Thursday, September 30, 2004

Ovarian failure following hysterectomy

If you have retained your ovaries when having a hyst, you may be surprised when your hormone output drops after surgery. Sometimes this simply represents slight ovarian insult from the damage to surrounding blood vessels and nerves during surgery, and as healing progresses, these symptoms abate.

But about 50% of the women who retain their ovaries experience menopause within five years of their surgery, irrespective of their age at the time of surgery. This means, for any given individual, a whole range of possible experiences from menopause right after surgery to menopause at whatever time it would otherwise have occurred. The most important thing we can gain from this statistic, though, is the validation that if we are experiencing menopausal symptoms sooner than we'd normally expect, this could be the reason.

It's common for this postop ovarian impairment to be referred to as "sleeping" on many hysterectomy message lists and forums, but the situation is not really as simple as this implication that they might "wake" back up again. While it's true that the impairment—which is actually a drop in their hormonal output—may resolve entirely with time and healing, that is not necessarily the case. Ovarian output is not an on/off function like a light switch. In fact, ovarian output may simply decrease somewhat and remain there; it may fluctuate considerably; it may just decline and keep on declining. There are many patterns of ovarian behavior and operative impairment does not necessarily cause any particular one. But whatever the pattern, if your output decreases below your level of hormone needs (which continue at a low level even though you no longer need to support fertility and uterine cycling), then you will experience some level of menopausal symptoms, proportional to the amount of shortfall in meeting your remaining needs.

It has been some women's unfortunate experience that their doctors are unfamiliar with this phenomenon and deny them any menopausal support on the grounds that because they still have ovaries, those ovaries must be working. If you are in this uncomfortable position, here is some of the documentation that might help you educate your doctor about this outcome.

  • "A number of medical studies have documented that ovarian failure occurs frequently in retained ovaries following a hysterectomy... " (source)
  • "Another worry is that hysterectomy with ovarian conservation may precipitate early menopause. This seems to be supported by a mean age of ovarian failure in hysterectomized women of 45.4 +/- 4.0 years (standard deviation (SD)) as opposed to a mean age of 49.5 +/- 4.04 years in a non-hysterectomized control group (5). According to the same study, the indication for carrying out a hysterectomy did not change the time of ovarian failure. Postal questionnaires sent to hysterectomized women, with ovarian preservation, suggest that 26.1% (8) to 39% show signs of ovarian failure (6). The type of incision appears not to have any bearing on the failure rate (8)." (source)
  • The effect of hysterectomy on the age at ovarian failure: identification of a subgroup of women with premature loss of ovarian function and literature review. (Siddle N; Fertil Steril, 1987 Jan)
  • Riedel HH, et al; Ovarian failure phenomena after hysterectomy. (J Reprod Med, 1986 Jul)
  • Owens S, et al; Ovarian management at the time of radical hysterectomy for cancer of the cervix. (Gynecol Oncol, 1989 Dec)
  • Habelt K, et al; [Symptoms of ovarian failure after hysterectomy in premenopausal women. A retrospective study based on postoperative perception of 245 women] (Zentralbl Gynakol, 1996)
  • Menopause: The Journal of The North American Menopause Society, Vol. 5, No. 2, pp. 113-122, Hysterectomy, Ovarian Failure, and Depression, Gautam Khastgir, MD, FRCS, MRCOG, and John Studd, DSc, MD, FRCOG (abstract)
  • "If a woman has a hysterectomy that leaves her ovaries in place, she has a 50% chance of suffering ovarian failure within five years of surgery. This is not age dependent." (source)
  • Message list posting that cites numerous sources
  • Relation between hysterectomy and subsequent ovarian function in a district hospital population, Quinn, A.J.; Barrett, T., Journal of Obstetrics & Gynaecology, Mar94, Vol. 14 Issue 2, p103 (source)
  • Siddle N, Sarrel P, Whitehead M. The effect of hysterectomy on the age at ovarian failure identification of a subgroup of women with premature loss of ovarian function an literature review. Fertil Steril 1987 ; 47 : 94-100. (abstract)

Wednesday, September 29, 2004

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.

Tuesday, September 28, 2004


While I haven't begun to exhaust pre-op topics, I'm going to flip over to the other side and talk about healing and postop stuff for a bit, since it's important even to those just at the planning stages to understand something about what is involved in the healing. Although it's easy, when you're looking at this surgery, to focus on the operation itself as an endpoint, in fact that is simply the beginning of the real work: healing. And it's how well you undertake the active work of healing that determines the ultimate results—and your satisfaction with them—of your hyst.

The main tasks of postop healing from a hysterectomy (of any type)

The earliest weeks of healing have three basic objectives:

  1. Watching for/protecting from infection: nothing in the vagina for 6 weeks, minimum; get specific permission for bathing/swimming (doctors vary--I got permission for both once my staples were out; others wait at least 6 weeks); report any smelly or pus-like discharge, incisional heat/redness/swelling, or elevated temperature; and keep your incision clean and dry.
  2. Protecting internal healing by not lifting anything heavier than a coffee mug (well, 5ish lbs) or doing anything that is so joggly that your abdominal contents whip around and stress all the gazillions of internal sutures. This includes doing laundry, running a vacuum, riding a bike, doing exercises other than walking until you have specific clearance (again, usually at 6 weeks or so). This also includes driving a car—don't do it until you are released, both for the protection of your healing and for the protection of the rest of the world who would be imperiled by your inability to react/brake/move as quickly as you should.
  3. Enhancing good tissue healing by getting plenty of fluids, eating a diet with adequate protein, fiber, iron and other nutrients, gradually increasing your physical endurance by walking more each day, every day (my own rule of thumb was to exercise only as far as I could recover in a nap that day—no carrying over fatigue). Naps are good: nap at least daily up till 6 weeks and whenever you need to after that.


