My TAH Top 5's
One year ago I had my TAH for endometriosis pain, recurrent ovarian cysts that would rupture and hurt badly, rapidly enlarging fibroids affecting bladder and bowel function and pressing on an artery, and bleeding that was becoming debilitating.
It took a couple of years to make the decision, and in that period of time I read a lot of books, looked at a lot of websites, investigated alternative treatments, and went through several GYNs. Finally the symptoms became bad enough to tip the scale, I found a GYN I trusted to do the surgery well and take me seriously as a person and a patient, and I scheduled the surgery.
Hystersisters was very important to me as I struggled through the period of making the decision (that was the hardest period for me, not the weeks of waiting for surgery after it was scheduled). It was also a lifeline during those pre-op weeks of anxiety and questions. By the time I had the surgery I was so well informed and supported by hearing others' stories that I felt well ahead of the game.
With a year of experience behind me, I have some Top Five lists that capture the important parts of my experience and that I offer to those of you who are now on this journey. I hope that it is of some use, and I wish you the best possible experience in your healing process.
Top Five Best Things I Did
1. Not rush into the decision, and really educate myself about the choices, process, and what to expect.
2. Find Hystersisters. Read the Hystersisters guide. Read lots of Hystersisters stories online.
3. Check into having regional instead of general anesthesia (epidural), then push the GYN and anesthesiologist to let me try it. For me and my conditions, I think it made all the difference in my experience, sense of control, pain control, and inital recovery.
4. Get a surgery-preparation relaxation CD and practice with it for a week or two before surgery. I used "Prepare for Surgery, Heal Faster". There are other examples. I took my walkman into surgery. I was a real curiosity to people, but it helped me enormously, as it was already my security blanket from the weeks of practice. I used it a lot while in the hospital recovering. It helped me out of some high-pain times while waiting for a new round of pain relievers to kick in. And I still use it for relaxation and preparing to sleep when insomnia or other kind of pain (not hyster) keep me from sleeping.
5. Believe people who told me that it would take months, if not a year, to really feel like myself. Smile but mentally roll my eyes at stories of people who were playing tennis two week later (I exaggerate, but you know, or will know, the kinds of stories I mean). The woman really helped me who told me that a few months after her surgery she would sometimes still go out to her car from work and sit and cry because she was so awfully tired and still sore. She told me this when I was a few months after surgery and feeling depressed that I wasn't all better yet. I was so tired, and surprisingly sore. I thought it would never get better or that something was wrong with me. She made me feel ok, and eventually I was ok.
Top Five Things I Wish I Had Done
1. Buy more support panties. Once I discovered them I lived in them for at least 6 months. They weren't easy for me to find (but I don't live in a shopping mecca). I finally got a supply by ordering from Penney's online.
2. Walk more at all stages of recovery. I did walk, I did what I was told, but I could have done more and it would have helped more. It's really hard to do when you're so tired, feel bad, and don't have enough energy to do two things (will it be make a sandwich or get the mail--certainly not both). But I wish I had walked more.
3. Discover and invest sooner in a robot vacuum. Mine is the roomba. Once I got it, I no longer struggled so much with how the house wasn't like I wanted it but it hurt too much to vacuum and was such a hassle to get other people to do it even though they were at least theoretically willing. People have to do so much for you for a while that you hate piling one more thing to ask for. Roomba is my dear friend now, but I sure wish I had him back then. I could have paid for him with the stuff I bought but didn't need.
4. Try soy products sooner. The self-help tactics for menopause are legion. Everyone has to figure out for themselves what works. There are no magic pills. Usually it's a combination of a lot of different tricks, tips, and products that provide help. Because of endometriosis, I had to wait a while after surgery to go on estrogen, and even now I like to keep my estrogen as low as possible to make me comfortable. What helped me through the period without hormones, and helps me now keep the hormone treatment low (I've tested these things by going off them and seeing the difference) are an intense soy food bar or shake (I use the revival soy brand) because I won't drink enough soy milk to make a difference, and taking the 'cocktail' of vitamins for hot flashes that you see recommended everywhere. Once I got all this going and had been on it a couple of months I started seeing a big difference. I wish I had started sooner.
