For the guys and the women who live with them: hysterectomies, sexuality and old wives' tales

A hysterectomy is a daunting prospect for many men, and there are several concerns that men whose partners are facing a hyst typically have.

For some men, it's the helplessness in the face of a partner having such a severe health problem that she requires major surgery.  In American and much of other Western society, men are taught to be problem solvers, such that problems they cannot provide a solution to, situations where their encouragement and support are all they can bring to us, are very highly frustrating, and that frustration may be expressed as either unfocused anger or withdrawal of contact.

As women, we need to be aware that this response is normal and does not necessarily mean rejection of us as a partner. It means that where we can redirect the men in our lives as to how, specifically, they can help us with preparation and recovery, we may find they are more gracefully able to deal with their worries than if we silently wait for them to make a gesture of that help. And for men, it means that they need to reach for comfort with the idea that this isn't a problem they can solve, but a situation in which their support can ease that problem and truly provide what their women are needing.

 For other men, there is a concern over what a marriage may most mean to them: a ready, continuous supply of sex. Whether the relationship is a partnership or a religious one founded on the man owning the rights to the woman's body, many men are ill-equipped to deal with the notion that their spouses will be unavailable sexually to them for a period that the spouse, not they, will determine. For those whose religion only permits of procreative sex, there's that whole issue of what becomes of it when procreation is surgically eliminated. And when they tap into that delightful pool of Old Wives Tales that surround hysts and menopause, they can easily convince themselves that a hyst means the end of their (marital) sex life.

So there are some valid concerns here. Let's look at what is really involved.

Pre-op: The hospital pre-op appointment

Often referred to as "the pre-op," this is different from pre-op appointments with your surgeon. At that appointment (or several appointments) you explore the reasons for your hyst, make plans for many optional parts of your surgey and followup care, and sign (after discussing) your surgical consent.

But for "the pre-op" you'll most typically be going to the hospital and/or the office of the anesthesia group that will be providing that portion of your surgical services. Here's what you can expect at each.

At the hospital

You can expect to be spending some time with the billing office, getting your registration and billing information recorded and signing the multitude of forms the hospital requires before accepting you as a customer. You should bring in or be prepared to provide such information as your insurance billing details, next of kin/emergency consent contact, who will be the contact during the time you are in surgery, living will (if you have one), and any special needs you may have (a translator? assistive devices for basic communications? religious practice needs? visitor restrictions for personal safety or preference?). If you are not covered by insurance, be sure to be prepared to set up a payment schedule and ask for a discount for paying cash; bring your credit card as well.

You may be given paperwork to bring back with you upon admission. Be sure to check what the procedures required on the day of your admittance are: when your surgeon told you to be there at 8 am, he meant to begin the stuff he is concerned with; the hospital office may also need your time then, and you don't want to be late for your surgeon because of competing demands for your time. This is also a good time to ask whether you will need to stop at the billing office on your way out of the hospital when you are discharged: at some hospitals this is routine (and tiresome) and other hospitals take care of all of this at your pre-op visit, freeing you to just cruise out whenever your doctor gives the okay. Be sure to ask when checkout is during the day, lest you end up paying for an extra day's stay because you lingered an unnecessary half hour over the limit. If you plan to ask for a copy of your hospital records, this is also a good time to ask the procedure for obtaining them (although you may be referred to another department for this).

If you have not already had these done at your doctor's office, you may also be asked to visit the lab, x-ray and ekg to have routine pre-op studies done. Not all of these are required for all women, but generally some or all of them are simply part of a last-minute check to make sure that other problems will not interfere with your surgical procedure. Aside from the stick for blood, none of them are invasive or especially uncomfortable.

If you are being typed and cross-matched for blood that will be held for a possible transfusion, you may be given an ID bracelet and required to put it on. This is dorky-looking but necessary--it holds your half of the only key that assures that the held blood has been tested for compatibility with your own. If you lose your key, the blood is wasted (and you'll be charged for it) as well as not available should you need it; re-matching you will take time that you may be ill-able to afford in an emergency. If wearing a paper bracelet for several days is especially distasteful for you for some reason, you may be able to negotiate having it placed around your ankle instead. If that is the case, be sure to let everyone know where it is on the day you're admitted (where everyone means your doctor, the circulating nurse in the operating room, and anesthesia) and ask that it be noted on the front of the chart when you are being checked in.

Anesthesia

The other part of "the pre-op" is generally a visit to someone from the anesthesia group. This is a special medical practice, separate from your surgeon. Typically this service is provided by a pool of doctors (anesthesiologists) and perhaps nurses (anesthetists), and you will be billed separately by this group for their services. The practitioner you see may not be the one who will care for you during your surgery, but he will write notes and perhaps some orders that will go in your chart for the person actually in the OR.

This appointment is primarily an interview, although it is likely that the practitioner will examine your head and neck, and look into your mouth (or at your back, if you are having a spinal--and some of the following will not be applicable if that is the case). This is to identify any problems that may make putting the tube into your lungs (through which they will maintain your respirations once you are under general anesthesia) tricky. In particular, you will be asked if you have any dental appliances or chipped teeth--it's important to let them know this so that they can avoid damaging them with the instruments being used.

Other things anesthesia will discuss include previous experiences you've had with anesthesia and other health conditions you may have that might affect your toleration of anesthesia drugs. This is also the time to share any fears you may have about anesthesia, review any meds you may be given to relax you beforehand, and to discuss nausea in the immediate postop recovery period. If you are prone to nausea, let them know: it's possible to medicate you before you start puking, which can be A Very Good Thing when having abdominal surgery. If you have had bad experiences in the past with pain medications, like itchy/rash reactions, do be sure to let them know this, even if it's not a real allergy.

Anesthesia will review with you the timing of when you may last eat/drink anything (not what you may eat or drink--this may be up to your surgeon). Fasting is very very important to prevent vomiting during the process of going under--something that can cause pneumonia--so be sure you understand your restrictions and that they are for your benefit. If you plan to take some regular meds or supplements in the fasting hours before surgery, please check these with anesthesia and ask what/how much you may take them with if they are oral meds. Diabetics or asthmatics have a special need to review what they will be taking before surgery, what their normal maintenance regimens are, and how their needs will be managed during surgery and recovery. The whole goal of this appointment is to make anesthesia as successful and little stressful for you as possible, so the more you can help your anesthetist, the better things will go for you.

And one last note about all of the pre-op contacts you may have just before or the day of surgery: don't be surprised if, over and over, you are asked specifically what procedure you are having (and if something is happening only to one side, like only one ovary to be removed, you'll be asked to point to the involved side). This is a constant process of checking who you are and that the right person is having the right surgery--it's a much more positive identifier than asking a nervous or groggy person a question like "are you [mumbled name]?" that they might answer without really grasping. And, because it's a hyst, you may be asked several times whether you are pregnant and if you understand that having this surgery means you cannot ever again get pregnant. While this may seem like an extra added torment to many of us, it does, ultimately, protect the rights of women to understand what they are choosing. If our aggravation pays for one woman getting the message who may not previously have fully understood the implications of what she has consented to, well, don't you think it's worth it for her sake?

