Sheryl’s daVinci Hysterectomy
daVinci Robotic Hysterectomy
Age at Surgery 32
Location: Colorado Springs, Colorado, USA
I am currently 9 weeks out from surgery and feeling great!! My story is long, but detailed, in case you are agonizing over your decision pre-op like I was!!
I have had uncontrolled “breakthrough” bleeding on every brand of oral birth control for about 7-10 years; I’ve been on birth control since my teens for OBSCENELY heavy (soak 4 overnight pads in a few hours) periods and acne. For a while, when I changed brands of birth control, my bleeding would be under control. Then eventually, I’d have a period at the “scheduled” time, and a new one would start 2 days later. It was impossible to plan around, since there was no pattern whatsoever. I have also had a series of abnormal PAPs for around the same time frame; I’d have a scary one, go for colposcopy, have THAT come back ASCUS, have a LEEP, then have a normal PAP, then 6 months later have another abnormal.
I have never been interested in having children through my body. I am grossed out by the concept and I also admit I am too vain. I don’t want to get “fat and saggy” as I finally feel okay with my body after 32 years. I have always been open to fostering or adoption, because I feel there are kids out there thrown away for no reason, kids that deserve a chance. I would also put kids to work – when I was a kid, I had chores and yardwork to do, and I think hard work is good to burn off energy.
During the excessive menstrual bleeding, I would have horrific nightmares of pregnancy and childbirth and wake up terrified. Pregnancy used to be a HUGE scare, so much so that during the week and a half pre-op, once my doctor told me there would be a pregnancy test the day of surgery and that things could not proceed if it were positive, I bought a 4-pack of pregnancy tests and took them every few days to prevent myself from having a total meltdown.
I have moved several times over the past 5 years and have also bounced around between physicians. When I got on insurance through work, I asked my coworkers (all women in their 30’s) for recommendations for OB-GYNs, ideally women, and called the office of a highly recommended one. I didn’t get in to see her for about 5 weeks, finally getting in around October 2015.
I asked about birth control options and told her the history of nothing staving off periods. We talked about Mirena and other IUD’s, and I told her I had considered Mirena, even had an appointment set for one a few years ago, but bailed because having a foreign item inside made me squeamish. We discussed more, like how heavily I was bleeding; she wondered how painful menstruation was for me. I said it bothered me, and she asked if I ever called out sick from work or school, and I said of course not, but that sometimes in the store or the car I’d double over in pain and it would take my breath away. I sort of jokingly said I’d rather be done with all of it and have a hysterectomy; I didn’t expect her to take me seriously, because with all the LEEP and PAP scares, I had said this several times, and every doctor laughed me off and said I was too young and surely I’d want kids eventually.
This doctor actually took me seriously!! I was overjoyed! We went through the proper “hoops” that insurance wanted jumped through; she suspected I had adenomyosis, and did an ultrasound (internal and external) and a uterine biopsy. The ultrasound looked like I probably had adenomyosis or pelvic congestion syndrome. When we met to discuss what it showed, we talked about whether a hysterectomy would FIX these, and discussed how I was usually painful on the left side. We discussed possibly taking out the left ovary in addition to the uterus and cervix (the cervix had to go with all those abnormal PAPs in its history) which she thought seemed reasonable. (It was my idea to take out everything on the left.)
We decided to proceed; my boyfriend and I were closing on a house and the holidays were coming, so we tentatively planned to meet up again after the new year for surgery. I had discussed some of this with my boyfriend all along, and while he was squeamish, he overall supported me being pain-free and being able to plan beach vacations without me feeling bloated and painful. He was sad about the finality of it; we have been together 7 years and he has known all along my thoughts on pregnancy, but was still sad to see it in black and white, no room for negotiation (although surrogacy with egg harvesting is still an option, I told him!) He is also squeamish about blood and had been getting more and more tired of trying to time sex around the 2 days per month I might not be bleeding. Incidentally, I started bleeding 12-23-2015 and was still lightly bleeding the day of surgery, 02-08-16.
