Thanks for all the great support this from web site and many hyster sisters whose emails and postings helped me in my decisionmaking process and through my surgery and recovery! I had a hysterectomy in May of 2001 (supracervical laparascopic, kept ovaries) at age 42. I'm reporting back now after one year to share my success story which I hope will help others making these hard decisions.
First off, after lots of agonizing about whether to do it, I am incredibly happy with the results of my hysterectomy. I'm another one of those who can easily say this was a huge improvement in my life and one of the best decisions I've ever made -- probably the only thing I regret is not doing it years ago. I certainly don't think it is right for everyone, though, and I made the decision only after carefully considering many horror stories and my individual circumstances and after searching far and wide for medical expertise and other solutions.
Here's the short version of my problems: I had growing fibroids causing a number of disabling symptoms, on top of a long history of severe menstrual pain (including cramps, fainting, vomiting, intestinal problems). From age 12 to early 20s, I was unable to get help for these problems (doctors said it was all in my head or worse). This was probably due partly to endometriosis (surgery found some but not dramatic evidence). Thanks to women's health advocates, I discovered ibuprofin and that helped for about 5 years, but gradually became less effective. For about a dozen years I took various kinds of oral contraceptives, and suffered severe migraines as a side effect. I went off the medication for a while, but pain gradually returned and got worse. In my late 20s, I developed fibroids, but as far as I could tell these were asymptomatic. By my late 30s, the fibroids grew somewhat and probably contributed to my pain. For the last two years, I took continuous oral contraceptives (no break, no "periods") to try to control the symptoms, which worked for a while but then the symptoms gradually got worse. The growing fibroids were what triggered my doctors to raise the hysterectomy question -- though the pain was what I cared about. The fibroids were in the "14 week" range -- not beyond what many women live with, but I had a fair amount of pressure on my bladder and abdominal pain (but I'd had pain for years so who knows).
Here's the short version of my surgery: I found one of the few gyn surgeons who specialize in laparascopic hysterectomies for fibroids, though it meant I had to travel out of state for the surgery. Thankfully I had generous friends in the area who put me and dh up in their house for a month! And thankfully I had non-HMO insurance that paid 80% of non-network health care and I could afford the rest (some of the best money I've ever spent). With the lap, I had no vaginal surgery -- the surgeon takes the fibroids and uterus out in pieces through a 1-inch incision in addition to a couple of smaller abdominal incisions. That meant a much faster and easier recovery. But don't be fooled by the "lap" -- like many of you said, it is still nowhere near as easy as some other laparascopic procedures. I had a laparascopic appendectomy two years before that (I have a hunch these abdominal problems are a package deal) and it was a piece of cake in comparison (I was bicycling a week later with that).
Here's a longish version of my recovery: I was in the hospital for "23 hours" (that's insurance speak for we're only covering it as day surgery) i.e. really a day and a half. No problems with anesthesia or surgery (except I always freak out from IVs and getting it inserted was lots of trouble). For the first 24 hours post-surgery the pain from the bloating (gas used to inflate abdomen for lap) was pretty bad though the hystersisters' book helped warn me about this. Then I spent four days being a princess vegetating in bed while others doted on me, taking ibuprofin and an occasional narcotic for pain. Meanwhile, I did plenty of socializing with visitors and read all the Harry Potter books (I figured kids books would be best while under painkillers), so it certainly was not a miserable time. Then I started taking slllloooowww walks and doing little bits of work at home by the end of the first week. The second week I did a couple of hours of computer work at home each day and was up and around the house -- but still had several friends and family taking care of my every need and had complete control of my schedule so that I could rest whenever I wanted. If I'd had to do housework or take care of kids, I certainly wouldn't have had any energy for anything else. I did a few short car trips (not driving myself) but it was definitely hard to be out and about and I'd invariably get teary from the pain of just having to move unexpectedly and from climbing stairs. At 2 1/2 weeks post-op I took a 4 hour trip to visit my parents for the weekend (my dad's 80th birthday) and I was quite able to travel and socialize (though I still needed to take a couple hours for napping each day). I went for walks each day, but at about the pace of a 3-year-old.