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: planning for the medications we'll be receiving

In the course of some discussions we've been having on the list, I've realized how difficult--and yet how important--it can be to make sure that our medication preferences, sensitivities, and allergies are taken into account in the planning process. While most of us know about pre-existing allergies and know that we need to tell our doctors, anesthesiolgists and caregivers about them, it's more of a grey area in the case of sensitivities or strong preferences. How can we anticipate what we might be given in order to tell our doctors what we need them to know when we have, for the most part, little idea of what we'll be getting? I thought that you might like to know the general outlines of what you can expect in terms of medications throughout your surgical experience. Mind you, these are just generalities, so you'll need to do the work of talking with your doctor and fleshing out the details.

Starting with the at-home pre-op phase, many women are told to use a specific laxative bowel prep, with various doctors preferring different combinations of agents. Some doctors do not order this, and it should not be done unless it's ordered. You may be able to negotiate the actual laxatives used if you have specific preferences.

In the in-hospital pre-op process, you will probably receive a sedative/amnesiac agent (Versed is one commonly used, but there are many others and it's a matter of physician/anesthesiologist preference) and this may be mixed with other drugs, such as atropine, that dry up your nasal/oral secretions and assist with anesthesia (generally those receiving a general get this). Once your IV is started, you may also be given an initial dose of an antibiotic.

One other thing that might pose a problem for some women in the pre-op surgical routine is exposure to a skin cleanser called Betadine. This is an iodine-based scrub that is typically used to prep before incisions. Not only is it used to scrub your belly if you're having an abdominal incision, but you may be asked to douche with it beforehand, in order to begin decreasing the number of bacteria in your vagina. This can be a harsh agent and there are a certain number of women who are simply allergic to it. If you've not encountered it before or not used it on delicate vaginal tissues, ask for a sample betadine scrub so you can do a test before using the douche. I know that I can have betadine on regular skin without any problem at all, but when I tried a little test scrub on my labia, the burning was horrific even though I washed it off immediately! I reported this to the prep nurse the next day when she tried to send me off to do the douche, and she agreed that the doctor would not want to do surgery if the prep left me blistered and burning. There are other cleansers they can use, so if you're in any doubt, ask your doc at your preop and ask for a sample to test out yourself at home before committing to placing it where it is not, ahem, easily removed.

In the OR you will receive a great many drugs, depending upon the anesthesia you choose. These are under the control, for the most part, of your anesthesiologist, and that is who you need to discuss this part with if you have any specific drug concerns. As a rule, general anesthesia today is much less stressful on the body than it was even a decade ago, so your mother-in-law's account of her reaction to surgery she had 40 years ago may not be entirely predictive of your experience. Spinal or epidural anesthesia also involves drugs given systemically as well as locally, so you will again have to review with your anesthesiologist exactly what his plan is.

In Recovery, you may receive an antinausea drug (it's possible to request preoperatively that you be medicated for nausea before you experience it, if you're worried about the possibility or previous experience leads you to believe you're prone to vomiting). You will receive pain medication IV (typically morphine or demerol) and perhaps, depending upon elapsed time, another dose of antibiotic. If your doctor is one who favors this approach, you may also be given IV Toradol, which is an anti-inflammatory of the aspirin-ibuprofen (NSAID) family. Given the recent questions raised about the Cox-2 family of drugs and heart disorders, if you have any cardiac disease, you should discuss the use of this entire family (Cox-2 and NSAID) with your cardiologist as well as your surgeon, both in terms of operative use and home use of oral anti-inflammatories.

Postop pain control tends to be IV at first, then gradually moving to IM (shots, usually in the big muscle of the butt) or perhaps straight to oral. Morphine and demerol remain the most common but there are other agents that may be used. Some doctors continue the additional Toradol so long as you have an IV. Women who retain a spinal may be also getting morphine via that mode. When the transition to orals is made, they typically are one of the codeine blends although some women go straight to oral anti-inflammatories.

Many doctors will also place you on anticoagulant shots starting in the OR and continuing for at least a day until you are up and around enough that the risk of clotting is lowered. These are tiny sticks into the fat pad of your belly, and may be the source of small bruises you'll see there. Because these shots are given early in our recovery when we're pretty bleary, many of us don't remember them at all and wonder about the tiny bruises. The drug is called heparin.

In the postop (in-hospital) period there may be several more doses of antibiotic and usually the introduction of stool softeners once you can take oral meds (once your bowels have begun making sounds signifying they are functioning). Additional vitamins or iron supplements may be ordered for those whose blood counts are low (but do not resume taking your own vitamins till you get the okay from your doc--if you double up on some of them because you're taking yours and getting some from the hospital, you can set yourself up for bleeding and other risks). If you are having problems with gas the best remedy is walking but some doctors will also order Gas-X or similar drugs to help ease the discomfort.

And those are all the usual things I can think of that might be a problem. Obviously if you take drugs for other problems, you'll be resuming those postoperatively and should be sure that you do get them if they are needed and that you get the doses you normally take unless you and your doctor have discussed making some temporary change. You may need to remind your doctor about pre-existing prescriptions, especially if they are prescribed by other doctors, so they don't forget to resume them in your postop orders. Don't assume that they are being omitted for some good reason unless you have specifically discussed doing so with your doctors--docs forget things that are outside their own routines for their surgeries, and it's up to us, ultimately, to guard our own interests.

It's a good idea for each of us to think through whether any of these drug families are a problem for us--if so, early discussion with our doctor and/or anesthesiologist will help alleviate the risk of negative reactions when you are least likely to want them: during or immediately after surgery. What if you've never had any of them? Our caregivers are alert for negative reactions, but we have a certain burden on us to report them as well. For example, if you are sensitive/allergic to morphine, you may experience annoying itching of your nose and eventually itching all over. So it's a good idea, if you start itching and have a morphine pump, to speak up early and often in asking to change to something else.

I know that I got one push of my morphine pump done by the nurse as I was getting into bed when I got to my room from Recovery, and I spent over 24 hours trying to rub my nose off my face. Luckily I didn't need the morphine again--Toradol was plenty of control for me even with a fairly sizable abdominal incision--and so it was not something I had to deal with. But this is someplace where having a friend or family member in the hospital can help us: in those first postop hours when we're too snowed to put things like this together or to advocate strongly for our needs, someone with us who can help us deal with these things can be very valuable.

My sister was the one who made the nose/morphine connection for me (I hadn't noticed I was doing it--yeah, that's how groggy), and so when I got up and the nurse went to hit the pump, she intervened and asked me if I felt I needed the morphine in the light of the reaction I might be having. I agreed that no, I felt as though I could try it without, and so I went staggering merrily off down the hall with the two of them following along shepherding my assorted catheter/IV/whatever (in retrospect I think that maybe the morphine made me more than a touch goofy, too, but at least I was up and moving). And by the next morning I was more alert and thoughtful and could take care of myself again, even though my concentration was as impaired as anyone's whose just had a general. So that is a little cautionary tale for those who are wondering what this actually works out to be like, if we have a mild sensitivity reaction.

To help you do some drug-related research, if you are unclear on exactly what drugs are related, what they include and what side effects they carry, these links might be useful:

• Rx list
• Herbal safety

The main takeaway point here is that it's up to us to judge how we're responding to what we're getting, not only in terms of whether we are getting, say, adequate pain relief from our meds, but whether they are suiting us in other ways as well. Remember that there are alternatives for all drugs, so gritting your teeth and putting up with something is really not necessary for anything other than the convenience of your caregivers. And that's not who it's about, is it?