One of the big questions everyone has is sex. The "nothing inside" rule is firm, firm, firm. The risks of damage to dissolving sutures, not to mention infection, are too high. At that early stage of healing, the scar tissues are too stiff and inelastic to stretch without tearing—and if you open your cervical cuff (the place where they have closed off the top of your vagina, creating a pseudo-cervix that supports and closes the end) at all, you've opened the whole contents of your abdomen to communication with the outside world (Big Yuck). Also, some women have suture ends in the vagina whose sharp ends men have run into, causing catastrophic loss of...interest. This does not mean that you cannot satisfy your partner using other means, and does not mean that you cannot test out your response on your own or with your partner using non- penetrating/non-contaminating methods. Usually it's good to ask your doctor when it is safe to experience an orgasm (which stresses all those internal sutures and healing points) and wait a bare minimum of at least a couple weeks before trying this, just to allow internal healing to get a good start.

Healing sensations and time

You will experience a lot of twinges and zots as healing takes place. Nerves and other tissues heal at different rates, so these sensations spread out over a couple months.

Healing is not a smooth curve, but rather a series of steps in which one type of scar tissue forms, then is dissolved and replaced by another. Healing starts with a scab, and then gradually moves toward the end result of smooth, strong, elastic scar. In the interim stages, that new tissue is vulnerable to damage.

One of those periods comes at about 12 days, when the earliest scarring resolves into a stronger one and sutures are dissolving and letting go. It is very common to experience a little spotting or extra twinging as your body readjusts things in this first major healing stage.

Skin numbness and burning are also common in a nerve healing stage. I've heard that nerves regenerate around your incision at the rate of about an inch a month, but not all abdominal numbness or edgy sensations from cut nerves go away, even with time. This is typical of any surgical incision, and isn't special to a hyst.

You can expect to go through these tissue healing stages for at least two months, and it takes six months to a year to reach maximal healing. That's right: that long.

OMG, it takes how long?

My doctor said I'd be all healed and ready to go back to work in 6-8 weeks. Now you're saying a year. What's with this?

This is a classic "apples and oranges" situation. From your surgeon's perspective, by 6 weeks you've healed through the immediate postop period in which you are likely to have complications from the actual surgery itself. He can't do much more for you, now—it's up to your own body to finish the process up—so he considers you "done" as a patient.

But that only means that you've gotten the early, most fragile work finished. From this point, healing is slow but steady, without a lot of drama. But for the first six months postop, you're still doing heavy healing as all those scars turn to good strong tissue and your nerves grow back. The drain on your body will express itself as much more fatigue that you'll expect, and you'll continue to have some belly swelling late in the day or when you overstress the healing area. You will reach about 80% of your total healing by roughly six months and it takes the rest of your first postop year to reach 100% of the healing you will ultimately achieve.

If this amount of time seems astonishing to you, you have a lot of company. Overwhelmingly, women who have had a hyst say that the single thing they were least prepared for is the duration and extent of postop fatigue. That fatigue, I'll point out again, is due to the complexity of the surgery and the great extent of physical healing involved; it's nothing specific to the actual nature of the organs removed.

My postop body

What happens to the space where my organs were? Is there a big hole now?

The healthy uterus is really quite small—barely a small woman's fist in size. So it's not as though there's a huge space when it's gone. Now, those of us with the fruitbasket of fibroids (have you noticed? everyone's is "big as a grapefruit" or "a cantaloupe" or whatever) have gotten used to everything being shoved out of place and cramped in by our oversized uteruses. Frankly, when a big uterus full of fibroids goes away, the sensation is a big "aaahhhhhhhh." You regain your bladder capacity, your bowels don't snarl themselves up trying to empty, and everything just feels like a better fit again. Your guts may actually feel a bit "slithery" for the first few days, but that's okay--they are on panels of slippery tendon, and meant to do this. That sensation goes away once everything has moved back into its rightful place again. And because that newly-vacated space is so small and your innards are meant to move around, things just ease back into position and "fill" that space right up.

Do the abdominal muscles bridge the gap created by the incision in surgery? Do these muscles ever grow together again?

Yes, they are firmly sutured back together, bringing the cut edges back into alignment. They will heal (scar) back together and be essentially a strong as they ever were.

If they do not heal fully or the scar is weak and rips back open (in the muscle layer—not through the skin!), then you have a condition called a "hernia." This can be repaired later, either by a surgery with an incision or by a laparoscopic procedure. Women who fail to take adequate care of their healing belly tend to be more prone to later hernias along that incision line.

The scar

How can I minimize my scar? What will help it heal?

I've heard of women using Mederma, but does it really make a big difference? That Mederma is pretty pricey stuff.

What about vitamin E? My hairdresser says that really makes a scar disappear.

I've seen women report being very satisfied with Mederma, but also women express the same results in roughly the same time frame who were using vitamin E or nothing special, so it's hard to make a call on this. To some extent, your scarring will reflect every other scar you've ever had: if you tend to heal nicely over time, you most likely will have a minimal scar (assuming a tidy surgeon); if you are prone to large, lumpy scars, this one may follow suit. Women with a history of keloid scarring may need to make their surgeons aware of the problem and ask to have special measures taken to try to minimize the keloid tissue formation.

I personally used the oily contents of a regular vitamin E capsule massaged (gently) into mine a couple times a day, and I'm quite happy with how mine healed. To be honest, though, I have no idea whether the vitamin E had any particular effect or whether it was simply the massage...or just my personal healing style. Doctors are divided in their opinions on the efficacy of vitamin E for healing. For some months my scar was red and hard and lumpy, but now it's just a white to pink line. Just remember that you don't want to put anything on it till the staples are out and it's scabbed over well. And whatever you put on should be pretty simple stuff—I accidentally got some body moisturizer on mine when it was still fresh and that stuff really burned until I rinsed it back off, even though it's fine on the rest of my skin and I use it all the time.

Recovery period: household chores

One thought for your husband/family needing direction with household stuff: don't forget that just because you can't, physically, do the chores doesn't mean that you can't verbally direct someone else in their performance. The way I look at it is that the recovery period promotes you to management: you point; they jump.

On the other hand, several women I know have successfully convinced their husbands that having a hyst means that you can never vacuum again. I leave you with this thought in hopes that happy creative contemplation of it will help pass the time until your surgery.

Healing and exercise

But do you really know, medically, about the harmful aspects of stretching? If I just stretch to the point of not feeling a real pull, wouldn't that be all right?

