Michelle’s Hysterectomy Story

Type of Hysterectomy: LAVH
Age at surgery: 32
Location: Australia

From the moment I first got my period at 12 years old, I had horrific pain and bleeding. I was in pain for over two weeks of each month which caused nausea, sometimes vomiting, horrible bloating, and fatigue. I was put on various birth control pills which did nothing and which I had to stop as I was diagnosed with focal migraines. I had my first of six laparoscopies at 19 years old where I was found to have endometriosis. During each subsequent lap the endometriosis was found to have returned and during my fifth lap my gynaecologist at the time suspected adenomyosis as well, which was confirmed via MRI. I was put on Depo Provera when I was 22, which also did nothing.

I always knew a hysterectomy would be on the cards and I was lucky to have the family I always wanted, but I needed to get over the mental and emotional hurdles. Finally last year I decided enough was enough! During my period I couldn’t stand up straight, I had leg and back pain,my leg circulation was poor and I was so, so tired. I went with a recommendation from friends, and met my gynaecologist.

He performed an ultrasound and pelvic exam, went over my thick pile of results and findings from my other surgeries and said he had no hesitation in booking me in for a hysterectomy. I had to wait until September as he wanted a general surgeon in with him in case there was any other organ involvement, which required having to align their schedules and booking a theatre time at a hospital they both worked out of. The following few months were filled with appointments, blood tests, and pre-op consultation with my anaethetist and the hospital.

I didn’t go with any second or third opinions as I had been told over the years that a hysterectomy was the only thing that was going to help and even then it isn’t guaranteed to cure endometriosis. But I was so excited to finally have the chance to be pain free after 20 years!

My surgery was the second ‘big’ operation of the day, and I was required to be at the hospital by 6.30am. I had chosen to go private, so I had my own room in the private wing of the hospital which was more like a swish hotel! I was treated so wonderfully by all of the staff from the moment I arrived, and was in theatre by 8am. While they were placing my IV for my general anaesthetic I joked around with my gynaecologist to make sure that he counted his instruments to make sure none were left behind (I have a Nursing background, so I’ve heard all the horror stories!)! My surgery took almost 2 hours, and I woke in Recovery in excrutiating pain. I was hysterical, but the nurses had exhausted all their pain relief options so my anaethetist was called and I remember hearing him tell me that he was going to give me some different pain medications. After that I fell asleep, and I don’t remember returning to my room (but I apparently told my husband all the medications they’d given me!). I had a catheter and drain in situ, most uncomfortable and they pulled whenever I moved. I spent most of the rest of the day and that night sleeping.

The second day was absolute hell. My mum had a hysterectomy in 2006 and she said on the second day the fire alarm went off and all she could think was “They’ll just have to leave me here because there’s no way I can move!” I was vomiting, in so much pain and wondering why I had done this to myself. The nurses gave me antiemetics (anti-nausea medication) and I slept when I could.

The next day, I felt like a new woman! Still in pain, but I was impatient for them to remove my catheter and drain so I could have a shower. In the afternoon they took everything down, and I slowly made my way into the shower, which was heaven! It was like bathing in rain from the Gods, and I think I sat in there for almost 45 minutes! I was excited by the prospect of going home the next day, ate my meals and watched tv. That evening I called my Aunty, and we had a good laugh (while I hugged my pillow!). Half an hour later my nurse came to do my obs, and was shocked to see my heart rate bouncing along at 136. I told her I had tachycardia, but it was usually at 110). She gave me half an hour, then checked it again and it was higher. So she MET called me. I had a team from Emergency come in with the crash cart, who looked after me well. The decision was made to move me into Emergency where I could be continuously monitored. So I spent the next almost 18 hours in a resuscitation bay and attached to a continuous monitor while my haemoglobin was closely monitored (it was dropping). My heart rate was still 140, but dropped when I was asleep down to 80. I just wanted to go home! Finally they let me go back to the ward, with instructions for hourly obs. They gave me some Valium as I was stressed out by the huge scare, and by morning my heart rate was back down to 100. My poor gynaecologist received many calls over the course of that time. He finally said I was allowed home on the Friday, after my surgery being done on the Monday and as wonderful as the staff were it was so good to be back in my own bed!

I think after my scare I should have been entitled to a smooth recovery, but alas that was not to be. I was still in a lot of pain, which I expected but I was running a temperature which concerned my gynaecologist at my checkup a few days after I got home (my checkup was meant to be at 8 weeks post-op but he wanted to keep a close eye on me). An ultrasound showed a haematoma at the top of my cuff, and he suspected an infection. So I was put onto heavy duty antibiotics, gave yet more blood and a urine sample and sent home to rest. I began vomiting, and my poor heart was still upset so my GP sent me to Emergency at my local hospital after an ECG.

While there they pushed through IV fluids as I was extremely dehydrated, did more bloods, another ECG, and called my gyneacologist. After my fluids my heart rate came down, and my gynae suspected it was the antibiotics making me vomit. So they changed them, I was allowed home and the next morning I felt more human. Finally! I slowly improved each day but I made sure I listened to my body and rested when I needed to. I was lucky to have my husband home with me for four weeks, and I didn’t do anything I wasn’t allowed to. At 8 weeks my gynaecologist was thrilled with my recovery, and I was released with instructions to take it easy for the next couple of months.

I’m now almost 5 months post-op and having my hysterectomy is one of the best decisions I’ve ever made. At 3 months I was still up and down, but now I feel great apart from ongoing fatigue which can be quite bad some days. I do get some twinges in my pelvis still but my leg pain is gone and the circulation to my legs has improved so much it’s crazy. I am now under the care of a fantastic cardiologist for my tachycardia and I’m hoping I never have to see my gynaecologist again, as wonderful as he is! I have had some hair loss and I have gained a lot of weight after an initial loss of almost 10kgs but I’m hoping to knock it all back off this year. I started getting ovulation pain again 2 months ago and the incision site at my navel is still tender but it’s nothing compared to the pain I experienced for 20 years prior to my hysterectomy.

Please realise that it is major surgery, and a last resort. A lot of people seem to think it’s an easy fix to never having a period ever again, but it really isn’t. Find an experienced gynaecology surgeon and discuss the procedure they think will be best for your situation. In my case a lap assisted vaginal hysterectomy was considered to be the best as they needed to remove more endometriosis while they were in there. I kept both my ovaries as there was no reason at this stage for them to be taken unless my endometriosis recurs. Everything else – uterus, cervix and tubes – were taken.

The most important thing, I think, is that even if you think that you’re mentally ready, it is still a rollercoaster of emotions. I wondered if it’d make me less of a woman, if my husband would still love me, if the pain would truly go away or if it’d be worse than before. It has been so hard but so, so worth it for me.