Wish I’d a hysterectomy years ago! – Sharon’s Story

At the age of 40 I was diagnosed with fibroids. A scan confirmed I had about 10 of them, the largest was almost the size of a rugby football, the others between the size of a tangerine and an orange. All of them subserosal so my uterus was quite deformed.

As I had no intention of having children, the mistake I made was not opting to go for a hysterectomy immediately. Instead I thought I would try embolization, mainly because I was self employed and taking between 2 – 3 months off work was not cost effective for me, so a 2 week recovery post-embolization was a lot more appealing. I had it done – not a pleasant procedure I have to say – took 2 weeks off (but had pangs of pain for about a month), and off I went to wait for them to shrink and then disappear.

Unfortunately, the size of my abdomen didn’t shrink that much and 3 years after the procedure I started to get some very strange symptoms. Severe indigestion (something I had never suffered from before), bloating, would fill up quickly when I ate and I was absolutely knackered by the end of the day. I went to the GP who took some blood for a CA125 test and waited to hear if I had ovarian cancer – it was the worst 2 days of my life.

Thankfully the tests came back negative, so I had another scan to check how well the embolization had worked.. It had stopped working and the big fibroid hadn’t shrunk that much and I now had more. Hysterectomy was the only option.

I researched the various options and decided I wanted a laparoscopic bilateral salpingectomy with hysterectomy (common practice in the US as it preserves ovaries but facilitates an easier progression to menopause), so I found an excellent surgeon in Guildford and booked my appointment. Then I went to my GP and asked for my referral and this was the date I wanted the surgery done (I’m not backwards in coming forwards and my GP knows that). I also made it clear to my GP that if I couldn’t do it this way, then I would have it done the old fashioned way through an abdominal cut. Vaginal was out of the question as I had spoken to several women (including my sister), who’d had it done this way, and all were suffering either a cystocele or a rectocele or both! So, the conclusion of my extensive research was, whilst recovery was considered “quicker” through vaginal hysterectomy, the consequences may in fact be significant leading to further complications. I was totally prepared to spend more time off work from one surgery, than risk more surgery and further problems throughout my life.

I went into surgery, prepared for either laparoscope or cut – because the fibroids were still quite big. When I came out, having successfully had it done laparoscopically, for a few hours I felt absolutely fine (mainly due to the anaesthetic that was put into my lower back), but about 12 hours later it wore off and I was in agony. Several thimbles of morphine later I started to feel slightly better but it was 3 days before I stopped passing out after either moving or peeing. I spent 3 nights in hospital.

I am now in week 12 of recovery and I feel great. My ovarian cancer symptoms were caused endometriosis (that I had NO idea I had), that had been deposited by my distorted womb on my bowel and diaphragm. The embolization left me with adhesions bladder. All of these problems were sorted during surgery but the adhesions made it more difficult – so I was VERY happy I had not opted for vaginal as I WOULD have ended up with problems. If I’d left it any longer I would also have been seeing a colorectal surgeon because of the damage the endometriosis was doing to my bowel. I was driving again by week 7 and had resumed almost all of my normal daily activities by week 10. I am going for my first run since surgery today (week 11), and if that goes well, then I’ll be back on my bike at the weekend. I have a slightly leaky bladder due to the adhesions but it’s not serious and certainly not even as bad as some women have when they give birth. My Kegal 80 is sorting that out at the moment anyway.

My personal advice in a nutshell is this.

If you’re not a young woman of child bearing age – don’t opt for embolization to treat fibroids. In my case it was a complete waste of time, that in fact did more damage that good. This statement is not a criticism of the surgeon who carried this out in any way because he was excellent – it’s about facts and consequences that at the time I didn’t fully understand.

If you have symptoms that indicate endometriosis, or you have it – then make sure this is taken into consideration when choosing your surgical option. Don’t be afraid to keep going back to your GP with questions – its so important you do this. You want ONE operation after all!

Do your research on your procedure and the surgeons who carry out these procedures. Request success rates and if you’re not sure where to start, ask someone you trust to help you!

If you don’t want the surgical option put to you, then ask why it has to be done that way and ask it’s explained in a way that will ensure you understand the pro’s and cons of it. Ask for this in writing, then that way you can take this away and do even more research.

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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

1 comment

  1. So glad to have read this. I’m 34 with no children and have decided to have a hysterectomy this year due to severe endometrisos. It’s being done by laparoscopy too but I was worried how long the recovery might be, and how hard, reading about someone else’s recoevry does actually fill me with some confidence! Thanks for sharing your experience and long may your recovery continue x

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