What I know is the basic physiology of healing and the basic post-op care of wounds. There are multiple healing phases between the initial cut, scab, and eventual scar tissue, and even that scar can, years later, change due to things like nutritional status (as an aside/example, fr'instance, severe scurvy causes old scars to reopen). It's not a case of cut once/heal once. Every 12 days or so your body goes through a stage in which the past stage of healing is dissolved/absorbed and replaced with a new, stronger stage. At those points, when this is going on, the ultimate strength of the scar tissue is vulnerable to stresses put on the scar area as that dissolution/replacement is going on. And, since the cells along an incision/scar (remember: we're talking all the internal repairs as well as the surface incisions on your belly and in your vagina) aren't all on exactly the same schedule, there's a fairly good-sized window for damage to occur.

Now, don't let this feed too much paranoia, ladies. I'm talking about severe events, not just routine living. But stretches and exercising, especially impact loading with acceleration/deceleration, are the extreme sort of stress that can indeed damage the scar. And you might be fine even so. Or, in another 30 years, you could find yourself with a little hernia. It's about setting up the odds of getting the best possible results.

Who can know how far along I am in healing? How can I tell when it's safe? Would a physical therapist feel or take x-rays?

No. They can look at your stage of exterior healing and utilize their training and experience in predicting broad norms for when you are ready to do something (and that is valuable, don't get me wrong), but they cannot make firm and absolute determinations of exactly when it is or is not safe for you, nor can they quantify in any specific way exactly how much you can stress a given area. Even a PT, if they were working with you as a trainer, would be wanting feedback from you on how hard you are working that surgical area. They would tell you more or less what I have: you need to listen to your own body and you are the best judge of how much you are stressing it with any particular activity.

Am I being conservative here? Yes. I do this from the firm belief that we only get one chance to do this right, and the investment in patience pays off years later. When it's only a matter of a month, the line between cautious and go-for-it, I do firmly believe that staying on the gentle side of the line is correct. At the same time, I don't believe in being inert--you need to push yourself up to that line to hold your own while the healing is going on. Personally, I believe that line lies where you can feel a little stretch but not a pull. In the early healing months, gentle exercises limited in effort and building endurance seem to serve our needs best.

Are there websites or books that will tell me specifically what exercises "bind" the abdomen horizontally across the vertical incision?

No. There are no single broad bands of muscle that run laterally across your belly, and belly tone is provided by layers of muscles running in different directions from different attachment points. What you need to do is exercise and strengthen all the muscles together. Over-training one set and not the others will affect your posture and can lead to back pain. You need to work them all.

The good news is that those muscles will gradually begin to regain tone just from the normal activities of daily life. At first, this includes things like rolling over in bed and getting up to the bathroom. If we are careful to stand upright, fully straight, instead of hunching over, we are already exercising those muscles in the right way. As we can do more, like walking further and going up and down stairs, we gradually work the muscles harder in a very gentle way and they can resume more and more of their usual load. It's important to hold to the fine line between challenging them and over-stressing them, which is why early stomach-flattening exercises are a bad idea and can actually cause more damage than help.

After all that giant uterus I had taken out, I thought I'd for sure have a nice flat belly after surgery. Instead, I look six months pregnant. Help! How can I get this to go away?

There are two things going on in belly healing. One is the muscles re-attaching at the cut and forming a good scar, as well as regaining their former tone. The other has to do with swelling as the day goes on, which includes some fluid collection in the tissues due to circulation disruption during surgery. This is really the same mechanism as the swelling that recurs in a sprained ankle when you use it too heavily again, even months after it has seemingly healed.

You will get—especially—afternoon belly swelling long after you have regained enough muscle strength to sit up without pushing up using your hands, perhaps for 6 months or so. It's easy to blame that limp afternoon belly on muscles, when it really isn't entirely that and it will (yes, really) resolve with time. I know that even with my horizontal incision, I spent several months wearing loose dresses rather than pants that turned into tourniquets as the day went on. This is normal.

So, much as firm answers sound as attractive as a firm belly, neither one is exactly within reach. Sorry.

I've seen women ask about wearing a "belly binder" postop, or a girdle. Should I do this to help support my belly?

No, not unless your doctor specifically recommends it. This is a sort of old-fashioned thing that is now understood to be counterproductive. By supporting your belly and taking the workload away from your muscles, it actually delays the process of their regaining their own strength and can result in weakened abdominal muscles. There's also the risk that too tight a binder or girdle will cause circulatory trapping that can lead to blood clots.

It's healthier for your muscles to be gradually and gently challenged by everyday activities. It's also important to stand up very straight, even right after surgery, so the muscles don't shorten to your hunched-over posture. Your doctor has stitched you up very firmly: you are not going to have your belly break open, so stand tall.

Once you're more active, the discomfort of jouncing your belly around serves as a good reminder of when you're over-doing and stressing healing tissues. Once you are standing/walking more, you may find that wearing a light pair of control top pantyhose or elasticized panties will support your belly while shopping or other gradually lengthening activities, but don't use it as an excuse to over-extend yourself and do be wary of the tourniquet effect.

Remember: your goal is is to retrain your belly muscles to resume their normal work, not to substitute elastic garments for them.

A rough schedule of post-op recovery

It's all very well to talk about finding our own level of healing, but it's also scary not knowing what to expect or not knowing whether we're healing as we should be. Things like our pre-op state of health, our specific operative pathology, and the exact procedures we had done are really the driving influences. But for those who would like a general set of guidelines, this is roughly what a broad average looks like.

Week 1: comfort, exercise and rest

Focus is on balancing comfort with the need for exercise to get your system moving again (prolonged bed rest is especially hard on lungs, guts and the circulatory system [= clot risk]). Pain meds are good, but narcotics cause constipation and so should be used judiciously. Many of us feel only moderate "be careful" discomfort rather than "knock me out, please" pain, so don't plan on being in agony. Drinking a lot along with exercise (walking increasing distances at increased intervals, with rest in between) are your best strategies. Watch for signs of postop infection.

Week 2: pacing your recovery

Focus is on increasing your endurance and stamina. You'll feel substantial improvements daily, but will need to moderate growing impatience to be up and about with the need to continue devoting your energies to healing. Lift nothing heavier than a mug, continue heavy fluids and eat plenty of fiber to keep your guts going in this ongoing lowered activity. You'll have your staples/sutures out and be healing on the surface if you had an abdominal incision, but all surgeries still have a long way to go to heal internally. Don't rush. Oral anti-inflammatories or mild pain relievers, longer walks outdoors, and a daily nap characterize this week. Also, bathing may be permitted if it hasn't been by now. Your belly will still be poofy and flaccid, but you'll see improvement over week 1.