I researched TONS at this time and went to my pre-op appointment with 4 pages of questions, 1 copy for my doctor and 1 for me. I have never had any surgery or anesthesia, not so much as a filling, so I was uptight. My doctor and her nurse went over everything in agonizing detail (what position would I be in, what if I woke up intra-op, did I need to shave or did someone do that if necessary) and we scheduled. Boyfriend was more nervous once it was down on paper, and I proceeded to slowly deteriorate mentally; I was a total nervous wreck at work, convinced I would die under anesthesia (so I wrote out power of attorney, discussed my wishes in detail, discussed CPR vs DNR status with my boyfriend, friends, and doctor) and got through it. As I said, it did take 4 pregnancy tests to get me through the week before!! I had also requested and been approved for 2 weeks off work, then additional time on “desk duty” as needed for up to 1 month, so I knew I’d better be feeling good 2 weeks post-op!
I did have to do a GI or bowel prep the day before surgery. Nothing solid after 2 pm, then a yucky OTC drugstore prep. drink, then 2 enemas. Fortunately I had the day off work and asked bf if he wanted to leave the house or stick around and keep me company in the potty. He opted to run errands. I chugged my drink (chilled, with a straw, it wasn’t too bad) and did my enemas; I had wanted to have a bath that night because it would be a month or 2 before I could again, but my bum was so raw from diarrhea that I skipped it.
We didn’t sleep very well, we were both too uptight, so we got to the hospital early; I was supposed to arrive around 9 and we were there at 8. I got checked in though, and bf and I sat in my little curtained waiting/pre-op area talking until around noon. I was naked except my little gown and had an IV catheter placed in my right hand; I also took the urine pregnancy test and was not pregnant/good to proceed to surgery.
My doctor’s earlier procedure ran long, I was supposed to roll into surgery at 11 am and got going after 12 pm, so I was very anxious, but seeing her and the anesthesiologist walk in and say it was time to go felt better. I got some snoozy drugs on our way to the OR after kissing bf goodbye, in the OR I was introduced to everyone on the team, and then got knocked out cold.
When I woke up, I was immediately VERY FREAKED OUT. I had known I would have a spinal anesthetic in addition to being intubated and under general anesthesia, and as I was going to sleep in the OR, they were scrubbing my back in preparation, but I didn’t comprehend how unnerving it would be to wake up unable to move a large part of my body. I was moaning and trying to move and a nurse sitting next to me looked up and asked if I was in pain, and I responded no, but continued moaning and trying to tell her I couldn’t move and it was upsetting me. She might have given me something, because then I was out for a while again, and I was just starting to move my feet and legs when I was wheeled into my own room later, with my bf waiting with flowers and a stuffed animal.
My nurses introduced themselves, told me it was around 4 pm, and started me on pain meds. I was vaguely aware that my crotch felt a little sore or dry, I had a urinary catheter in, and my hips felt sore, but my abdomen had 1 area that really stung, and my shoulders, diaphragm and abdomen hurt. They told me the area that stung was actually razor burn and were ticked off at the surgical team for razor burning me, and the shoulder pain was the CO2 gas used to inflate the abdomen for the surgery. I did not have a sore or dry throat though, which others had said they woke up with. I visited with my bf, he texted everyone, and I dozed on and off for a few hours, sipping water a little. I did not try to get up yet as I had “squeezy thingies” on my legs, so though I was terrified of blood clots, I didn’t rush it.
My boyfriend had to leave for a prior engagement for dinner, but I was fine in the care of the nurses, and had a small applesauce and small yogurt in addition to water that night. I did feel lots of nausea but paged the nurses before I was going to throw up and they got me meds. I slept great overall, though there were people in and out all night.
In the morning, I had a little more to eat (yogurt again) and drink, and a nurse removed the urinary catheter and helped me get up to the restroom. I did not have any gauze or packing vaginally like some people described, but I was very sore there. I urinated like a pro the first time, then did a lap around the surgical floor with a nurse’s help. I was totally exhausted then, so they helped me get back to bed and my doctor checking on me mid-morning was the next activity. I had managed to toot by then, which was required for leaving, so she was happy to hear that, thought my incisions looked good, and said I had done well overall and everything was out to pathology.