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.

Will I be in menopause?

Women making plans for a hysterectomy often ask whether having a hyst will mean that they will go through menopause and what that will mean for them if they do. I can tell you right away that if you have your ovaries removed, you will, irrespective of your age, be in menopause when you wake up from anesthesia. If you retain your ovaries, you stand a good chance of postponing menopause for some undefined time, but as we've previously looked at here, there's no guarantee just how long that time will be.

This might be a good place to define just what menopause really is. Menopause is nothing more than your levels of ovarian hormones dropping below that level that supports fertility. When menopause happens naturally (that is, without surgical intervention), our ovaries don't just throw a switch and never produce another hormone again. Instead, a long slow decline begins a decade or more before actual menopause and continues for many years, if not decades after that. Menopause is simply one point on that long slope of hormone output, even if it happens to be one we can clearly see because we stop having periods. Because a woman in natural menopause continues to produce lower levels of hormones that continue to support her remaining, non-fertile hormone needs, she may not have very many or very disruptive symptoms.

But in surgical menopause, when our ovaries are removed, we go from ovarian function (either fertile or naturally menopaused, depending where we are preoperatively) to no ovarian output at all. That doesn't mean we have no hormones at all, however. In menopause, our belly fat contains special cells that can produce a weak estrogen called estrone. Our adrenal glands can also make estrogen from other hormone precursors, although the amount we can produce that way is somewhat dependent upon what other competing tasks the adrenal glands are facing at any particular moment. Whether or not that is enough remaining capacity to meet our non-fertile hormone needs or not, it is definitely enough of a drop that we should be considered menopausal.

Does menopause mean I'm just going to become old and wrinkled and sexless overnight?

No. That depends upon your genetic makeup (how women in your family age at menopause might be a helpful clue for what you can expect) and how well your hormone needs are met in menopause. No matter how you get there, menopause is a major life change—the biggest one we experience after puberty. This signals a number of things to your body and will affect a variety of metabolic systems. You most likely will lose collagen and find that your skin gradually becomes dryer, more delicate and more prone to showing wrinkles, although how rapidly this develops may be somewhat mitigated by genetics and meeting hormone needs. It's typical that our body shape changes as we take over estrogen production with belly fat: we may thicken in the middle and find that metabolic down-setting causes us to gain weight that it is difficult to lose without dietary modification and exercise. And there are other changes that may slowly develop. While we're not plunged into elderly bodies overnight, the fertile part of our lives is over and this will signal changes.

Do I really have to take HRT for menopause? If it only lasts a few months, can't I just put up with the hot flashes and wait it out? I really hate to take drugs if I don't have to.

First of all, let's dispose of that "only a few months" myth. Somehow, doctors have convinced themselves that it only takes a few months to adjust to menopausal hormone levels and thus recommendations for the use of hrts are for just long enough to make this transition. But this is a gross oversimplification for many women, and especially so for those without ovaries. In fact, there are two aspects of menopause that determine how it affects us and how long those effects last.

In terms of overall experience of menopause, the suddenness of the transition definitely affects the number and severity of symptoms we experience. Our bodies don't really approve of hormonal fluctuations, and the sharper the fluctuation, the more dramatically our bodies will express their disapproval with symptoms. An especially rapid change prevents us from making the many small, slow accommodations to life with low estrogen levels and estrogen provided by non-ovarian means. Generally speaking, a surgical menopause is a much greater challenge to the stability our bodies want and will cause more symptoms from the transition.

The other aspect of symptoms has to do with how well our remaining hormone needs are being met. Remaining needs? Yes, our ovarian hormones do many things besides prepare our uterus to receive a fertilized egg. In fact, they are used throughout our bodies in nearly every system. I can't go into all of these details here, but you can read much more about hormones and what they do at the Survivor's Guide to Surgical Menopause. I would encourage any woman facing surgical menopause to read through this material, as this is an important topic for our ongoing health and one we typically know very little about.

The thing about hormone needs is that while they may decrease with age, they do not disappear altogether. So if you are failing to meet your hormone needs, then you can expect symptoms to persist. You don't "get over" the need for basic bodily processes, and if you never provide the support your body needs to carry them out, you'll continue to experience the symptoms of those systems malfunctioning.

But it's also very important not to confuse HRT with drugs. It's easy to do, since they both require a doctor's prescription to obtain and they both are manufactured by pharmaceutical companies. But a drug does something to interfere with a normal body process, with the intent thereby of "fixing" something that is being a problem for us. In the case of hormones, however, we're not interfering with a normal process; we're providing the raw materials to support normal function in the face of a surgically-induced shortage. Taking supplemental ovarian hormones is more akin to someone who is hypothyroid taking thyroid hormone supplements or someone who is diabetic taking insulin (another hormone). HRTs are just different forms of either our exact hormones or a near-match chemical that has similar actions in the body.

Whether or not you need to take hormones (and I include in this category prescription, non-prescription and food sources: if it can act to meet hormone needs in the body, it is an HRT) is pretty much up to you and what you define as the level of health and comfort you wish to experience during menopause. If taking hormones is more distasteful to you than hot flashes and other symptoms, there's really no reason you have to take them. There can be some pretty serious risks to health on either side of the take-or-not HRT question, so you should research hormone actions, consider them in the light of your own personal health risk profile, and decide for yourself how you want to deal with hormone needs. There are drugs that can alleviate some of the symptoms of hormone deficit and there are other health practices that can help limit some of the risks. It's all up to you how you choose to deal with these needs.

And of course we've all heard of the happy, healthy elder who never took hormones and was just fine. I'm really delighted for her, but I have to point out that this cannot be achieved by force of will. We have little control over how well our body is genetically programmed to cope with supplying hormone needs. If yours isn't up to the task, you're not a failure and I would hope you don't punish yourself with guilt. Hormone needs, I repeat, represent basic physical processes, not optional comfort measures. We are not wimps when we choose health and wellbeing in our menopausal years.

I've heard that I should get my hormone levels checked before surgery, so that I can just take enough HRT afterwards to get back to where I know I was feeling good.

Sure, you can spend a few hundred dollars to be tested. But unfortunately, premenopausal hormone levels fluctuate constantly, perimenopausal hormone levels fluctuate wildly, and even postmenopausal hormone levels are only a momentary snapshot. There's no way to know to what extent any hormone level test corresponds to how you feel because of that moment-to-moment variability. Furthermore, if you were fertile, your needs once you are no longer supporting fertility will not be the same. With no uterine cycling to support, that level of hormones will be a gross excess postop.

The other flaw with that premise is that you can look at a test and know how much to put back into the system in HRT. Alas, but it's not that simple. There are so many intersecting influences here that there is just no feasible correlation between levels and supplementation needs. I'm not going into the details here since the Survivor's Guide does it much more thoroughly. What I want to leave you with is the simple statement that it just doesn't work that way. If you want more about the why of it, you'll need to follow the discussions over there.

If it's being menopausal that makes me look old and ugly, can't I just take as many hormones as I used to have so that I stay young looking?