Week 3: not a setback

Your increasing stamina will cause you to do more than you should, thus leading to increased fatigue and a feeling that you are losing ground. This is a major turning point in internal healing, but to you it will feel like hitting a wall: more fatigue just when you are bored; more abdominal discomfort just when you thought you were really getting on top of things. It's not a disaster, but it's very frustrating. Plus, you're bored with walking and all the housebound stuff. You can't drive for at least another week (many insurance companies won't cover you yet), but you're ready for more car trips with someone else. Most of us go out and overachieve in a giant box store and come home discouraged this week. Will you ever be better? Yes. But you can't zip your levis yet.

Week 4-6: more visible progress

Progress picks up again. You're still aware, every day, of having had the surgery but you will be able to sleep on your stomach again and move around more freely, without always thinking of your belly. You continue to need a daily nap, and shouldn't stint on it as you need the energy to devote to healing. Clothing is a totally boring agony: returning nerve function along belly incisions can cause great (albeit short-lasting) irritation; best choices are sweats/tights/long loose dresses. You are doing more around the house again, but still need to limit what you lift; you can drive again. You may get the okay to resume sexual relations (with vaginal penetration). This is scary the first time. Talk with your partner about your concerns and try to arrange a position in which you can control the depth of penetration. This is not the occasion for circus sex.

Week 7-8: nearly there?

You feel nearly back to being able to do stuff, and you are getting ready to return to work. You should still nap any time you feel tired. Your clothes still may not fit. You may have a second checkup now, and get clearance for work. If you have a job that is physically demanding, ask your doctor for a written direction as to lifting and other performance limits to take to work. You may get your doc's okay to return to your fitness program so long as it doesn't stress your belly (fitness swimming is good; step aerobics is not).

Month 3: why am I not all better yet?

You return to work and are floored at how totally wiped out you are for the first week. Plan on nothing more than work and sleep. It will get better. Don't feel bad about napping, although it won't happen on a daily basis any more. You are still only about 75% healed. More of your clothes fit, but you are motivated to develop a fitness/weight reduction plan. If sexual relations are still uncomfortable, check with your doctor to see if a little vaginal estrogen might enhance healing and elasticity.

Month 4-6: reaching 80%

By the end of this period, you have whole days that go by in which you do not think about having had surgery. Your incision is fading. Your vaginal scarring (the cervical cuff or other incisions) is resolving and becoming more elastic, and sex is less nervous-making. You are 80% of the way to your ultimate extent of healing, and have resumed most of your preop activities (or perhaps more, if you were seriously impaired by your preop condition).

The rest of the first year: leaving your hyst behind you

By your hysterversary you are 100% as healed as you are going to get. Abdominal incisions may still be sensitive to pressure. The surgery begins to fade as part of your identity. Any hormonal changes wrought by surgery and subsequent HRT should be settled down. You are moving on.

Sunday, September 26, 2004

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.


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.


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.

Saturday, September 25, 2004

Preop concerns

Many of us come to this surgery as complete novices and when our doctors' appointments are rushed, we don't always get to explore all the questions we might have. Today I'm going to look at some of the questions I see asked a lot on HysterList.

What if I'm having my period when it comes time for surgery?

Don't sweat it. It is truly irrelevant to the surgery, so long as you don't get such a head start on things that you get anemic right beforehand. Call your dotor's office and check, but I suspect that their only concern would be that you wear a pad, rather than using tampons, just to limit what's had a chance to grow in there (sorry to be gross). But many women have gone to the OR wearing a pad, and it will be dealt with once you are anesthetized. It's not something that the OR crew is going to give a second thought to, really.

Look at it this way: how better to celebrate than to go in gushing and to come out spotting?!

Does the nausea go away before they release you from recovery or will the nausea continue?

It depends on whether the nausea is in response to anesthesia, in which case it'll go away, or the pain meds you're getting, in which case it may linger as long as you get that particular drug. Generally speaking, if it lasts more than a few hours after you get back to your room, you need to consider asking for a pain med switch.

Can we shave ourselves prior to coming to the hospital or must we let them do it?

Yikes, no! Be sure sure sure you ask your doctor about this. Some will okay it, but others feel that the slightest nick exposes you too much to the risk of infection. I've seen surgeons walk out of the room and cancel a surgery when they found self-shaved patients. Don't get all modest—the nurses in pre-op are very low-key about this and won't make you feel like a spectacle and by and large will do a better job than you can. And many docs no longer feel a full shave is necessary: mine just had the nurse run one swath across the top with the clippers, down to about 1/4", to keep the hair ends out of my just-above-pubes-line incision. And I was pretty grateful later, when all I had to suffer the crazy-itchies-stickery-grow-back from was that little line.

What is a "bowel prep"? Does everyone having a hysterectomy have to have this done?

It's some method of cleaning out your large intestine, whether laxative or enema or one of the new "lytely" drinks. The objective is to lower the bacterial counts in the bowel and to prevent post-op constipation.

Please do not do this unless instructed to by your physician.

I apologize for shouting, but this is very important. Not every surgeon wants their patients to go through this, and because it can have serious effects on your operative/post-op fluid status, it's very important that you do exactly as he tells you so your status is exactly as he expects.

Think I'm over-dramatizing? Consider this story:

In the chat room of a big hysterectomy board a couple years ago all of the "knowledgeable and experienced" women present encouraged a poor scared pre-op lady to do her own bowl prep "just to be safe" even though her doc had not ordered one for her. She did this according to their instructions, and was so dehydrated from the process that she required many extra hours and considerable extra treatment in the Recovery Room before she was stable enough that she could go to her room. Yes, from just a little bowel prep, and the surgeon/anesthesiologists' assumptions about her status that she made incorrect by her actions.

