Stephanie’s Vaginal Hysterectomy
Age at Surgery 30
Location: Boston, MA
I’ve had terrible periods my whole life. When I was younger, I didn’t realize they were abnormal, because it wasn’t really something we talked about as a family or in school. In my late teens I finally realized that having a period that lasted for more than two weeks, and was extremely heavy, was not normal. I started a 12 year journey of trying to find out what was wrong with me, and fix it.
I bounced from one OBGYN to another for years. I was met with various responses. Some told me to just “suck it up” and that this was just part of being a woman, despite the blood loss from my period leaving me in a constantly exhausted state, and feeling generally terrible for more than 50% of the time. And the severe backaches and digestive problems. And the pain. The general crappiness, if you pardon my french. A few OBs would suggest different birth control pills; I ended up trying almost 10. None helped much with my period, and all had unpleasant side-effects. I was never given an ultrasound or diagnosed; everyone just tried to give me a pill and send me on my way.
In my mid-twenties I started getting ocular migraines (no headache, just weird hallucinations), and was told I could no longer take combination pills because of an increased risk of stroke. I started doing my own research and decided that maybe an ablation would be a good solution to my problem, because it was non-hormonal and I had decided long ago that I never wanted children. I never found a doctor who would take my request seriously; everyone was convinced that I would eventually change my mind and have kids. I tried a few more mini-pills (no estrogen, so no increased risk of stroke), and eventually had a Mirena IUD put in. The Mirena helped my period a little – it went down to 10-14 days of heavy bleeding, but I was still miserable, and experienced unpleasant side effects. I even started having panic attacks 6 months after having it put in. I have no proof that they were caused by the Mirena, but they did go away immediately after having it taken out, three years later!
Anyway, after suffering with the Mirena for 3 years, I broke down during a physical with my GP. I told her I couldn’t put up with this anymore, and I really wanted a permanent solution. She actually asked if I wanted a hysterectomy and my immediate gut reaction was “of course not!”, because in my mind that was like a serious surgery that was done in life-or-death situations, or for cancer. I still had my mind set on an ablation, and she referred me to a surgeon who specialized in minimally-invasive gynecological surgery.
I met with the surgeon a week later, in July 2016. I spent maybe 10 minutes going over my medical history with him, and when I was done he told me he was 99% sure he knew what was wrong – adenomyosis. I asked him what the cure was – he said there was no cure, but he could put me on a high dose of hormones to treat the symptoms. I was disheartened; the last thing I wanted was more hormones. As we walked to the ultrasound room to confirm his diagnosis, I asked if an ablation would be something that might help. He said it most likely wouldn’t, since an ablation destroys the lining of the uterus, and adenomyosis meant my problem was in the muscle of the uterus, not the lining. Plus, he said, most younger women wouldn’t want one because it impacts fertility. I said that wouldn’t be a problem for me, since I wasn’t going to have kids. I can still hear his response today: “Oh, we’ll just take it out then.” I was in shock. Really? He could do that? And it would fix my problems? He confirmed that yes, he could.
I’m not ashamed to admit I started crying, and cried throughout the ultrasound where his diagnosis was confirmed. I’m not usually an emotional person, I was just so freakin’ happy! For 18 years I’d suffered, and not been taken seriously. Been ridiculed by doctors who thought they knew my life plans and desires better than myself. And then there was this doctor, who after 10 minutes knew what was wrong, and was happy to provide whatever treatment we thought would best solve the problem, regardless of my young age and lack of children.
I was elated. The surgery was scheduled for September 2016. I didn’t get a second or third opinion. Everything I read online confirmed that hysterectomy was the only cure for adenomyosis.
Over the next few months, I did a TON of research. I did start to get nervous, worrying about complications. I decided that I wanted only my uterus removed – not the cervix or tubes. I’d read that removing the cervix can lead to a harder recovery, and can cause issues with having sex. For the tubes, I’d read that removing them increases the odds of blood flow issues causing the ovaries to die. The last thing I wanted was to go through menopause at 30!
During my pre-op appointment, I discussed these concerns with my surgeon. After a long talk, he convinced me to have my cervix and tubes removed. He explained that if I didn’t have my cervix removed, I might still bleed every month, though it wouldn’t be as bad. I did not want that at all. 😛 If I was going to have major surgery, I was going to end up with zero bleeding! He also explained that removing the cervix and tubes decreased the risk of cancer, and the risk of complications were extremely small. I’m glad I took his advice.
The day of my surgery came – I was scheduled for first thing in the morning. My boyfriend and I showed up at 6am for my 7:30 surgery. By the time I was in the pre-op room, I was getting pretty nervous. Everyone was fantastic, though. It was a great experience. I talked with the anesthesiologist. I don’t actually know what type of anesthesia I had, but I was completely out. At 7:00 my mom arrived so my boyfriend could go to work. They put something into my IV and I was wheeled away – I remember getting to the room where the surgery happened, and then I was out.