Nope, not a good idea. One of the things we learn in menopause with HRT is that while enough is wonderful, more than enough is hellish. Hormonal excess raises our risks of negative effects and causes some quite unpleasant, if not dangerous, symptoms. And regardless of the risks, HRT just can't turn back time. Your body recognizes ovarian loss or natural menopause as a life transition and behaves accordingly. While HRTs have come a long way since they were first introduced, they remain a relatively crude tool. You can't entirely fool your body with them and they won't reset the clock. Menopause awaits all women; the only part we get to pick is how we respond to the needs it creates.

Bladder Suspension

Did your doctor say you might be a candidate for this procedure? Here's what he's talking about:

• Brief overview of the procedure, with drawings. Not to much from a patient viewpoint but a place to start.
• Good summary of the different procedures and recovery process
• A nursing care review that spells out what kind of information your health care providers should be offering you
• An interesting followup article (read well down the page)
• Finally, here's a search results link if you really want to read up a storm

Is a hysterectomy like a C-section?

Although many women come to a hysterectomy as novices to surgery entirely, a certain number have previously had a child delivered by Caesarian section. Because this is an abdominal surgery affecting the uterus, it's natural to try to compare the two experiences as part of envisioning what hyst recovery will entail. However obvious this comparison may seem, the fact is that they really aren't equivalent surgeries.

First, there is the experience of the C-section itself. There are so many variations in pain tolerance, not to mention both birth and hyst experiences that I don't quite know how to find a common ground. There are women who are inconvenienced by both; women who can say yes, it wasn't a picnic but I survived it okay; and women who think it was the most exquisite agony they ever experienced or could conceive of experiencing.

What I can tell you is that from reading many years of women's reactions, the majority admit discomfort, a great many admit pain of some degree that was of limited duration and dealt with adequately by analgesic drugs, and a very limited few (and most often those are ones with especially complex suegeries, poor care, or who develop complications) report truly unbearable or excruciating pain. Depending upon how you experienced childbirth, you may have gained a clue about your own tolerance for pain.

The other aspect, and it's a very important one in developing your expectations of how your hyst will go, is that because you're talking major surgery (that is: cutting, removing, rerouting stuff internally), you are talking a much more prolonged recovery than childbirth, where it is more a matter of simply returning to a previous state (even in a Caesarian, there is little disruption of abdominal contents other than to heal some very basic incisions). It's a common myth that a hyst is "just like a Caesarian" and this really can lead to shock and disappointment later (or, among friends, co-workers, and the whole other rest of the world who may feel free to comment on your condition).

But in the course of a hysterectomy, your bladder is peeled loose from your uterus, many things are cut (nerves, ligaments, blood vessels), your ovaries and their supporting structures may or may not be removed, your vagina will be given an artificial ending, and all of the support that used to derive from your uterus and its attachments has to be relocated to hold up the end of the vagina, the bladder, and your guts. On top of this, your other organs are handled, pushed out of the way, rinsed off, and then reassembled. There are sutures and sutures and staples and multiple closures to hold all these things back together again. The tissue damage is higher, you are under anesthesia longer and with more drugs, and your risks of infection are higher. And that's assuming you aren't also having endo removed, scarring cut apart, bladder suspension, or rectocele/cystocele repairs done. So this surgery is much more complex than just making a slit, removing the uterine contents, and sewing the slit closed again. And it takes a correspondingly longer time to heal and heal well.

I'm not trying to intimidate you here, but rather to make sure that you're clear on what to expect. It's not by any means an impossible or even wildly difficult experience, but it is important to be realistic in all your expectations...so it's very good that you are thinking and looking for a conceptual framework to base your expectations on.

But "much worse" is not exactly how I would term it. It will take longer to get a good recovery, so if you measure success in time elapsed, you will indeed find this one more demanding. Pain? There is no excuse for either one to hurt more than the other, for pain relief is pain relief, irrespective of cause. Don't settle for less than you need, but also remember that it is not the role of pain medication to make you oblivious. A reasonable objective is that you will be in minimal discomfort while lying still and tolerable discomfort when moving around and right significant discomfort if you do something inadvisable for your level of healing. It is also reasonable to expect that you will be aware of and guarding your surgical site from discomfort for the longer healing period.

But many many women report that their hyst post-op discomfort was really not much worse than significant period cramps and in many cases was considerably easier than the chronic gynecological pain some women experience. Your goal as you heal is to be guided by your discomfort, such that if you begin to experience it, you need to slack off and not stress your healing.

Maybe this will help you get a better handle on the situation ahead of you than just the scary "worse" label. It's doable, it's work, it's not pleasant but it's not gruesome. There is always someone who has complications, who has a bumbling doctor or inept staff, who has a different personal or cultural definition of pain tolerance, and those with problems always have more to say about something than those who found an event manageable. If you can try to hang onto this sort of perspective, I think you'll find that you too will be able to handle this surgery pretty satisfyingly.

Postop: Pain

Because many of us come to a hysterectomy as surgery novices, one of the things that worries us most is the prospect of pain. Chat around at the water cooler or the hairdresser's and you'll hear plenty of scary stuff. But is that realistic? No, not really. Let's look at what we're facing.

You're entitled to a plan

No matter what previous experiences you may have had with surgeries and pain, a minimum expectation of the pre-op planning process is that you and your doctors develop a pain management plan. You should know how they anticipate dealing with the expected pain, what they plan to do if that is not adequate, and what alternatives they are holding in reserve. You should also know when you may have medication and how to get it, including what to take home with you and what to do if you run out. This is very very basic (however much doctors take it for granted and don't discuss it), and you have every right to ask for a discussion of it and to participate in making those decisions.

Immediate postop pain management

One thing that can be beneficial in dealing with pain in the first hours after surgery is the use, from the Recovery Room on, of a relatively new anti-inflammatory called Toradol. It is given IV, regularly, and it seems to keep the level of pain down such that narcotics may not be required or may be required only in lesser amounts than when they are used alone. It also seems to ease the transition to oral meds, particularly of the long-acting NSAID family (such as the 12-hour dose of naproxen), and does not carry the effects of the opiates (in either allergy or constipation).

[Update 12/20/04: FDA warning about naproxen: The FDA has issued warnings about possible heart damage that may be caused by using naproxen. More on this topic in this post.]

It is also reasonable to ask your anesthetist to medicate you for nausea before you wake up in Recovery, rather than waiting for you to request such medication because you are already nauseated. If you make this request at your pre-op appointment, they should be willing to honor it. And, generally speaking, if you can get past the immediate post-op period, nausea should no longer happen to you. In fact, nausea after the first few hours typically means you're being nauseated by something you're receiving after surgery, such as your pain med, not things you received during surgery.

Two fairly common pain management setups are the patient-administered IV and the epidural block. The former is a pump, connected to your IV, that contains morphine or demerol—very potent narcotics. The pump is set for a maximum dose per hour, but you may trigger it to deliver a dose whenever you need it, up to that maximum. This allows you to pre-medicate before doing something that you feel might cause pain (like getting up) and allows you to control the amount of medication you get. This pump is typically used for one to two days, and is gradually replaced by oral medication.

The epidural involves a pump supplying numbing medication into your spinal area, to block sensation from the lower part of your body. It is generally used in conjunction with spinal anesthesia. Women who use it tend to speak very highly of it, especially in terms of promotion of early mobility. It is only left in place for a day or two.