So please, discuss this with your own surgeon, who best knows how he plans to do the surgery and what your own physical condition is. And if he does want you to do a prep, he will specify the agent and when and how it is to be taken. If for some reason you don't get these directions, call the office, call the on-call service—call until you do get clear, personal directions on how your own surgeon wants this procedure done. It's for your own good, and, really, isn't the best possible surgical outcome what we're all rooting for?

Why would your doctor not want you to do this prep? Many surgeons believe it's an outdated concept in that you cannot sterilize the bowel in the time and with ordinary measures, so the risks of the stress are worse than the risks of puncture and contamination. Obviously, women with rectal repairs don't fit into this picture, and may have special preps.

The same thing, by the way, goes for pre-operative douches and any other schemes you might cook up or have helpful folks recommend. Aside from a good diet, cutting down on caffeine, and major hydration, you should only do what your doctor tells you to do: no more, no less.

My doctor said to take a fleets enema the night before and also a betadine douche. Why can't the enema and the douche be taken on the morning of the surgery?

There may be more prep then, but the really crucial thing is the timing. You need to not be responding to the enema as they are taking you into the OR, and you need to have had all that douche drained out and the bacteria as discouraged as possible (takes time) before surgery.

Also, is a betadine douche sold over the counter?

Yes, it should be. I suggest buying all your prep items at least several days beforehand, so that if your chosen outlet is out of them, you have time to locate them without being in a pre-op panic.

Also, if you have never had a betadine douche, test a little on your inner labia for about 15 minutes, just to be sure you're not allergic to or excessively irritated by the betadine. Some women can tolerate it on regular skin just fine, but it's too severe for their more delicate vaginal membranes. Burning or itching would be what you'd experience. It's one of those things it's good to figure out before you douche with it—your doctor does not want to look in there ready to do the surgery and find blisters, oh no. And unless you've been instructed differently, do the douche after you have emptied out from the enema and washed up well with regular soap and water. Beyond that, read the directions on the douche (if you haven't been given others on how to do it, how long to hold it in, etc.) and follow them.

What supplements and stuff do I need to stop taking for my surgery?

There's an interesting article from the American Medical Assoc. that succinctly sums up which herbs to stop when, and why. If you have trouble accessing it, just know that "the eight most commonly used herbs that can impact surgery are valerian, echinacea, ephedra, ginko biloba, kava, garlic, ginseng and St. John's wort."

The article also offers "the following guidelines for discontinuing herbal use before surgery:"

Ephedra, ginko and kava - stop using 24 to 36 hours before surgery Garlic, ginseng and St. John's wort - stop using one week before surgery Valerian and Echinacea - start tapering off use two weeks before surgery

The author says "prospective surgery patients should also check the ingredients in vitamin supplements to see what herbs may be included."

Do be sure to include all the herbals and vitamins and otc meds you might be taking when you have that "what are you taking" chat with your surgeon and anesthesiologist. Quite a few really innocent-sounding things will interact with anesthesia (which is really a whole bunch of different drugs, carefully balanced to work together) and pain meds and antibiotics. This just isn't a time to second-guess them: tell all. And if you are taking a combo supplement product, lug the bottle along (or transcribe the ingredient list: there are too many brands and the name won't mean nearly as much as what's really in it). Don't rely on your memory for this, either. Write out a list to give your doctor to put in your chart. And when you're discussing them, do ask your doctor when it will be okay to resume taking them.

I'm not wild about the idea of getting a transfusion. Who would I ask to be very cautious in doing this?

Everyone: your surgeon, their assistant, anesthesia, pre-op nurse who checks you in, circulating nurse in the OR, recovery room; have your spouse or whoever might be "tending" you in the first night after surgery be prepared to mention it to floor nurses as well. You and your surgeon should discuss beforehand and come to an agreement just when he'll transfuse you (just how far your red count will have to drop, what other measures must be employed first, before you'll agree to it). If a blanket permission to transfuse is in your operative permit, be sure to add your stipulations to the permit and have you and your doctor or the witness both initial the addendum. If you have a spouse or other who will be standing by for you, be sure to include them in this discussion, as they may be the ones to advocate for your desires if you are still under anesthesia or too groggy to make a sound judgment.

My mother said that when she had surgery, the preop room was so cold she nearly froze to death. Why do they go out of their way to make you miserable?

Many women have questioned getting colder on their way to the OR or waking up in Recovery shivering. This is actually normal and even desirable. No, not to make you fear things worse, although that certainly happens if you are not expecting it and let it add to your panic.

In fact, you are deliberately chilled down as you go into surgery and even more so during surgery. This lowering of your body temperature helps slow your metabolism down, causing less bleeding, making smaller doses of drugs go further, and generally making the whole procedure less stressful on your body.

Once you reach Recovery, you will be bundled up in warmed blankets, given warmed IV fluids and generally helped to return to your normal body temp again. By the time you get to your room, you should start gradually kicking those blankets off and icewater sips will become very welcome as you try to moisten your dehydrated mouth and body back up (getting oxygen and air is very dehydrating, not to mention the fact that when you aren't conscious, you don't swallow and keep your mouth moistened—also a good reason for doing a super job of brushing your teeth pre-op).

So when you notice that you are getting cold, don't worry and don't fight it. If anything, try to embrace it with a calming mind and a positive vision of a successful surgery and smooth recovery to a new healthier, pain-free you.

What is it like when you are under general anesthesia?

It's not. Like anything, that is—it's like it's not there, that part of time. You simply live on from one moment to the next, and it's only the mangled context that tells you that things have gone on without you.

I had Versed (the amnesia drug) as a pre-op, and while it did help keep me mellow, it never did make me oblivious and I remember a lot of what went on getting settled in the operating room before I was given anesthesia (I recognized the circulating OR nurse's voice through party noises a week and a half later, not to mention remembering talking with her and the anesthesiologist). I respond atypically to drugs, though, so don't go by my experience. Actually, even though its effect was limited, it was just fine and left me with enough wits about me to get myself into a very relaxed, accepting, positive frame of mind (I am very into positive imaging) just as the anesthesiologist said he was ready to start my anesthesia.

And the next thing I know, the very next instant later, I was skunching from the stretcher over onto my bed after surgery. That's it: nothing at all in between, including any sense that time had passed. And once I was that awake, I was drowsy but fully lucid.

And that is how general anesthesia typically feels.

