Pre-op decisions: Keeping your cervix, revisited

The decision to keep one's cervix may have just gotten a little simpler for some women...or their daughters, at least. As you may have noted in our previous discussion of this topic, a certain number of women opt to have their cervix removed not because of specific cervical pathology but because they want to be protected from the risk of developing cervical cancer in the future. For these women, news released this week about a new vaccine that offers protection from the most common causes of cervical cancer may allow them to make that decision differently.

I'm not sure yet how and when this is going to play out. The vaccine hasn't been approved yet, but given the large test sample and the overwhelmingly positive results, I'm having a hard time believing the US FDA is going to drag their feet in approving this.

The manufacturer notes that this vaccine "should" be given before a young woman becomes sexually active to "ensure" protection. This doesn't address its use in women who are already sexually active but perhaps are not yet infected and who could conceivably benefit from that protection. As with so many things to do with a hyst, this will need to be a personalized decision: weighing the risks of having been infected against the inpact cervical removal might have on one's sexual response. But as time goes by and more of the women who are faced with the need for a hyst have been protected by this vaccine, that decision to ditch a cervix for prophylactic reasons may become less urgent for many. And, all things considered, that's good news.

Pre-op decisions: we'll just take out those ovaries so you won't have to worry about cancer

If you are planning your hysterectomy, or even just investigating what it would mean for you, and your doctor offers you this "recommendation," you may want to ask him to step back and explain himself in a lot more detail.

It used to be the practice that when women were facing a hyst, a surgeon would suggest that because her ovaries "aren't needed" any more, she should have them removed now so as to remove the risk of later getting ovarian cancer. In many cases, this would include the suggestion that "most" women who retain ovaries only end up needing another surgery later to remove them anyway.

Today we know that this kind of a sales pitch is not only medically inaccurate but is in fact a strategy that holds greater odds of shortening a woman's life than the alternative. And, slowly, doctors who keep up with the news in this field are revising their recommendations to a more accurate representation of the various risks.

Much of this turnaround can be credited to this study, published in the May, 2009 issue of the journal Obstetrics & Gynecology: "Ovarian Conservation at the Time of Hysterectomy and Long-Term Health Outcomes in the Nurses’ Health Study." For something that may be a little less intimidating to read, you might try this article at webmd: "Hysterectomy: Spare Ovaries, Boost Health?." Yet another good resource is the anonymous but probably related to the study website OvaryResearch, which focuses on the study and discussion it's stimulated as well as an earlier version of it that appeared in 2005.

Okay, enough with the citations: what's this about?

The study, which involved a very large pool of women (that's good, because it means the results are more likely to really reflect us all), found that rather than lowering deaths from cancer, prophylactic oophorectomy (that's the fancy way of saying taking out ovaries for the sake of prevention) in fact had a higher risk of death from all causes but mostly heart disease and lung cancer. That's right: removing our healthy ovaries at any age does not lengthen our lives or improve our health.

Further, although breast and ovarian cancer rates were lower in women who had their ovaries removed, the risk of death from all types of cancer was higher in these women. So, yes, the very thing we feared and chose this option in hopes of preventing is actually more likely to happen to us than if we'd left well enough alone.

And the rates of death are highest for women who never supplemented their hormones after the surgery. All those women who valiently toughed out menopausal symptoms because they thought it was the right and "natural" thing to do were in fact working with their doctors to shorten their own lives.

Tragic, right? And we're talking a big tragedy here: about 300,000 women a year choose to have this surgery under the impression that it will help them live longer, healthier lives. According to the main study author, that's "50% of women who have a hysterectomy between ages 40-44...and 78% of women between ages 45-64," even though it's well demonstrated that post-menopausal ovaries continue to contribute to our hormonal support, a support that's lost when we take those ovaries out.

But wait! What about women at real risk for cancer?

Yes, of course there are women for whom the risks boil down to high expectation of death by breast or ovarian cancer vs later death by these risks of lost hormones. That's a special situation and no one is suggesting that preventative removal of ovaries might not be the right choice for them.

But it needs to be an informed choice. That means not just making the assumption that because there's "a lot of cancer" in one's family that we are, personally, at risk for these specific cancers. It requires genetic testing and evaluation by an oncological specialist, not an assurance of a gyn surgeon who heard the word "cancer" and got spooked into a slash-and-burn mentality.

Can't I just take something to make up for that risk?

For many of us, the idea of cancer is so terrifying that it shorts out our brains. Especially if we're younger women and few of our peers have died of things we attribute to aging, we may not feel that the risk of heart attack or stroke is all that vivid or personal.