Another, lesser-used but still valuable technique is injecting the area of your incision with numbing medications or running a small continuous drip of medication to that area. This may or may not need to be your total pain coverage.

How bad will it be?

The goal of pain management is not oblivion. Even the best drugs cannot obliterate your awareness that you've had major surgery and your body wants you to be really really careful with it. There are also some tradeoffs with narcotic pain medications that need to be kept in mind: too much will cause you to stop breathing, and excessive use can cause respiratory suppression and pneumonia predisposition as well as increasing postop constipation.

The goal of pain management, then, is making the discomfort tolerable. Note that I don't say "pain." Rather, you are aiming for a level of not-too-bad when lying still and tolerable while moving and "ouch!" with injudicious movement. You have a right to this amount of coverage, but you may need (or you may need someone with you who will do this) to advocate for your needs with busy nursing staff. If your nurses are not responsive to your needs or you feel you are undergoing excessive delays in obtaining medication, you should contact your doctor to let him know this. Even during the night, there will be an answering service that can have the doctor on call for your surgeon's practice get back to you. You should not be left in pain due to lack of medication and the medication your doctor orders for you should provide adequate relief. If you have received your limit of pain medication without obtaining acceptable relief, your doctor should be able to switch to a different drug. We all have different physical responses to different drugs, and so some drugs work for some of us better than for others. The goal should be adequate pain relief.

What about the risk of addiction?

The addictive potential of postop narcotics is very low because you are taking them for pain relief, not for the sensation of taking the narcotics themselves. Taken in the amount necessary to control pain, the pain "uses up" much of the action of the narcotic and it does not provide the sensations that cause addicts to seek it out. The duration of postop use is not at all close to the amount of time required to create any physical addiction. Neither you nor your doctor should stint on your legitimate use of narcotic medications for pain relief.

That does not, however, mean that you should not take them for the shortest necessary time. Narcotics carry negative effects as part of their normal mechanism of actions. For example, they are quite constipating. Since gas and bowel motility are some of the most pressing concerns in the first couple postop weeks, it doesn't make sense to continue adding to that problem by taking narcotics longer than necessary.

The usual practice is to be on IV or injectable (narcotic) pain meds for a day or two postop. These are gradually replaced by oral drugs, usually those containing a narcotic such as codeine. Codeine and other oral narcotics have the same constipating effects as the injectables. So while they may be good at controlling pain, they are also not a great long term management drug. Many women go directly from injectables/IV narcotics to oral anti-inflammatories, or use anti-inflammatories to stretch the effects of oral narcotics. In the first few postop weeks at home, anti-inflammatories can gradually replace narcotics while providing still-adequate coverage.

One of the most convenient anti-inflammatory drugs is naprosyn (naproxen), because it has a 12-hour duration of action. This means you can take it at bedtime and still wake up with some in your system in the morning. Using the 4-6 hour anti-inflammatories can mean waking up in the morning in discomfort. Since some asthmatics or those with cardiovascular disease may be sensitive to this whole family of drugs, be sure to ask your doctor about what drugs you should take even when you are ready to leave the narcotics.

Now, all of this presupposes that you are not already on a pain management program or do not have an addictive problem. If this is the case, then you will obviously need to involve your therapists in your operative planning so that you meet your increased pain control needs without derailing your present level of control. The fact of a previous narcotic addiction should not mean that you cannot control your pain during your recovery, but it will obviously mean that you have a greater need for pre-planning and monitoring the situation.

Pain and medication on discharge from the hospital

By the time you are released from the hospital, you should be able to get around and get by, within the limits of exercise tolerance, on fairly mild oral medications. The gas/constipation problem is the source of the most discomfort in the first post-op week or so, and it yields better to specific medications/approaches (lots of fiber, drinking lots and lots of liquids, exercise, stool softeners) than to pain meds (and opiates are especially bad in that they slow your bowel activity down and compound the problem).

What about if my prescription runs out and I'm still hurting?

Your doctor sends you home from the hospital with a standard prescription. That doesn't mean that this is all you can have. If you have used the pills as directed and find that you are running out and will need more, call your doctor's office and let them know. Often, they are more than willing to call a refill to your pharmacy. Other times, they may suggest alternatives that will be effective for the point you're now at in recovery. Whatever the plan, don't feel you have to suffer once the first prescription runs out.

Do be sure, however, that you understand how and how often your take-home pain meds are to be taken. Typically the prescription reads something along the lines of "Take 1-2 every 4-6 hours as needed." That means that you may take them that often (if you need that level of pain relief), not that you must take them that often (to get any relief). All too often women in the fluster of getting ready to be discharged from the hospital are handed a fistful of papers and hear only "2 every 4 hours" and just tear through their prescription and wonder why, a few days later, the prescription that they thought was to last them till their two-week checkup is all used up. Those dose intervals are the most frequent at which you can safely use that medication; it's fine if you don't need to take it that often or if you find that you need only 1-2 in a whole day, just to give a little extra boost to your non-prescription medications.

On the other hand, if you need more medication than that or you feel that even at the largest/most frequent dose you're not getting adequate coverage, it's a good idea to call your doctor about this as well. Your prescription is based on your doctor's expectations of how you should be doing, given your surgery and the speed/extent of recovery he sees when he visits you in the hospital. If you are not progressing as he thought you might, you may need a recheck to be sure everything is going as it should. Your doctor makes treatment decisions based on what he sees in the hospital; he can't see you once you are at home, so if things change, it's your responsibility to let him know that.

You should expect, and demand if necessary, a reasonable and adult discussion of these things at your pre-op appointment. If your doctor is not willing to allow your participation in pain management planning or to discuss his plans with you, then you might be well advised to seek another consult. A surgery is about your needs, not the doctor's.

Pre-op: packing list

Since many of us come to a hyst as our first surgery, we're not even prepared for the experience of being a hospital patient and may have little idea of what we'll need to take with us when we're admitted. Your "closet" will have only room for a single outfit (to go home in) and your belongings must fit on the surface of a small table plus, perhaps, a small drawer, so anything more than that is going to be a clumsy bother. Most of your time will be spent sleeping, drowsing, or walking, so you simply won't need much with you.