If you have your procedure under a spinal, you may, depending on how you and your surgeon feel about it, be sedated but semi-awake.

I actually wanted to do this (I'm not especially squeamish) but my surgeon said that my uterus was so huge that in order to get it out through a reasonable-sized incision, he needed me fully relaxed, not trying to look around and ask questions (we only met in referral for this surgery, but it didn't take him long to figure me out *grin*). As it turned out, it's probably a good thing, because I swear that in the first few days after surgery, I could see boot tread marks on either side of my incision where someone braced themselves to pull that mess outa there!

I think that everyone has the pre-op fear that they will wake up during surgery. Rest assured that your anesthesiologist is at your head through the entire operation with nothing to do but monitor your anesthesia and how you are doing. "Anesthesia" is actually a group of drugs, and the person administering it is frequently giving you a bit of this and a bit of that to keep you at just the right level of "out" while being as gentle as possible on your system and making for as quick as possible an "awakening" once the surgery is over. Waking up just doesn't happen. While you may remember some of Recovery Room, you aren't around during anesthesia. You aren't.

What are these "pain pumps" I hear about? Do I need one? Will that keep me pain-free?

A "pain pump" is an IV that is administered by a special pump, a blocky machine that's mounted on the pole that holds the bag of IV fluid. It adds a pre-set amount of pain-relieving medication to the general fluid flowing into you when you press a button. In other words, it allows you to control when and how often you get a little boost of pain med. The pump also has a pre-set maximum, so it's not possible to overdose yourself. Pumps generally get favorable reviews from patients because they appreciate that sense of control it gives them.

They are generally set up to dispense one of two different drugs: morphine or demerol. If you are nauseated and are getting demerol, consider that as a potential culprit. If you break out in itches (or find yourself rubbing your nose a lot) you are most likely sensitive to the morphine. Don't hesitate a nanosecond to complain to your nurse and ask that your doctor be notified, whatever the time of day or night, if you feel you are reacting badly to the med or it's not giving you adequate pain relief. There are too many medication choices, so there is no reason to have to put up with unreasonable discomfort.

On the other hand, keep in mind that there are costs to medication. You really need to drink, deep breathe, move your legs and your bowels. Narcotics act against all those. So you can't expect to be totally unconscious and oblivious and 100% discomfort free from your meds.

A good level of comfort in the hospital period is being able to move with caution and discomfort, but not cry-out pain, and you should be fairly comfortable when you are well-positioned and not moving in bed. I've read about some pretty sad events where patients were led to believe they would be pain-free after a surgery, and of course they weren't, and their fear and hysteria made the whole thing quite out of control. Tolerable is the goal, and the word should be discomfort, not pain.

I'm so scared! I'm confused, I'm second-guessing myself. I want to change my mind every five minutes! Please tell me that these emotions are normal.

Emotions are so normal at this time that I'd really worry about someone who didn't feel like a mouse dropped into a sack of hungry cats when contemplating their hyst. This is a major life stage, regardless of our age, on top of a rightly-serious surgery. How could that not unhinge us?

I was so discombobulated by the whole idea that it took me 5 years to admit that I needed the surgery, and those 5 years were no picnic (call me a slow learner). My surgery turned out so much easier and more doable than I had convinced myself it would be, my recovery has been great, and my health so much improved that I have real trouble these days believing I could be such a dodo as to have delayed so long.

There's no rational answer for the pre-op panic, though, because rational isn't what it's about. I suggest sharing it with someone who can be sympathetic but not try to "fix" it for you. Admit what you are doing while indulging in it (do that crying—it's an important part of the coming-to-acceptance part), and trying to use the frenzy part as productively as possible. Many of us joke about alphabetizing the contents of the refrigerator while waiting for our surgical date to finally arrive, but the nesting frenzy is real and you might as well use it to bank housekeeping against recovery, when you will be letting things slide (oh yes you will or you'll be hearing from me about it, missy!). If your state of health permits, this is a good time for walking and exercise—you can use the endorphins as well as the break from your brain, and the stamina you gain will stand you in good stead in recovery.

So just try to go easy on yourself, and accept that this is what the waiting does to you. It does to us all. And yes, if you can focus ahead, think a year down the road to wearing white pants with no fear. There, my friend, is an image to hang onto.

All of this confuses me—if I think positive I'll be fine? Sounds like Pollyanna—or maybe I'm just too cynical.

It seems that a significant part of the "positive attitude" thing is not a Pollyanna rosiness but rather the sense of control of the situation that comes with having as good a grasp as possible of the physiology and pathology underlying your candidacy for a hyst, the available treatment options for that pathology and how they relate to your own situation, and the sense, arrived at after studying the above and trying out various solutions (whether physically or simply exploring them conceptually), that for your own situation the hyst is the best remaining treatment option.

Once you are able to commit wholeheartedly to the hyst as your best option, then you are able to take in stride the stresses, the inevitable failure of the surgery to leave you in "as new" condition, and the possible realization of any negative outcomes that are simply "risks" before the surgery.

Most typically, the women who suffer really crippling regrets later are those who did not successfully achieve this personal sense that this is the only remaining treatment option for regaining some degree of relief from their pathology. For the rest of us, even though we all experience some lingering negative effects (even if only some nerve weirdness around the incision, but up to and including life- threatening complications), we are able to view that balance and remember that at the time, these risks were preferable to the risks of continuing as we were. It's very important to understand, deeply understand, that we are not healthy people and we cannot be made so, ever again. What is within our reach is improvement, not total restoration.

When that commitment is made, then we can embrace the surgery as a positive action we are taking, and throw ourselves wholeheartedly into making it as successful as possible. A body that seeks aid suffers the physical stresses of surgery and recovers more promptly and with fewer complications than one that fights the process. This is demonstrated by research. If you willingly embrace anesthesia, calmly and with positive outlook, you will require fewer drugs and your body will be less stressed and bounce back more strongly and rapidly than if you go under fighting the process in fear. If you get out of bed as soon as possible after surgery, breathe deeply, stand up straight and walk knowing that every step you take moves you towards health and strength, you will have fewer complications and recover more rapidly. If you balance needed rest with the challenges of increasing activity in your recovery, your healing will be stronger and more durable than if you only rest when you collapse recovering from over-exuberance and stress. These are all things that are known about healing, and all things that bring a positive attitude out of the Pollyanna realm and into the hard cold scientific light of Things You Can Do That Really Make A Difference.

