the abdominal incision to be no dire cost. Everyone will have different experiences, but those are the things I found worthwhile to weigh in making the decision.