At 3 weeks, I drove myself on an 8-hr trip that included moving lots of boxes of books (ok I definitely shouldn't have done that). I was on my own at that point, since DH was off to Europe for work and I had to get back to my own work. That was hard. Although I just worked for a few hours each day, it was VERY difficult to do that on top of housework, and simply driving to work, walking from the parking lot to my office, and from my office to and from the bathroom & mail rooms etc felt like a full day's work. Even though each day I felt stronger, I'd be reduced to tears because it was just too much to do it all. At 4 weeks, I again took a big weekend trip for fun, which went well, though I was still exhausted and groggy and my belly really hurt when I tried to dance (definitely shouldn't have done that). At 5 1/2 weeks post-op, I travelled to Europe to join DH for a much-needed vacation. The 7 hour plane ride was ok, but I did need to be extra careful about planning frequent bathroom stops and it was tiring. I was able to spend several long days running around Paris where DH has work & family -- exhausting, yes, and I couldn't quite keep up with him, but mostly it went ok. By 6 1/2 weeks post-op, I was well enough to take a pretty strenuous four-day bicycle tour in Northern Ireland. By this point, I felt nearly back to normal -- and in fact, though I was still more tired I'd usually be and didn't go as far or fast as DH, I did feel in many ways better than I had on pre-surgery bike rides. It was fabulous to be free of the nearly constant abdominal pain and nausea that had come to be a normal part of any exercise for me! The post surgery pain was minor compared to that. But I don't think any of this would have been possible without doing the surgery laparascopically. Also, I'm in good shape and got regular exercise pre-surgery. AND I had the great fortune to be able to take an extended sabbatical leave from my job over the summer and fall following my surgery, so that other than a few weeks of work, I had a pretty leisurely situation where I took regular exercise classes to gradually build back my strength and where I had complete control of my activities.
Still, it wasn't until 4 months post-op that I felt that I felt my belly was healed enough to do everything I could pre-op (that is, I could finally help lift an 80-pound kayak up onto the car roof). And it wasn't until maybe 5 or 6 months post-op that my swelly belly settled back down to normal (I think I gained weight post - op from not much exercise and from too much vacation).
Life after hysterectomy: I have not felt better since I was 12 years old (now I'm 43). No abdominal pain! No intestinal problems! No bleeding! No constant nausea! No constant colds and bathroom trips! I can sleep through the night and exercise without interruption from pain! No constant management of medications and their endless side effects! I can travel and run around without constantly worrying whether I have enough ibuprofin and bcps and enough tampons, pads at the right time and the right place to avoid disaster! Sex is great! AND for some very strange but wonderful reason, my hormones feel more balanced than they have in decades -- I'm not counting on this one to last, but really, after having hot flashes and terrible pms since my 20s, now that I'm heading to mid-forties and uterus-free it is the first time I have ever felt my hormones are working right. I did keep my ovaries. I do feel some pms symptoms -- monthly breast soreness and some weepiness, but these symptoms are FAR less than I had for decades pre-op. Some of the problem may have been all the hormones (bcps) I was taking to manage cramps, but even in my teens and early twenties before I took these meds my hormonal swings were terrible. It seems too good to be true, but getting through the hysterectomy experience has taught me a lot about getting the support I'll need if I have another bout of hormonal problems as menopause gets closer. So, I don't miss my uterus one bit at this point. I feel incredibly blessed to have this newly good health, a wonderful husband -- in fact we just got married this year. Neither my husband nor I have been particularly attached to the loss of the possibility of pregnancy, and in fact we are excited to be going forward with the process of adopting a child.
What I learned that might be useful:
1) Be persistent, demanding and skeptical of experts in your search for medical answers. Enlist friends or family to support you in medical advocacy to help you talk to doctors when you are feeling vulnerable. Get many medical opinions. I went to 5 different doctors to decide on the hysterectomy. Trust your own sense of your body. You deserve to feel good. Right to the end I was constantly wondering whether I was making up my pain and whether I should just learn to cope better. I realize now how much social and medical pressure I felt to deny and minimize my symptoms (just a little menstrual pain, I'm just oversensitive and whiny).
2) A laparascopic hysterectomy can really speed up recovery (though should be done by experienced surgeon and not appropriate for every situation). I didn't hear about this option from many sources -- because it is not as widely available -- but it is worth seeking out.
