Personal stories

Hear from women who have been through a hysterectomy

My Own Story

by Isobel

The first symptom I had that made me wonder if something was wrong was bleeding. Now to give a little context, my periods had always been like clockwork, and not very troublesome at all. They always came when they were supposed to, they always lasted 5-7 days, I only needed regular tampons. Predicable, low hassle. But now the bleeding was heavier, and lasting longer, and they weren’t as reular as they had been before. I was getting a little concerned. Or annoyed! So I finally plucked up the courage to go see my (male) family doctor about it. He said well, this happens as you get older, do you want to try birth control. I’d not used it before but I wasn’t interested in getting pregnant so I said ok. I tried two or three different kinds and none of them fixed the problem; they made my priod regular but the bleeding was still very heavy.

I will be writing an article shortly about heavy bleeding… I told my doctor it was heavy and he said that was normal. It wasn’t normal. It all depends how you quantify heavy! Mine was so heavy that I would have to set an alarm to wake me up twice during the night so that I could change tampons and pads so that I wouldn’t bleed all over the bedsheets. I was going through one of the largest size tampons an hour when it was heaviest. That’s not normal.

So when the birth control didn’t fix the problem my doctor sent me for an ultrasound. He didn’t say what he was looking for, and I didn’t think to ask! The results came back – fibroids. It showed I had 3; two that were about 3cm and one that was about 4cm. That really threw me, but not because I didn’t know what fibroids were. My mother had fibroids, althouh she just had one that grew very large. She and I have very different lifestyles (for a start she had 3 kids and I had none) so it never occurred to me that I could also get them. Turns out they’re frequently genetic. He gave me a substantial print-out of all the different treatment options available for fibroids so I could start thinking about things.

Now we knew what the problem was I was referred to a GYN. Living in fairly rural Nova Scotia I wasn’t sure what to expect but thankfully there was an office about 15mins from my house and I had to wait 2 months for my appointment. My GYN was great; a young woman, very knowledgeable and very helpful, happy to answer any and all the questions I had (which was a lot!). She gave me lots of info and recommended a hysterectomy when she found out I didn’t want children (I was 39 at this point). She told me they could book me in right now, but I wanted to wait, do some research and have a think before deciding. I told her I was considering either a myomectomy or UFE, neither of which she could perform, but she set up referral appointments for me to see specialists for both of those treatments. As it turned out, I didn’t need the referrals!

At this point I was taking birth control continuously to try and stop the bleeding, which had made me anemic. This worked for a few months but then I started spotting and bleeding randomly, whenever my body felt like it. I hated this… blood unpredictably and most of the time. I was also getting really bad cramping, which was at it’s worst in the middle of the night. It would wake me at around 3am every other night with extreme pain. I’d go to the bathroom and that wouldn’t help so I’d end up curled up on the bathroom floor, waiting for the pain to go away. No painkiller would touch it; I tried taking the 12hr painkillers before going to bed and they had no effect.

I spent about 3 weeks researching. I read articles online, doing my best to stay away from the sites designed to scare you, and the sites that aren’t scientific. I got the most value from using forums and Facebook groups filled with women who had been through the same thing I had. They were so helpful, people sharing their experiences and offering advice. I also found I knew several women who had had hysterectomies (unknown to me) so I spoke to them, and my mother, and my husband (to-be at that time). In the end I decided that a hysterectomy was right for me. When I first saw the list of treatment options my doctor gave me a hysterectomy was last on my list. It seemed the most extreme, the most invasive, the most major. But as I read about the options it seemed like a myomectomy was more extreme (more cutting, more bleeding, more healing), and nothing but hysterectomy would be a definite permanent solution, which was what I wanted. So at my next appointment with my GYN I told her I wanted to go with the hysterectomy, and she got me booked in for the next month.

Once I’d decided I never doubted my decision. Something needed to be done, and a hysterectomy was the best option for me. I knew I couldn’t have surgery only to have more fibroids grow. A couple of weeks before surgery I had my pre-op appointment and I took my husband-to-be along with me, partly for support and partly so that he could get some information as well and be involved in the process. This appointment was mainly a chat about everything with the ward nurse but there were also blood tests, blood pressure checks, that sort of thing.

