It can be hard, making the decision. A hysterectomy seems like a huge thing, and we’re asked to choose whether we want it or not; only a small percentage of women have an emergency hysterectomy – when there is no other option.
I thought it might be useful for me to write down my own thought process for others to read; I’m the sort of person who analyses every option but in the end, once I’d decided, I didn’t go back and forth on it! Just a quick warning before I start – these are my genuine thoughts through the process. Some are based on facts and some were my gut feelings. If I say something ‘sounds horrible’ that’s just what my mind thought at the time. It doesn’t mean you might not think differently and feel it’s an option worth trying!
I was diagnosed with fibroids when I was 39. I hadn’t seen a GYN at this point, it was my family doctor who told me the results of the ultrasound. During the appointment he gave me a multi-page printout which explained what fibroids were and all the various treatment options, and made me an appointment to see a GYN (wait times meant this took about 2 months).
So I went home and read the info he gave me. I had a few gut reactions:
I don’t want a hysterectomy (that seems too extreme).
I don’t want an ablation (that just sounds horrible).
According to the info that left me with several options: Lupron, myomectomy, or UFE.
I wasn’t that keen on the idea of Lupron so I thought myomectomy or UFE was probably what I would choose.
So here’s what my internal voice was saying about the different choices:
Hysterectomy – that seems very extreme. My fibroids are not very big. Removing an organ seems like a last resort, surely? This must be the biggest, hardest surgical option…
Myomectomy – this seems the sensible option. Remove the fibroids, job done, problem solved, no fibroids, no major organ removal.
UFE – a bit more high tech… I’d like more info on how it works, but it sounds great – no surgery, problem solved.
Ablation – burning the inside surface of the uterus? Ugh that does not sound fun at all… it sounds like a form of torture! (please note again, these were my thoughts at the time, I’m not saying this isn’t worthwhile for some women!).
Lupron – could be an option but I’m not sure about messing with my hormonal system (I already don’t like having to take birth control).
A couple of other things to know about me at this time: I was in a happy, long term relationship, and I didn’t want children. I’ve never wanted children! Also, my mother had fibroids and had a hysterectomy.
Believe it or not I didn’t spend much time with Dr Google at this point! I just waited until my GYN appointment.
So I went to see my GYN with a notebook and a list of questions. Turned out my GYN was lovely. She was young, and female, and happy to answer each and every question I had until I was happy I understood. Fairly early on she said her recommendation would be to have a hysterectomy. I was quite surprised by this, and I explained that it seemed the extreme option, and she replied that she had no problem referring me to other doctors for another treatment. She also said if I wanted she could book me in for a hysterectomy in a couple of weeks! This was moving a bit fast for me so I asked if she could put in referrals to see someone about myomectomy, and someone else about UFE, and I’d go away and think about what she’d said.
And this is where Dr Google came in. Amazingly, I managed to find websites with useful information and avoid the scare sites. I read about the different surgeries on medical websites, I read lots of posts, and posted myself, on the hystersisters.com forum. And I joined a few groups on Facebook. (Check out the ‘resources’ page if you’re looking for sources for info).
I discovered far more women than I had expected who had hysterectomies for fibroids. And I learned more about the pros and cons of each option. Here’s how my thought process about each option had changed:
Hysterectomy – The only option that means more fibroids can’t grow. I can keep my ovaries so no menopause. Surgery is actually quite straightforward; it’s a common surgery and surgeons are very experienced. I don’t need my uterus for anything. It would mean no more bleeding, ever (wow that would be amazing).
Myomectomy – Not as straightforward as I first thought. Often chosen by women who still want to have children – I don’t. A more complex surgery than a hysterectomy; they are cutting in to the uterus and then stitching it up rather than just removing it. Longer surgery. More risk of bleeding. Reasonable chance more fibroids will grow and I’ll be back to where I started.
UFE – seems to be very painful immediately after treatment. Takes a while to have an effect. More fibroids can grow. Risk of tiny pellets used ot block blood flow going to places they shouldn’t.
Ablation – my views are the same…. burning the inside surface of the uterus? Ugh that does not sound fun at all! And it doesn’t seem to be a treatment for fibroids, more just for bleeding. So it’s not really an option at all.
Lupron – too many negative stories on the internet about bad side effects. Not necessarily a permanent fix for the fibroids, likely need surgery as well. Most commonly used to shrink fibroids before surgery, which isn’t something I need to do.
At this point, much to my surprise, hysterectomy had come out as the best option. I really hadn’t expected that because my instinct said it was the ‘bigger’ surgery, when in reality that’s not entirely true. Weighing up the pros and cons I chose hysterectomy. These were my pros and cons:
No chance of more fibroids
No more bleeding ever
Common surgery – fairly quick, low chance of blood loss
The only ‘cure’ for fibroids
Small risk of issues like prolapse when I’m older
Small risk ovaries might stop working
Any surgery is a risk
For me, the small risks that were cons were not strong enough to unbalance the strong pros like no more fibroids ever. I found having fibroids very mentally draining, as well as physically tiring. I’d always had very regular, trouble-free periods and now I had random bleeding, heavy bleeding, clots, and pain. I couldn’t sleep through the night, I had to take birth control continuously to get the bleeding under control. I knew if I opted for surgery and then down the line all of these symptoms came back I’d be distraught. I didn’t think mentally I’d be able to handle it – what’s the point in surgery if it doesn’t fix the problem?
So I chose a hysterectomy.
This was *my* thought process. This doesn’t mean it will be *your* thought process; what I’m showing here is how I made my decision, and I think everyone considering a hysterectomy should think about it in the same way. Find factual information and reliable personal experiences online, but also think about what it means *for you*. It is you that is having this surgery, not your friends, your family, or some people online you’ve never met. If you don’t think it’s right for you, don’t do it!