5. Get an inexpensive cane for walking support for the first few weeks. I used my reacher (a great thing that I used a lot after surgery for its reaching function, and still use occasionally) as a sort of cane to support me as a crept along. It worked ok, as I'm short and small, but it's not really meant as a support and a cane or walking stick would have been better and safer.
Top Five Things I Didn't Need
1. As many pairs of granny panties--once I figured out that support panties helped so much I didn't want anything else for months. I wore two pair of the granny panties a couple of times, gave the rest away, and lived in support panties forever. They really helped a lot and made me secure.
2. The swelly belly band was not useful for me. The support panties did the job I hoped the band would do, and having a band of cold draped over my tummy was not pleasant even with hot flashes. The chillow pillow was moderately helpful.
3. An expensive rope-cord tucked under the mattress pull-up device for help sitting up in bed. I used it and it helped for about a week. Then I had figured out the roll over, grip a chair moves that help you get up and that was easier than the expensive pull-up system. The better thing would have been to learn and practice the no-tummy-muscles moves for getting out of bed before surgery. By the way, they didn't teach me this in the hospital, I had to figure it out myself.
4. So much stuff in the bag I took to the hospital. I wasn't up to reading, putting on makeup, writing thank you cards, listening to lots of books on tape, whatever. I also didn't need all my special pillows. Hospital pillows handled whatever my needs were. All I really needed was my medications, clean underwear and nightgown and robe, and my walkman and relaxation tape.
But after I got home I used books on tape with my walkman a lot. They helped me relax, be less restless, rest more, distract me from pain, kept me company, and gave me lots of good moments of entertainment and laughing when I needed them. I wish I had bought a lot more of them before surgery so I would have a bigger supply--you can probably get them out of the library unless you live in a small place like I do.
And I used my little tummy pillow to pieces. I still sleep with it at night because it's comforting and eases hips or other joints while sleeping. It's just a small, soft throw pillow, nothing special. I used a body pillow, a knee wedge, and a sit-up back support kind of pillow for several weeks after surgery. They were helpful, nice to have, but I could have done without them. Just a lot of regular pillows and a tummy pillow will do the job. If I had to pick between all the specialty pillows and the robot vac, I'd definitely get the robot vac.
5. As many big clothes for the dreaded swelly belly. I had swelly belly, and it lasted many months. The three pair of cotton-linen drawstring pants (look better than sweatpants when you're leaving the house and want to look sort of normal) I bought were perfect, the black ones could be dressed up with a jacket for a more professional or dressy look, and gave me wardrobe confidence. Because they are drawstring and I bought them just 1 size too big, I still wear them. But I had a pile of pajamas, nightshirts, underpants, stretchy pants, and so forth that I didn't use because they were just too big. Swelly belly probably changed my size 4 stomach to a 6-8 at most. Yes, I sort of looked pregnant, but not 9 months pregnant as I had feared.
Clothes weren't as much a problem as I feared. I didn't wear jeans for quite a while, but once I was strong enough to go out for more than a quick trip to the drugstore, my drawstring pants and a couple of pair of my regular pants that were of softer material, a bit looser to start with, and that could be left partly undone under a top, plus a long knit skirt with a soft, stretchy wide elastic band I could settle just about anywhere on my torso that felt right, were all I needed and got me through the few months before I was up to more of my regular wardrobe.
A bonus tip
One more thing I learned during recovery was a trick that has become a good habit for me even now: adding juice to a big glass of water several times a day. It helps keep you off soft drinks and makes it much easier to drink all that water that really does help with constipation, UTIs, and generally how you feel. I get low-cal cranberry, apple, or grape juices and fill up a glass that's already 2/3 full of ice and water.
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