The short list, then, becomes:

  1. Educate yourself fully about your pathology and about the hyst, both before and after surgery
  2. Try all lesser treatments until you can accept that only this extreme and irrevocable treatment offers you relief from a situation you can confidently declare intolerable
  3. Research and actively embrace positive measures for a healthy hyst experience and recovery

When you have done all of these, then you have prepared yourself for an experience that should not leave you crippled for the rest of your life with regrets.

Friday, September 24, 2004

Questions for your pre-op appointment

This is a list of basic questions to ask your doctor at pre-op appointments. It may not cover absolutely everything that might be pertinent to your surgery, but it should help you cover the important points. A good way to use this list would be to copy the page, paste it into a word-editing document, add extra lines between the questions, and print it out. Then you can take it to your appointment and write the answers down (or take a mini-recorder and tape them) so you can review them at home, when you have time to think things over. Be sure to jot down any other questions you may think of while reading this, so you remember to ask them, too.

  1. What is the full name of my surgery? (Write this down!) What exactly will you remove: uterus? ovary/ies? cervix?
  2. Will you be combining this with any other procedures? Appendix removal? Bladder repair? Rectocele? Tummy tuck?
  3. How will you remove the organs and where will the incision be? Abdominal (horizontal "bikini"? vertical?)? vaginal? using a laparoscope?
  4. Which things you remove will be going to the lab for pathology tests and when will I get the results? If my surgery is for suspected cancer, how soon will I begin treatments and what will they be?
  5. Should I donate blood before my surgery? If so, when? If not, what if I need a transfusion? If I don’t need a transfusion, is there something else I should do afterwards to build my blood back up?
  6. Right now I am taking (list all of your vitamins, herbs, special dietary practices as well as prescription medications, birth control pills, hrt; if in doubt, list it!). Should I stop them before surgery? If so, when? And when can I go back to taking them after my surgery?
  7. Will I have any special surgical preparation: enema? laxative? douche? Will I be shaved? If so, where and by whom? May I do it myself instead?
  8. What if I have my period when I’m supposed to have my surgery?
  9. I am planning to have my [whatever] pierced or get a tattoo. If I have it done before, how long must it have to heal before the surgery is scheduled? How soon may I have it done afterwards?
  10. May I leave my finger- or toenail-polish and/or artificial nails on when I go to the OR? May I leave my wedding ring on?
  11. What kind of anesthesia will I have? What if I prefer a different kind? Will I meet with my anesthetist before surgery?
  12. How long will my surgery take? Will you report to my family afterwards, while I am still in the Recovery Room? How long will I be in Recovery before I am taken to my room?
  13. How will my pain be managed and what will you be giving me? Will I receive it in the Recovery Room? Do I have to ask before I can have it, or will it be given to me? How often may I repeat it? What if that doesn’t work—will I have another option? How will I get that second option?
  14. What if I become nauseated after surgery? May I have something for this? May I have it before I vomit? in the Recovery Room?
  15. How long will I be on bed rest? When will I get up? How often should I get up?
  16. Will I have a catheter into my bladder? Will I be awake when it is put in? When will it be taken out?
  17. When can I take a shower? When will I be able to bathe? Use my hot tub?
  18. Will I have vaginal bleeding after my surgery? How much and how long?
  19. Will I have on special stockings or pneumatic leggings to prevent clots in my legs after surgery? How long will I have to wear them? Will I be receiving any medication for this purpose? Which one, and how long?
  20. Will I be hooked up with/using any other equipment or special things after surgery? Tummy binder? Breathing exercise devices?
  21. How long will I have an IV after surgery?
  22. What will I be taking for post-op gas and constipation? How long will I need this? If I'm not prescribed something and develop these problems, what do you recommend I take?
  23. If I am having my ovaries removed, when will I start taking hormones and which ones will I take? What is this choice based on? How can I expect them to make me feel? What if I don’t like the way I feel on the first prescription or think I am having a bad reaction?
  24. If I am not having my ovaries removed, how can I tell if they are or are not working post-op? Will I have hot flashes anyway? If my ovaries don’t work right away, what will I experience? How long will I have to experience menopausal symptoms before I can take something to relieve them?
  25. What things have to happen before I will be discharged from the hospital? How long should I expect to be in for?
  26. When will I see you after I leave the hospital? What if something happens or I have questions about how I'm doing before then?
  27. What pain medication and other medications will I go home with? If I run out of pain medication, how do I get more?
  28. What kind of problems should I be watching for at home?
  29. Do I need to have someone stay with me at home after I am released from the hospital? for how long? Should I arrange for another caregiver or board out my kids and/or pets?
  30. What activity restrictions will I have at home? Stairs? Bathing? Driving? Housework including laundry and vacuuming? Lifting how much when? What about my kids or pets—when can I pick them up?
  31. What if I do something and it makes my incision/belly really hurt? Can I hurt myself by doing too much too soon? How will I know?
  32. Will I need to wear a tummy binder or light girdle at home for belly support? If so, for how long?
  33. I am planning to do something special (go to my son’s wedding 2 weeks after surgery—move to a new state a month postop—return to grad school classes of 3 hours a day at about 3 weeks after surgery—take a tropical vacation 2 months after surgery—start paragliding lessons—whatever) in the first 6 months after surgery: is this going to be okay? Should I reschedule it or my surgery to accommodate this plan?
  34. When can I return to my job? (Note: be sure that your doctor knows the exact nature of your work! A work-at-home web designer does not have the same physical demands as a warehouse worker toting hundred-pound sacks of cement mix working a twelve-hour shift.) If I return to work and find it too strenuous, will you authorize an extended leave or a limited return to work?
  35. When may I have sexual intercourse (penetration)? May I engage in other forms of sexual activity (including orgasm) before that time? If so, when?
  36. When may I resume exercising? I normally do for exercise (walk, run, swim, step aerobics, ride horseback, lift weights, bike)—is there any part of that activity I should avoid at first? When and how can I work on regaining tone in my belly? Will you refer me to physical therapy after surgery so that I can work with them on preventing internal scarring and regaining physical conditioning safely (check to be sure your insurance will cover this, but many will if your doctor orders it)? When can I do Kegels again, and should I?
  37. If I have more questions after this appointment, how can I get them answered: email? fax?