One of the objections to the recommendations of this study, that more women keep healthy ovaries, is that this risk can be treated medically with statins, drugs that lower cholesterol and lipids that are believed to be a major cause of heart disease, and bisphosphonates, drugs that preserve bone density. As the study author replies, however, these drugs have notorious dropout rates, just as HRTs do. Taking out a healthy body part and replacing it with drugs that must be taken for the rest of our lives and may have significant side effects of their own: if we look at it that way, how much sense does that make?

And then there are the women who want to do it "all naturally." What do they do? Exercise and healthy eating are important lifestyle strategies for minimizing cardiovascular and osteoporosis risks, but alone they probably aren't enough for most women, not to mention that they too are something that sounds better in concept than they are actually adhered to for every remaining day of our lives. Menopausal nutraceuticals, the raw plant estrogenic compounds that are sold to reduce hot flashes in natural menopause, are relatively ineffective in coping with the level of symptoms seen with the larger drop in hormone levels due to ovarian removal. And they entirely fail to address many of the more serious effects of hormone deficiency...such as the ones that lead to the risks cited in the study. In fact, this is not a natural situation and there is no natural solution that makes up for it.

But my ovaries are diseased: what should I do?

No one is suggesting that women should not treat existing ovarian disease with surgery. But this study does suggest that we should balance our treatment options against the risks, and those risks are more sizable than our previous understanding led us to believe.

Some ovarian disorders don't require removing the whole ovary to treat, and these are poorly paid back by the increased risks.

But some disorders do require removal for definitive treatment. Sometimes, other diseases are best treated by removing our ovaries. In these cases, however, we still need to understand the costs of that treatment and we need to understand how to mitigate those costs, whether that's drugs or HRT or simply accepting that we have chosen that direction for our lives rather than the one that would have resulted from our ovarian disease.

We need to know that not having ovaries means more than not having ovarian disease.

You have to make up your own mind

This is a complex issue. Many things that can go wrong with our ovaries still don't require that we give up our ovaries. Nothing going wrong with our ovaries really doesn't seem to require their loss. The things at the other side of that equation, heart and lung disease chief among them, kill many, many more women every year.

Just as we don't necessarily believe the car salesman that the extras he's recommending will do anything more than provide him with higher profits, so we shouldn't necessarily believe the person we'll be paying to do our surgery that the extras he's recommending are more valuable to us than him. This is where second opinions are so important, getting an opinion from a doctor who doesn't profit from that advice. And where we're worried about cancer risks, we should talk with an oncologist to make sure we're evaluating our own risk accurately and not just spooked by the word itself.

This study did nothing to simplify our decision with respect to a hyst except for one thing: we simply shouldn't accept "as long as you're having a hyst" as a good reason to give up our ovaries. Because when you hear that phrase, you now know enough to hear the unspoken rest of it: "as long as you're having a hyst, why not let me give you a higher chance of an early death by heart disease or cancer?" And we simply don't need that.

[Note: This essay was revised in June 2009 to include the results of the May 2009 study.]

Hysterectomy or cancer: are you sure?

I happened across an interesting news item today, a report of a newly released study in the June 2005 issue of Psychosomatic Medicine.

Many women who have their uterus removed for benign conditions may mistakenly believe that, unless they have the surgery, they're likely to develop cancer, a new study suggests.

Researchers found that among more than 1,100 women who underwent hysterectomy for non-cancerous conditions, 29 percent said they had "a lot" of fear that they would develop cancer, without the surgery. The large majority, 80 percent, reported at least "a little" fear.

The report goes on to question whether this misunderstanding is rooted in the explanations doctors are giving their patients for their options. For some of the most common reasons for a hyst, there are other treatment options that may be applicable, but women may not choose them out of (a groundless) fear of cancer.

So for every woman who is contemplating this surgery, it's vitally important that you ask your doctor explicitly why he is recommending this treatment approach and what explicitly are the consequences of not treating it this way. If you hear the word tumor (as is often used in discussing fibroids), are you sure whether you are talking benign (harmless) or malignant (can kill you)? If not, ask your doctor: is my condition cancer? will I get cancer if I don't do this? Your doctor knows what he's talking about, but his assumption that you do too may not be well-founded. It's always better to say something like "just to be sure I understand what we're talking about here, do I have cancer now or will I in the future if I don't have a hyst?" than to undergo medical treatment that may be more extreme than you really want because you didn't get the unspoken message.

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.

Pre-op decisions: Keep my cervix or not?

When considering a hysterectomy, there are several options that may be up to you when the decision is made just which parts of what are to be removed. Women who are having a vaginal hysterectomy don't get this choice: their cervix has to be removed in order to obtain access to the uterus through the vagina. But for women having an abdominal procedure, it is sometimes possible to leave the cervix, the muscular join between the uterus and vagina. If the cervix is not retained, then the top of the vagina is closed with a "cuff" or a special turned-over seam very like the French seaming on the inside of most jeans legs. Let's look at some of the concerns with the cervix decision.