Some things you might bring to the hospital with you

1. Pre-op instructions/permits/papers, any pre-registration forms you filled out, copy of your health insurance card
2. Glasses, hearing aides, dental appliances you can't do without. Be sure to bring cases or containers for all, and any necessary cleaning materials. If you don't have to have it, though, don't bring it. You most likely will not be allowed to keep them with you until you reach your room after surgery, so if it's irreplaceable, leave it in the keeping of your partner while you're in the OR.
3. Toiletries: you'll get a toothbrush and soap and lotion as part of the obligatory personal care kit. You will probably get to shower before you go home, but you aren't going to feel like indulging in a lot of frivolity. Pampering yourself sounds more attractive now than it will be when just water flowing over your body will be a delicious treat and simply standing up the height of your physical ambitions. Just bring the bare necessities (we're only talking a couple days, here): conditioning shampoo, deodorant, moisturizer, hairbrush. Two things that you may find especially helpful, though, are lip balm and a moisture (scented water) spray.
4. Hair: if you have very long hair, consider arranging for it to be braided or French-braided before surgery and again the day after surgery: you’ll enjoy not having to wrestle with it. You’re going to need to pamper your hair very seriously for several months post-op if you have general anesthesia (it is very hard on hair), so if you must have a perm, get it a week or so beforehand so you can go awhile after without having to repeat it. Most hairdressers won’t use any chemical processing on the hair of someone who has had surgery for several months. Take a very gentle hairbrush with you, so you can keep the “bedhead” rats gently detangled.
5. Your own sleepwear: not really needed. You’ll want to wear the hospital gowns for at least a little while rather than risk staining your own, and it’s much simpler to put on a second gown backwards than to wrestle your IV into the arms of a bathrobe. Forget struggling with jammie bottoms: bending over is not going to be high on your list, and they are kind of strangling when sliding around in a hospital bed. If you must, make it loose, simple, and no more than knee length. You'll also most likely be wearing heavy elastic stockings or pneumatic leggings and have a catheter for the first day, so jammie bottoms are only going to be in the way.
6. Slippers: slip on, with non-slippery soles (as in: rubber). No matter how cute, anything else is a liability and aggravation. Washable is good, so you can de-hospitalize them when you get home.
7. Books, magazines, tapes or CDs or mp3s and player (extra batteries): you’ll probably want some entertainment, but make it really undemanding. Anesthesia dulls the mind, as do the medications you’ll be taking post-op. This is the time to read frothy stuff and listen to gently soothing music. Anything more will be Too Much Work.
8. Mini-office in a large envelope: notebook for jotting down doctors’ instructions, names to write thank-you notes, keep track of post-op appointments; pens, address book with the phone numbers of anyone you might want to chat with (don’t rely on memory—it’ll be addled by anesthesia); small calendar; consider a mini-recorder to tape your doctor’s visit because you will not remember what he said.
9. A small huggable stuffed animal or small pillow with washable cover. Hugging something to your tummy supports it while you do the coughing and deep breathing necessary to keep your anesthesia-surpressed lungs from getting pneumonia. Also, you will want a small cushion between you and the seatbelt when you go home. Don’t have one? A large bathtowel or small throw works equally well if tightly folded.
10. Clothing: send what you wore to the hospital home with whomever you came with as soon as you undress into your gown in pre-op. There isn’t room in your room for much stuff or a suitcase. Bring something loose and comfortable to wear home. Large panties (a size or two larger than normal, that come up to the waist) are helpful. Make sure you can get into your bra without gymnastics. Slip-on non-slippery-sole shoes. Sweats or a long, loose dress (my personal fave) are best—you won’t be zipping up those levis over that tummy for a few weeks. Remember: this only enough to get you from the hospital to your home without being arrested for indecent exposure; you’re not going on a Royal Progression. Don’t bring: panty hose, garments with back closures, anything snug about the middle. Also, remember that you will need to get back out of this clothing at home, when you are tired from the trip: tight pull-over-the-head things are so difficult to remove that you may end up spending days in them before you can extract yourself. It's perfectly fine to go home in a gown and bathrobe or loose coverup, too.
11. Self-adhesive mini-pads: most of us have a little drainage and these beat the daylights out of the industrial-strength elastic belt and mega-pads the hospital stocks for the maternity ward. Enjoy the thought, when you buy them, that they represent the last time you’ll do business on that aisle of the store!
12. Comfort stuff: eyeshade and earplugs so that you can sleep when you want to, not when your roommate wants. Big bandaids or cut-off sock tops for your elbows (they will be your primary mode of transport in your bed, and those sheets quickly begin to feel lie sandpaper). Backscratcher (if you are prone to itchies)—it also makes a nice extension hand.

Some things you shouldn’t take to the hospital

1. Jewelry of any kind. You may want a watch afterwards, but get someone to bring it in for you after the surgery. Don’t bring any personal adornments—they just get in the way and you won’t want to bother. Check at your pre-op appointment with anesthesia as to whether they will allow you to keep a wedding ring on: some will, taped; others won’t. It’s best to leave your ring in the keeping of your spouse than risk it being lost by someone whose job it really isn’t to keep track of stuff like that. Most anesthesiologists will also require that you remove nail polish and any nail adornments on both toes and fingers—check with yours at your pre-op appointment if this is important to you. Although it’s not something you can leave at home, don’t come in with fresh tattoos or piercings: your doctor may postpone your surgery out of concerns for infection. If your plans include these, discuss them with your doc pre-op (there may also be a time guideline for how long he would like you to wait after surgery, as well). Speak with anesthesia at your pre-op about the possible need for removal of nose, tongue or nipple ornaments; if you are having an abdominal incision, speak with your surgeon about any navel, labial or other operative-area jewelry pieces.
2. Checkbook, credit cards, driver’s license—anything you won’t be using. In fact, leave the whole wallet home: there is no security for your belongings. Bring a small amount of cash for vending machines, pay phone or snacks from the hospital coffee wagon. If you plan to make a large number of long distance calls, you may wish to bring a pre-paid phone card to cover them if you don't have a cell phone.
3. Demanding handwork projects, that challenging book you’ve been meaning to find time to read, anything that takes concentration and involves multiple pieces. They are too hard to keep track of and you won’t have the concentration. Save those for when you are home.
4. Hair dryer, styling stuff: too much effort to hold your arms up that long. Figure out a no-effort hairstyle or braid your hair. Really, no one expects you to look great: go for clean and tidy and the world will consider you radiant.
5. Makeup: ditto.
6. Your own prescription or over-the-counter medications or vitamins/supplements. You should have discussed these in detail with both your physician and your anesthesiologist at pre-op appointments. Do not bring anything in with you unless you and your doctor have previously agreed that you do so. The doctor will also need to write “patient may take own [med]” as an order in your chart in order to protect the hospital staff from liability for any mistake you may make with your own meds.
7. Contact lenses. Use your glasses instead. You will be dropping off to sleep at odd intervals and it’s too hard to get to a schedule of taking them in and out. The care for them is too involved and bothersome as well, and the hospital is full of Bad Germs. It’s only a few days and there’s nothing much you need to see anyway.
8. Abdominal binder, surgical stockings—unless your doctor has specified you should do so. If he wants you to have these, he’ll arrange for them in hospital. Ask him at pre-op: different doctors have different procedures, and reasons for them.