Tuesday, September 21, 2004

Hysterectomy Terms and Abbreviations

(Please note that there is considerable leeway for interpretation in many of these terms, so definitely make sure that you and your health care professionals are using these terms in the exact same way.)

First, the single letters, then how to assemble them:
T: total (as in, taking the entirety of something)
S: subtotal (as in, taking part of a whole system or part of an organ)
A: abdominal (may also stand for "assisted" when used with "laparoscope")
V: vaginal
U: unilateral (one of two, or one of two sides)
B: bilateral (both sides, or both of two)
L: laparoscope or procedure performed using a laparascope
H: hysterectomy
O: oophorectomy (removal of ovary)
S: salpingectomy (removal of fallopian tube(s)
Now, the acronyms:
TAH: Total Abdominal Hysterectomy (removal of uterus and cervix through an abdominal incision)
SAH: Subtotal Abdominal Hysterectomy, Supracervical Abdominal Hysterectomy, Partial Hysterectomy (removal of uterus, leaving cervix, through an abdominal incision)
TAH-BSO: Total Abdominal Hysterectomy with Bilateral Salpingo-Oophorectomy (removal of uterus, cervix, both ovaries, both tubes, through an abdominal incision)
TVH: Total Vaginal Hysterectomy (removal of uterus and cervix through the vagina)
LAVH: Laparoscopic-Assisted Vaginal Hysterectomy (removal of removal of uterus and cervix through the vagina with the assist of a laparoscope to see into the abdominal cavity through a small incision, usually in or near the belly button)
Surgery names that don't really get abbreviated:
Unilateral Salpingo-Oophorectomy: removal of one tube and ovary
Bilateral Salpingo-Oophorectomy: removal of both tubes and ovaries
Radical Hysterectomy: removal of the uterus, upper vagina, and parametrium (pelvic floor tissues); often includes removal of ovaries and tubes as well as a general exploration of the abdominal cavity and staging of cancer using lymph nodes
Excision: cutting away of specific types of tissue without removal of an organ, most commonly referred to in surgeries to remove endometriosis from organs within the abdominal cavity
Burch or Marshall-Marchetti-Krantz (MMMK): two specific procedures used to re-suspend the urinary bladder in treatment of incontinence; this surgery is sometimes performed at the same time as a hyst (more)
Medical conditions that may result in or be associated with a hyst:
Fibroids: benign smooth muscle tumors of the uterus, believed to be nourished by estrogens and that typcially resolve if the hormonal decline of menopause is not supplemented; generally not surgically removed unless causing symptoms in other body systems
Uterine Leiomyomata: fancier name for fibroids
Adenomyosis: abnormal development of the endometrial lining of the uterus, extending into the fibrous and muscular layers; most often seen in women who have been pregnant
Endometriosis: endometrial tissue (the lining of the uterus that nourishes a fetus) that has escaped the uterus and attached to other portions of the body, typically within the abdominal cavity, and continues to cycle and possibly produce hormones
Cystocele: a herniation (gap, typically a tear where the tissue has been weakened, often from childbirth) of the vaginal wall through which the urinary bladder protrudes
Rectocele: a herniation (see above) of the vaginal wall through which the rectum protrudes
Prolapse: failure of the supporting ligaments that hold the uterus in place, such that the cervix and uterus protrude partially or completely into the vagina or even, in extreme cases, outside the vagina

Introduction and explanation

This site grew out of my ongoing awareness that it's hard for women to find good, accurate, unbiased information on the internet when they are having a hysterectomy. While I moderate an active yahoo group on the topic, the content of that group is not exactly transparent to those who don't want to get their information in a discussion format. There are lots of sites out there if you do a search for "hysterectomy" but it's hard to sort out those selling services from those trying to scare you away from the whole idea from those who are simply poorly informed.

For many women, a hyst is their first major surgery. They may not know much about their female anatomy beyond a long-ago high school health class of the "now you are becoming a woman" platitudinous sort. Their only hyst information may come from what their busy doctor's office staff can toss out on the fly plus the content of so-called educational pamphlets that are so bland and non-committal that they spend four pages essentially telling you "ask your doctor for anything specific." However much they want to be informed consumers of health care, they just don't know where to begin. Congratulations: you've made the first good step by coming here.

What I plan to publish here is, first, a whole lot of background information on the sorts of things women ask most on HysterList: what do all the terms mean? what do I need to ask my doctor? how do I get ready for my surgery? will it hurt terribly? how long will it be, really, before I feel good again? and is it true that I'll get fat/never desire sex again/lose all my maternal feelings? I'll be skipping around between pre- and post-op topics and it'll take me awhile to pull things together, so try to be patient as I assemble this information. There's a lot, so it will take some time. You can always, though, get a full overview of the site through our table of contents, and that's a handy tool to navigate through the site.

What I don't plan to publish here is advice. I can't—and won't—tell you what to do. Whether or not a hyst is the best approach for you is not something I can address. I don't think a hyst is inherently evil, an evil plot on the part of the medical establishment (whoever that may be), or a miracle cure-all. We'll talk more later about making the decision to have a hyst, but I want you to know that my goal here is purely information. It's up to you to make whatever use of it seems right to you.

Please don't email me and ask me to solve your problems. If you want to discuss specific hyst-related issues with other women who have had a hyst or are preparing for a hyst, you are more than welcome to join our yahoo list. I do not have the time to conduct a private counseling service on the side. You are welcome, however, to email me with suggested topics that you would like to see me discuss here on this blog. My address is in the sidebar.

One last note: why should you believe me? Mmm, you shouldn't, necessarily. I've spent a few years now in the hyst community as well as experiencing a hyst myself, so I have a fairly clear idea of the things women are thinking about on the topic. I've done a lot of research and I continue to do a lot of research into the physiology involved. I work very hard at being accurate. But you should never take any single source as authoritative. Read what I have to say and then check it out for yourself. This is just a starting point, but the endpoint is a decision you feel comfortable with. And you deserve the best, so don't short yourself in the research department.