The surgery lasted 2 hours. Apparently the surgeon came to talk to me in recovery around 10am, but I have no memory of that at all. I remember waking up around 10:30am, and they moved me from my bed into a chair. I had minor pain, was groggy, and very thirsty. My mom was able to come up by 11. The lovely nurses gave me a ton of apple juice to drink, and I got really sleepy and took a nap. I woke up around 12 and asked to use the bathroom. After they confirmed I was able to urinate, they processed the paperwork and got me discharged. I was home and on the couch by 1pm! Not bad at all!
The first day of my recovery was fantastic! I was up and about, animated and happy. Very little pain. As it turns out, it’s because I still had the powerful IV painkillers in my system.
Days 2 and 3 of my recovery were the worst, but even though I say “worst,” it wasn’t so bad, all things considered. I was exhausted. My pain in the surgical area was maybe on the 2-3 level. I’d read about gas pain being bad (this website is amazing, let me tell you – if you’re reading my story as one of your early experiences with the site, do stick around. Read the forums. Seriously, it’s an amazing resource), and y’all were right!. The pain in my shoulder was in the 4-5 range. Quite unpleasant. Luckily I’d stocked up on anti-gas medicine, so that helped. I also took hydrocodone for the first three days of recovery. I luckily did not have any issues with constipation, although I did have some issues with urination. It was difficult for me to tell if I’d fully emptied my bladder, and it took a lot of effort to pee.
After the first three days, it got a lot better. I switched from the prescription narcotics to regular over-the-counter meds. It was a high dose, but I was following doctors orders. I was up and about, able to walk around, even take walks outside. I think I went for my first drive on day 4 or 5. The pain was totally manageable – the worst part was the fatigue. I’d read about it on this site, but nothing really prepares you for how it really is. Pre-surgery, I’d come up with all these plans for what I’d do during my recovery – show and movies I would watch, video games I would play, etc. Little did I know that I would literally not have the energy to watch TV – who could have thought that was possible! Even sitting up in a chair for 15-20 minutes was enough to completely wipe me out.
When they say you need to take it easy, they are right. This was easily the greatest challenge in my recovery. I wanted to do more – clean, cook, be productive. But any time I tried, I regretted it. You really need to take it easy, stay on the couch, and treat yourself well. It was hard, but it was the right thing to do.
I had originally requested, and been approved for, 2 and a half week off of work. Between then and actually having the surgery, I was promoted and moved to a different department at work- essentially I was slated to start a new job on the day I came back from my medical leave. This was a huge worry for me. On the Friday before I was supposed to go back, I did not feel ready. I was still exhausted. Sitting in a chair (I have a desk job) was tiring and painful. Had I still been at my old job, I would have asked for another week of FMLA, but because I was starting something new, I didn’t want to. Fortunately, that weekend, it was like a switch was flipped and I felt much better. I started back at work after 2.5 weeks. I was a little sore at first. I was completely exhausted for another week and a half, but all-in-all it was fine.
My first post-op appointment was around week 4. It usually happens after 2 weeks, but my surgeon was on vacation at the 2 week point. So by my post-op all of the incisions were healed (three tiny scars along my bikini line, one “puncture” incision near my belly button that you can’t even see, and one inside my belly button that you also can’t see), and that’s all he checked. At my 8 week appointment I had an exam, and was told that everything looked good and I was released from all of my restrictions (up until that point it was no sex, exercise, or lifting anything more than 8 pounds).
Before my surgery, I talked to (online, of course) women who had hysterectomies in the past. I would jokingly ask “is everything sunshine and rainbows now, or do you have regrets?” I can happily report that for me, everything is now sunshine and rainbows. I feel fantastic. I feel like a new woman. I have so much energy. I’d forgotten what it was like to not feel like crap for 50% of your existence – let me tell you, it’s amazing! No more terrible periods, no more fatigue, no more pain. I am 1,000,000% glad I had a hysterectomy. Truly. My only regret is not finding this surgeon sooner and having the surgery sooner!
I think my one piece of advice to a woman considering a hysterectomy is to make sure it’s the right treatment for her. There are risks of side effects, and it is a permanent procedure. Talk to your doctor. If you decide that hysterectomy is right for you – don’t worry! It’s rough, but not terrible. You’ll get through it, and be feeling fine before you know it.
My advice to a woman who has already decided on hysterectomy is to TAKE IT SERIOUSLY when you’re told to take it easy and relax during your recovery. 😛 I thought that I was special and I was strong and I would be a super-woman during mine, and that was a bad idea. Even though a hysterectomy is much less intense than it used to be (at least if you get a laproscopic one like I did), it’s still major surgery. You only have one chance to do your recovery right, so listen to your body and don’t overdo it!
Also, please take advantage of this website. Seriously, it’s an amazing resource. Being able to talk with women who are going through (or have gone through) the same thing as you is amazing. It’s a great community, and I couldn’t have gotten through this experience without my hyster sisters!