Things to do

1. Listen, take notes (or use a mini-recorder), say thank you. Ask for a copy for your records.
2. State your needs clearly. If they are not met in a reasonable amount of time, ask for the charge nurse. The management tree from there is head nurse, then nursing director.
3. You have the right to question and refuse anything. Ask what that medication is for. If a medication doesn’t look the same as the last dose did or you don’t think you’ve been taking it, ask to see the order for it. If you really think it’s wrong or you really don’t want it, simply state “I refuse this medication. You may note this in my chart and I will discuss it with my doctor on his next visit.” Do not be intimidated at “causing extra work” by asking a nurse to double-check your medication: that is their job and legal obligation.
4. Similarly, if you are in pain and you have had all the ordered medication (or have other medication needs), politely insist that your doctor be notified that it is not providing adequate relief and request another medication order. The fact that it is the middle of the night and the nurse would have to wake the doctor is not an excuse for delaying this. You are paying the doctor and the hospital very well, and not suffering excessively is part of what you are paying them for. If your nurse is resistant, work up the management tree. If necessary, call your doctor's answering service yourself (have that number in your phone notebook) and ask that the on-call doctor covering for your surgeon get back to you asap.
5. Never let your IV run dry. Remind the nurses when it's getting low and really get noisy if it gets to the bottom of the bag. You're the one who gets another stick if it clots off.
6. Move around in bed, with special attention to stretching and flexing your legs, often. In this application, "often" means hourly.
7. Walk. Then walk some more.
8. Deep breathe and cough; use the blow toy as you are shown—these are making you well, so don't skimp. Hourly is good.
9. Drink until your pee is nearly colorless.
10. If your temperature goes up, drink, breathe and walk more. The walking and drinking are also the remedy for gas and constipation.
11. Stand up straight when you walk. Contrary to the way you may feel, your guts are not going to fall out onto the floor.
12. Don’t let yourself be overwhelmed with visitors. Before surgery, suggest that your friends call you to see if you want company rather than just popping in. Visitors are exhausting, especially in the first day or two, so tell them that it will most likely be a few days before you’ll have the energy to enjoy their visit. Also, if there are obnoxious family members or “friends” you don’t want to see, or you want a graceful way to keep the entire 86 members of your family from camping out in your room for four days, ask the nurses to post your room as “no visitors” with your spouse (or single other designated Acceptable Visitor) okayed by you as the exception. If folks are determined to send flowers, suggest that they wait to do so until you go home, where you can enjoy them properly. Hospital rooms are just too small to hold very many things, and that’s not when you will be most appreciative. If they want to do something while you’re in the hospital to show their concern, suggest they have a double-latte milkshake delivered to your room instead ;)

Postop: home alone

While postop planning is important for any of us, I often see questions from women who have recently moved or are otherwise alone and facing recovery on their own. While recovering solo is not the optimum, real world constraints sometimes mean we don't get to pick the very best options and just have to muddle through as best we can.

All other things being equal, being able to stay with someone for a couple days or having someone stay with us for that time makes for a safer transition from the hospital. Of course, this means someone tolerable. This isn't the time to have your evil ex-mother-in-law who expects you to wait on her hand and foot, or a worthless kid who will spend all their time out visiting old highschool friends, or a dear friend who will actually tell you she's busy with her kids right then but do call back any time you need help.

What is it that we will need help with, in those first few days? Let's look at that. First of all, you will need someone to bring you home from the hospital. You will most likely feel overwhelmed by just the minimal baggage from your hospital stay, and it's likely there will be a stop on the way home to pick up a prescription for pain meds (will your pharmacy let your doctor call it in and deliver to your home? check it out beforehand). Just sitting in the car (with a thin pillow between your belly and the seatbelt, for a little protection) will be about all the thrills you'll be up to, right then.

Another benefit of having someone pick you up is that they can help listen to your discharge instructions and take charge of the paperwork. You'll have some sort of written instruction sheet, usually, plus a card with your followup appointment and a prescription. I can't tell you how often women mention losing one or another of these by the time they get home. You'll have enough to do to get your body swathed in some sort of undemanding clothing and into the car; let someone else do the detail stuff.

Once you're home, you'll want to head for bed. Nothing in the world feels quite so wonderful as getting home to your own bed. Nothing. But is that bed up a flight of stairs? Climbing is difficult because you actually use belly muscles to help life your knees, so your doctor may advise you to limit the number of times you go up and down in a day (you'll discuss this at your pre-op, right?). Regardless of the number of trips you're allowed, you can greatly ease the burden on your belly by backing up and down the stairs. That's right: going backwards. Obviously you'll need to hold onto the rail, you can't carry anything, and you need to keep your wits about you and go slowly. But it really does force you to take the lift with your thigh muscles, not your belly. The first time you do it, it's nice to have someone standing by to help steady you if things get too wobbly and exciting. It gets better with practice.

Some of the other challenges you'll be facing in the first couple days at home are getting to the bathroom, getting yourself fed, and taking a shower. Pretty basic things, these are, but they are all fairly demanding to a fresh postop.

It's important to prevent complications and encourage healing for you to walk frequently. In the first few days at home, that's fairly well taken care of just in bathroom and kitchen trips. But if your bathroom is on a different floor from your bed, you may want to reconsider where you sleep for awhile. While some women camp on a sofa or recliner during the day to be close to the bathroom, I feel it's the nighttime trips and the first morning trip with a cranky "I can't wait" bladder that expose us most to haste, trips and possible stumbles or falls. This is a bad idea. Think this through beforehand and make sure that you can sleep someplace on the same floor as a bathroom until you are thoroughly steady and reliable on the stairs before you cut yourself off from the bathroom this way.

One of your major tasks in the early postop days is getting enough to drink. How much is enough? Enough that your urine is very pale. This means that every couple hours or so you'll be making a potty stroll. That sounds like a lot, but since exercise is another of your goals, this is a nice twofer. And while some women recommend keeping an ice chest next to your bed with drinks and snacks, that begs the problem of how it gets there if you're on your own. In fact, walking down to the kitchen to get a snack or another drink is more good exercise. So going to get a drink and walking to the bathroom to get rid of your last drink should provide a nice little perpetual motion effect for you.

And then there's the shower (assuming you've been cleared to do so by your doctor--ask before you leave the hospital). Showering feels wonderful, but includes some special perils so it's good to have someone standing by outside the bathroom in case you need to call for help. What kind of perils? First of all, you're not going to be nimble climbing in and out, especially if it's a bathtub shower such that you have to climb over the side of the tub. Take your time and hang on. Putting a waterproof kitchen chair in the shower may give you something to steady on plus a way to sit down if you get woozy. This is a good time to get one of those ucky old rubber tub mats, too. With your balance thrown off by a wonky belly, you need all the help you can get staying on your feet. And remember to put towels within reach so you can dry off before you try to climb back out. You can do all this alone, but someone "on call" for the first time is just good sense. A fall or even a flailing about attempt not to fall is not a good idea.

So, to prepare for these early needs, you'll need to walk through what's needed in your home. In your bedroom, do you have a variety of pillows and covers available? Where are the spare sheets—you'll be wanting clean sheets at least once before you can comfortably root around in a crowded linen closet's upper shelves. Can you reach a reading light from in bed without stretching? Is your bedside table big enough for a drink, kleenex, book, glasses, music device, laptop, TV remote? If not, move one in, move a reading lamp in, pile spare linens around on the furniture. Don't be worrying about a little clutter, since what is much more important is conserving your energy for needed tasks. Believe me: tidy matters not nearly as much as convenient when you are postop.

And while you're looking your bedroom over, how about clothing? At least a couple clean gowns/jammies need to be grabable without pulling out a heavy dresser drawer. Where are your robe and slippers? You may want some loose caftan-like garments or sweats to wear during the day so you are presentable for any visitors.

How about your bathroom? A couple rolls of toilet paper and maybe some moist wipes (you may be dealing with some constipation) within reach of the toilet? Several sets of clean towels out where you can reach them? Mild bath products in small enough bottles to lift easily and toiletries out of tricky cabinets? Tub mat? How about making sure you have a selection of reading at hand by the toilet? How's the light at night—will you need a night light or a temporary lamp near the toilet? And while you're thinking nightlights, how's the route between bedroom and bathroom lit? When you're foggy from drugs and in a hurry with a crabby bladder, you may not want to stop to fiddle with light switches in the dark.