And then it was the day. I am still amazed that I was able to sleep the night before. I don’t even remember feeling too nervous… it just felt like a path I was on and that was that. My husband-to-be drove me in and stayed with me as long as he could. There were various stages of checking in; putting on the gown, blood and urine samples, EKG, changing into a very attractive gown, but everything went very smoothly from one area to the next until I was sitting in the waiting area. My GYN (who was also my surgeon) came out to speak to me and told me that everyone involved in my surgery was a woman! I imagine this is quite unusual and it gave me quite a comforting feeling – nothing against male surgeons etc. but it just felt nice to know I’d be with women. Next my anesthesiologist came to speak to me. I told her I’d had nausea issues with narcotics before, and that I was worried about being sick when I woke up, so she told me she’d take care of that. Then it was time to go. I said bye to my husband-to-be and walked into the OR and climbed on to the table. A nurse chatted away to me, very friendly, explained what was going on, and the next thing I knew I was trying to wake up in recovery. It was literally that fast, I don’t remember them telling me I’d be going to sleep or anything, one minute I was chatting away, the next I was in recovery. My eyelids were really really heavy and I remember it was hard to open my eyes and wake up. Next thing I remember I was in my room and my husband-to-be was there with a nurse. Everything had gone like clockwork, it had been a textbook surgery. I felt very sleepy and a bit out of it, but not in pain at all.

I must have woken about midday. I don’t remember a huge amount about that afternoon; I was very groggy but not in pain. I just took pills whenever they brought them! At around 7pm the nurse got me out of bed for a little walk, across the room and back. I did this very gingerly, but again I don’t remember much in the way of pain. Which was good!

The next morning they removed the catheter I’d had in. This was a strange sensation, but not painful. By mid-morning I felt a bit hungry so I ordered some soup. I’d barely swallowed one spoonful before I got super-nauseous. One of the nurses was amazing and immediatly produced one of those wet wipe cloth sachets, opened it and made me smell it. My nausea went away! Thank goodness, I wouldn’t have wanted to throw up given I’d had open surgery. That day I went for more short walks and by mid-afternoon was hungry enough to order food again, and this time was able to eat a whole serving of lasagne (which shocked my nurse!).

I stayed in hospital for 3 nights altogether. They said I could leave after 2 but I didn’t feel quite ready, however after 3 I was suddenly desperate to get home and get into my own bed. My husband-to-be drove me home in our truck; he’d built a little wooden step for me to use so I could climb in! The drive home wasn’t too fun; every bump was a bit sore, but I was so relieved to be home and able to relax.

For my recovery, the first few days at home my husband-to-be did the cooking and helped me to have showers, but after about a week I could have a shower myself. I was able to get in and out of bed myself from the time I got home, although I never slept lying flat because I found it sore; I slept propped up on lots of pillows (I also couldn’t sleep on my side until about 5 weeks after my surgery). Each day I walked around a little more, and I tried to get up regularly to move around. After 2 weeks we went into town to walk around and I lasted about 10mins in a shop before I was too tired! It was after 3 weeks that I felt able to drive, although I still couldn’t go out and about for long periods of time.

I’d say through all my recovery pain was never really an issue. I had no bleeding, no problems, I took a low dose of dilaudid along with ibuprofen and that was all. I stopped the narcotic after a week with no issues. I just made a point of taking it really easy. Someone gave me some really good advice (which I now frequently pass on to others): you only get one chance at recovery, so take your time and do it right! There is nothing to gain (and a lot to lose) by rushing it. I did a little more each day, but when I felt tired I rested.

I saw my family doctor at 2 weeks to check the incision was healing OK, and my GYN at 6 weeks for a check-up which included an internal exam. She told me there was no cancer (phew) and that everything was healing up well. And that was that!

I would say the part of recovery I wasn’t quite ready for was the tiredness. I was tired for a long time, it took several months for my regular energy levels to come back. But 11 months after my surgery I was helping clear woodland to build a house on…. one year and one week after my surgery I got married back in Scotland, and over the next 3-4 months we helped build the house and moved in.

As I write this I am 8 days away from the 3 year anniversary of my surgery. I have no regrets at all; I can do what I want, when I want, with no worries about pain or bleeding getting in the way :o)