Cervical cancer

There are several considerations related to cancer. If you have or are at high risk for cervical cancer, your surgeon will most likely advise that you have it removed. Removal of your cervix will greatly lower your risk of this particular cancer, although you will continue to need pap smears to monitor vaginal health. Sometimes women question whether they should have it removed just to eliminate the chance of cancer. Cervical cancer has some highly specific risk factors and otherwise fairly low risks for the rest of the population, so you need to do some research on cervical cancer to see if you feel you fall into that population. If you do not, it may not be anything to worry about. [update to this topic]

Mechanical concerns

Because the cervix is an integral part of the muscular support of the upper vagina and uterus, there used to be considerable feeling that removing the cervix made shifting that support more complicated and more prone to failure. This would, in turn, lead to a need for further (future) surgery to tack those organs back up. Most current surgeons use newer operative techniques for supporting these organs, and so this is less of a concern today than it was a decade ago. If you are talking with women about their experiences with this, be sure you know when they're talking about and how skilled/current their surgeon was. Assuming that you have normal tissue health generally, it is unlikely to be a problem for you if your surgeon is up to date and skilled.

Mini-periods

If you keep your cervix, you will probably continue to experience small "mini-periods" or episodes of light spotting. This is because there will be a little retained uterine tissue along the edges that may continue to cycle if you keep your ovaries or if your HRT fluctuates. It's just not possible to separate cervix from uterus with total accuracy—they are each a continuation of the other, in terms of tissue differentiation—and so while your surgeon will do his best, the division may not be 100% accurate. Some women find these mini-periods deeply troubling; others aren't the slightest bit bothered by them. Knowing that this may happen will go a long way towards letting you take them in stride.

Sex

And then there's sex. Some women feel that cervical stimulation is an important part of their sexual response and orgasm. For those women, loss of the cervix may alter the nature of their orgasmic sensations, although not necessarily their ability to experience them. Many women are also concerned that removal of their uterus will remove that sense of muscular contraction that accompanies orgasm. That is not the case: while your uterus is removed, other abdominal muscles still respond in that way and, again, it may be a little different, but it is not necessarily diminished or less satisfying. So for any woman, the question may come down to her own appraisal of how important her cervix is to her sexual satisfaction. For those who find cervical stimulation uncomfortable rather than pleasurable, there's certainly no loss at all in having it removed.

Another concern in removing your cervix is vaginal length. The top of the vagina, you'll recall from a couple paragraphs above, is stitched into a cervix-like gathered knot called a "cuff." This actually consumes very little tissue. A certain number of women when they first get the okay to resume intercourse, however, find that they feel as though they are very very short now. This is a function of healing, not a too-short vagina. It takes a long time—months to a year—for vaginal tissue to regain its proper elasticity around the incisions. Normal vaginal tissue is very elastic, and the area around the incision is going to be stiff and unyielding for some time. This gives you much more of a sensation of an abrupt "end" than you normally experience. This will pass with time, but doctors rarely warn women of this and it causes more needless misery than nearly anything else to do with a hyst. Unless you are having major reconstructive repairs of rectoceles or cystoceles (tears in the vaginal wall that let bladder or rectum protrude in), this is only going to be a temporary healing phase. If vaginal length is for some reason a particular concern for you, discuss this aspect of your surgery with your doctor in your pre-op appointments and plan together how best to deal with it.

Pap smears

And, finally, there's the need for pap smears. If you keep your cervix, you will continue to need regular pap smears on whatever schedule you've always used. But, if you have your cervix removed, you will still need regular pap smears, albeit possibly on a less frequent schedule. As with the mini-period, there's no clear line between cervix and vagina and there is a risk of retaining some cervical cells in with the new vaginal cuff. That means a small risk remains of developing cervical cancer in those cells. There is also, some doctors feel, enough of a chance of developing vaginal cancer that they advocate exams and testing to check for that as well. You might want to ask your doctor about your post-op testing needs in each scenario and how he evaluates your risk level as part of making your decision.

Those are the main concerns with keeping or having your cervix removed. We'll each weight them differently, so it's definitely worth thinking through how each factor affects your individual body rather than just relying on other women's opinions of how they were affected by cervical removal or not. This is one of the areas where the outcomes of our surgery are partially under our control, so it's worth some deep consideration and discussion with your surgeon or regular gynecologist.

And just in case you like visual aids or aren't entirely certain what we're talking about, here's a photo of a cervix, speculum view, and a drawing of a uterus, etc showing the cervix.