And then, the kitchen. You'll be wanting lots to drink, of course. It's good to limit caffeine, just because that is a bladder irritant. Fruit juice (cranberry is especially good because of it's infection-resisting qualities), diet sodas, powdered drink mixes are all good things. But remember that you can't life the big bottles: things need to be in small containers. If you use a powdered mix (like Crystal Lite and those sorts of things), mix the full package in a very small, say 8-oz container, and just dilute it with tap water to make up the strength to taste. If you're a fan of ice, can you easily get to your freezer? Before you leave for the hospital, how about getting several trays of ice emptied into a container so ice doesn't require wrestling with a tray?

Most women tend to want fairly simple, blandish food in the first couple weeks postop, no matter how spicy and exotic their taste normally is. It's fine to eat more frequent small meals, but it's very important to make sure you get lots of fiber and nutrients. This is a good time to stock up on small yogurts, dried fruit, and other (wholesome) nibbly stuff as well as freezing single-serving meals. Make sure you can get to the utensils you'll want to prepare/serve/eat with. And if your dishwasher takes a lot of bending/twisting to fill, consider a small stock of paper plates to tide you over the first week or two. In the first couple weeks, opening a package or nuking a single serving are going to be about the level of your enthusiasm for eating. Smoothies are a great recovery meal too, if you like them and can keep frozen fruit easy to reach.

After a week or so, the level of chaos and dust may start getting to the tidier amongst us. Personally, I can ignore the dustbunnies up until they are large enough to trip over, but I appreciate that others may have more delicate sensibilities. If you know that you are going to be unable to resist grabbing a dustcloth or vacuum, please plan ahead. This is not something you'll be cleared for yet and really isn't a good investment of your healing energy. If you just can't live in chaos, arrange for a maid service, offer to pay a college kid, or ask a friend or church group member for help doing the heavy tidying up and laundry for the first few weeks.

And if you have pets, you'll need to plan ahead for their needs as well. A dog on a leash is more than you can handle, even if they are very well-behaved. If you don't have a fenced yard or a long tether for them, you'll need to arrange for someone to come in to walk them however many times a day is needed. If you have hard-to-control dogs, especially ones that are incorrigible jumpers, you may even want to think about boarding them out for the first week or so of your recovery. If their food involves lifting heavy cans or bags, consider parceling out those kibbles into smaller plastic containers you can keep on a counter for a few weeks and/or freezing single-portion dog meals. For cats, make sure that the litter box is something you can reach without serious effort (bending/twisting is especially difficult). If you frequently change the whole box, you may need to arrange for someone to do this for you. Alternatively, consider clumping litter that will allow you to scoop the used out (into a covered pail you keep by the little box till someone can dump it for you) and refill by scooping a small amount from an open bag you keep nearby. If your cat food is in a heavy or awkward container, consider repackaging it for easier access. And to protect your belly from enthusiastic jumpers (it is a frightening thing for all concerned to be dozing on a sofa postop and have your small dog or cat suddenly jump up for a snuggle and land on your incision), get in the habit of resting a pillow on your belly whenever you are sitting or lying.

Communications are another thing to think about. If you're going to be spending most of your time alone, make sure that what you'll be wearing has a big pocket that will hold your cell or portable phone. If you fall or get too woozy to leave the bathroom or anything really scary happens, it will be well worth the inconvenience of carrying that phone around to have it right on your person. Program in a couple numbers for people who can come in an emergency, in a hurry. The odds of your needing this are very low, but it will give you a sense of control that can be a comfort. Otherwise, having your phone on you lets you answer the phone without feeling the need to heave yourself up out of wherever you just got settled to take another call from yet another telemarketer. Don't feel you have to be at the world's beck and call--if you don't have a recorder of some sort, this might be a good time to get one. Leaving the volume up so you can hear it wherever you're hanging out so you can screen your calls is a great way to husband your energy for your own needs.

It's also a good idea to think of other household chores you may not be able to manage. Does the yard need to be watered or mown? Will you need to have the front walk shoveled free of snow so the postman can bring your mail? Who's going to refill the birdfeeder or water the potted plants on the deck (no, it will not be you picking up that bag of feed or full watering can for a couple months)? How far away is your mailbox? Can you let a few days' worth of mail accumulate or should you have the Post Office stop delivery for a few days? Do you need to drop a rent check at the condo office? Will your library books need to be returned (most libraries will let you renew by phone, so check with them on this)? Is there a newspaper delivery you will need to put on hold? How about your garbage/recycling pickup? Got enough furnace fuel and cooking gas to last the next couple months?

And of course you'll want some entertainment. If the weather's good, you'll be able to walk outside as soon as you can extend your range beyond the bedroom-bathroom-kitchen circuit. This is a big boost to the spirits, so even if you're not normally an outdoor walker, go for the air and sun. Remember that in the winter the footing will be tricky, though. A (light) cane or walking stick plus good boots will make a lot of difference in your stability.

I'm sure you can figure out getting movies/DVDs, or a big haul of books from the library. Don't make this the occasion for all those weighty and improving books you've always meant to sit down and tackle, though. Anesthesia and drugs have a clouding effect on the brain, and for the first couple weeks, at least, you'll find that only the most trivial, easy to pick up and put down froth will hold your interest. And light reading refers also to the books themselves: a paperback is easier to lift and rest on your chest while you read reclining than a great unwieldy hardcover. Ditto projects. This will be a good time to get photos sorted and put in an album, but only if it really engages your interest. Simple needlework or crafts that can be done reclining are appealing, but anything that requires that you sit at a desk and work attentively, not so much. Sitting itself will not be comfortable (it's very fatiguing for the belly) for several weeks. A sofa you can sprawl on (put a hassock out if you have one) or a recliner with a good side table are where you'll be spending most of your time, and so your entertainment and projects will need to work in that sort of setting. This also goes for your computer, if you use a tower rather than laptop and plan to use it much.

After a couple weeks you'll be feeling friskier, even though not quite ready to drive on your own (that depends on what your doctor and insurance company have to say). This is when you'll want to take up those folks who offered to do things for you by asking for a lift to the grocery store. You won't be able to lift your bags or carry them into the house, so be sure your ride is okay with giving you a hand. It's also challenging to push a shopping cart, and many women report that the motorized carts are absolutely the way to make your first few shopping trips. Remember, if you've done your preop shopping well, you'll only be out for fresh vegies and fruit and dairy and such on this trip. Right?

So, really, your greatest needs for other folks are when you first are ready to go home plus rides on other needed errands, a little early supervision, pets/chores that you can't handle, occasional cleaning and laundry, and backup in case of problems. By preplanning and setting things up before you leave for the hospital, then, you should be able to handle your hyst recovery fairly independently if your postop course is typical. It's a good idea, however, to at least rough out a fallback plan in case you develop some sort of complication or find that because your surgery did not go as planned, you aren't quite as able to manage on your own as you'd hoped. Overall, though, your greatest challenge will be the same as women living with any size of family will face: moderating your activity to only that which you can manage without injury or robbing yourself of energy needed for healing. Please repeat after me: I will get only one chance to heal well, and so I'm going to do a conscientious job of it.

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.