I dozed on and off until the afternoon, when my boyfriend came to get me; I didn’t bother with showering or anything at the hospital because I was too tired and eager to get home to my bed.
Overall, recovery was smooth once I was home. I did develop an itchy rash on my back that spread to my front and buns, thighs, and vulva/vagina; I called my doctor and her nurse called me back with advice to stop taking Percocet (I had started at the hospital and was taking it and ibuprofen every 8 hours) and take diphenhydramine and apply hydrocortisone cream everywhere BUT the incisions, and it stopped everywhere except the vaginal area, so I called again and they thought I might have a yeast infection, so called in meds for me; that did the trick. I never had the discharge I thought would accompany a yeast infection, just itchiness, which was hard to distinguish from the allergic reaction.
Other than that: I had gas pain (both GI gas and abdominal inflation gas) for the first several days, and I was very scared about my 1st bowel movement, but it went fine. I took Miralax, as my doctor had advised, and drank plenty of water and ginger and mint tea. I was very emotional, quick to cry over nothing, and very tired. The first week I hardly did anything, even watch TV, because I had no attention span, so I napped and petted my pets. The 2nd week I felt up to a bit more and walked around outside a little every day to get some sun. I was still tired, sore and recovering after 2 weeks, but I was also ready to be out of the house earning my keep again, so going to work wasn’t a big deal. I just took it easy on myself and took plenty of good snacks and drinks, tried to lay out clothes and plan dinners before, and I did fine with the support of my coworkers! I had big-time swelly belly the first week or 2 back, but now I hardly have it and feel more emotionally evened out, too.
I had my recheck and internal exam at 8 weeks post-op, because my doctor is very popular and hard to get in to see, and everything looked great. I saw 1 bit of suture when I urinated around week 3 or 4, and had a small amount of pinkish spotting post-op, but overall, recovery was fine. My OB-GYN was happy with external scars and healing and said internal looked and felt great, no sutures were present and there was no excessive scar tissue or granulation.
Weirdly, the root of all my problems was not PCS or adenomyosis at all, but a rare arterio-venous malformation that resulted in a uterine hemangioma. This is very rare and is usually found during c-sections or childbirth when the mother is bleeding uncotrollably. It is a source of VAGINAL (not menstrual) bleeding, so all that time changing around on birth control pills to try to regulate the bleeding would never have made a difference, and an IUD would not have helped, either! So glad to have answers, and a solution!
I got the all-clear for sex and other activities; sex has been a near daily event the past week and everything works fine, feels fine, and best of all, is totally not painful! My bf is very pleased that I am the “initiator” now after all these years, and no bleeding and pain makes him even happier!
I am gradually resuming walking my naughty huskies, and in a month or 2 plan to join a gym once I feel almost 100%, but so far, I am LOVING LIFE post hysterectomy! I am so glad to be through with all the bleeding all the time, and the madness of having my life controlled by a tiny little pill that didn’t do anything to help the bleeding!
I am gradually resuming walking my naughty huskies, and in a month or 2 plan to join a gym once I feel almost 100%, but so far, I am LOVING LIFE post hysterectomy! I am so glad to be through with all the bleeding all the time, and the madness of having my life controlled by a tiny little daily pill that didn’t do anything to help the bleeding! I was also never able to comfortably use tampons, partly due to a backwards-tilted uterus, partly due to my own terror or TSS, so not having to deal with that ever again is amazing!
I strongly recommend being your own advocate and seeking a doctor who listens, asks questions, respects your opinions, and wants to help you feel better. I have been bouncing around for years having doctors tell me that excessive bleeding, pain, etc. is just part of being a woman or recommend getting pregnant, sometimes that helps the uterus get back into cycle. Fortunately I didn’t listen to any of them along the way and am very pleased with my friend’s recommendation to see her OB-GYN. I would say every person’s recovery is different; don’t stress if you are not back at work after 2 weeks, I was able to do it in part because of the nature of my job and my amazing supervisor and co-workers! Take your time, heal properly, rest well, ask for help, and don’t be afraid to call your doctor daily with questions pre- or post- op!