3) Pay attention to the hyster sisters' advice for post-op princesses to take it easy -- even though my recovery was smooth and fast I really needed to be waited on for more than the 2 1/2 week's I'd arranged.
4) I'd also suggest trying to recognize your princess status for the month or so pre-op as much as possible. As many hystersisters said, the waiting was the hardest time for me. I was in a lot of pain, and mostly I was extremely nervous and upset about the surgery. All the decisions and preparations were emotionally & physically overwhelming, along with rushing to finish up projects at work and home so that I could take a month off. This was the time I really needed to feel it was ok to just take a break. I backed out of some important commitments and asked my dh to cancel a business trip just for the emotional support and I felt really guilty about it. In retrospect, I needed it and I'd like to say to others you deserve extra attention and time free of other demands to emotionally and physically get ready. Take time to exercise, eat well, sleep well and seek out lots and lots and lots of emotional support.
5) This web site was great; Hystersisters book was helpful, and I had fun with the crown!
6) Why choose hysterectomy and not medication, UAE, myomectomy? There's no one good answer for everyone -- you have to figure this out for yourself based on your very individual situation and in the end a leap of faith. I tried so many different combinations and types of medication, many of which worked -- somewhat -- for a while. I was tempted to continued this strategy, especially because of my fear of surgery. But deep down I knew it was taking a huge toll on my daily life to constantly be thinking about which pills to take when, constantly adjusting the dosage or brand as my reaction changed, constantly wondering about side effects and taking other meds to control these producing yet more side effects, and still not being free of pain. And constantly trying some medication that didn't work well, and waiting then till the next month to adjust it -- so much down time. I just felt I'd come to the end of my rope and it was worth trying something different that might be a more final and complete answer. And that is also why I rejected UAE and myomectomy. My problems were not just fibroids -- I knew my uterus had been the source of terrible constant pain since I was 12. If I was going to go through the trauma of surgery I wanted to at least have a reasonable chance of putting my uterine pain behind me once and for all. Though I did read about the possible bad health effects of hysterectomy (aside from risks of surgery) I decided that the constant stress of living in pain and unknown and known risks of living on so many drugs for years was likely to have an even greater harmful effect on my overall health.
7) A specific note for those trying medication as an alternative: Beware that changing brands can make a huge difference (even when the chemicals are the same the processing can have effects). I went on progesterone-only birth control pills for 2 years because of migraines from combination (estrogen/progesterone) pills. The progesterone-only pills include the brand names of Micronor and Ovrette, and are sometimes called mini-pills. These work well for some women. But I had HORRIBLE side effects. And I had a terrible time diagnosing the problem since my medical providers just treated these the same as any other birth control pill that had not had bad side effects for me. The side effects went away instantly when I stopped taking the progesterone-only pill. These included severe heavy menstrual bleeding, constant abdominal pain, nausea, extreme fatigue, depression, frequent urination (getting up 5 times a night to pee), skin problems, severe ovarian cysts when I started taking the pills, diarrhea, difficulty sleeping, constant colds and other infections. Needless to say, this was a tremendous interference with my work and personal life. If you are taking any new meds and notice a change in your health --- you should very seriously consider the possibility it may be from the medication even if your medical provider doesn't seem to think so. Ask more questions and do more research. When I finally found some experts I learned that other women have experienced these particular problems from progesterone.
8) Surgery -- get records from any past surgeries and think about what you needed and what didn't work well and talk with your surgeon, anesthesiologist, and nurses ahead of time about these problems. Immediately after a previous surgery, I had severe anxiety -- couldn't sleep at all, constantly fidgeting, couldn't rest. Finally figured out this was the painkiller they gave me, even though they insisted it would sedate me. This time I made sure everyone knew not to give me this drug, and asked anesthesiologists about alternatives. They followed my instructions and recovery was much much better.
Also from a previous short surgery, I woke up with my arms "asleep" (full of pins and needles) but unable to move them because of IVs and sedation -- it made me really freaked out. The anesthesiologist this time said she'd make a special effort to avoid this (I think they can move you around a bit during long surgeries and make sure your nerves are not pinched). This time I felt fine when I woke up despite being under for 2 1/2 hours.
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