Post Fibroids – Sally’s Story

In June 2011 my GP felt a large mass in my abdomen so I was referred to a gynaecologist. On an ultra sound one of my ovaries couldn’t be seen so I had an MRI to check it wasn’t ovarian cancer and luckily it wasn’t. I had a large subserosal fibroid and 2 tiny ones.

The consultant explained about hysterectomy, myomectomy and leaving the fibroid in situ. I later asked about embolisation. Initially I opted for a hysterectomy and he said I could decide on the day of my op whether or not to keep my ovaries. I said I’d have my cervix removed as I’d had abnormal smears in 2009, although not serious ones.

I then looked online in attempt to make an informed decision. Although the large fibroid measured 16cm x 11cm x 8cm I had very few symptoms, mainly bloating, no pain or heavy bleeding. My op was scheduled for Nov 11 but I still had many questions. I’d read that a hysterectomy should be the last resort. I was very confused. If I had bad symptoms the decision would have been easier. There were so many unknowns and a lot to consider. One thing I did decide early on was to keep my ovaries because I wanted the testosterone after menopause. My surgeon decided to cancel/postpone the surgery hours before my pre-op as he could tell I was unsure of my decision. At no point did he suggest what I should do.  It was up to me to decide with my layman’s knowledge!

Early 2012 I wanted a myomectomy, a much bloodier operation but I didn’t want a blood transfusion. I worried that the 2 small fibroids might grow if I went on to HRT to reduce the hot flushes that were disturbing my sleep (I am now using natural progesterone cream for hot flushes but that too can apparently make large fibroids grow!).  In April I saw a lady registrar who told me that most women, even with a large fibroid, left it in situ if they weren’t getting problems. I discussed with her concerns about sexual function. She told me there are nerves in your cervix that can affect your orgasm and I’d also read this on line. She suggested that, should I need surgery in future, to have a sub-total hysterectomy. Great! Decision made to leave the ‘alien’ in!  Symptoms and hormone tests in January showed I was peri-menopausal so it was unlikely to grow unless I took HRT! Three weeks later I looked pregnant (not good at 49) and I had my first period for 5 months. A new test showed my hormone levels were in the normal range. I had another ultra sound which suggested the fibroid had grown so I opted for a sub-total hysterectomy.

I’ve not had children but that wasn’t the real concern. I struggled with so much contradictory information and the fact that we are all different. There were so many uncertainties. I was scared about weight gain post op and being unable to lose it as many women seem to experience this. I’ve mainly been slim which is why looking bloated was a problem for me. I was also worried about orgasms being affected. Right up to the day of the op I was considering cancelling. What got me there in the end was that I might still be wondering what to do for years to come and I needed closure. My inability to make a decision was causing me a lot of anxiety despite asking friends and family to help me decide. Maybe I was too informed!

I joined a gym in June to get fitter and I lost half a stone. I had the op early Oct and it went well. I hardly used the PCA, I didn’t get an infection and kept wind at bay by drinking peppermint tea!  One week post op I went into town for an hour. My energy levels were amazingly good. 5 months post-op my lower abdomen is still numb and sometime feels uncomfortable. My scar is neat and tidy. I haven’t gained weight. Orgasms are fine but I don’t know if that would have been the case if I’d not kept my cervix.

Pre-op I saw several doctors hoping to make what has been one of the hardest decisions of my life. The fibroid hadn’t grown but at least it’s gone now. I asked for a photo of my fibroid so if I had any problems post op and wondered why I’d had the operation with so few symptoms  I could look at it and tell myself that’s why!

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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.

4 comments

  1. Really useful to read your story. I have just discovered I have multiple fibroids and it scared me silly. My first thought was that I would HAVE to have surgery. I have since calmed down and am waiting for a referral appointment to come through with a gynaecologist. They could not see my ovaries either. I was told I am perimenopausal last year, but now wondering whether some of my mild symptoms are due to the fibroids. I don’t have anything severe bothering me. I have just been told that the gynaecologist may want to do an MRI to see the position of them (ultrasound tech mentioned one near my bladder), I went to the GP for irregular periods which she said was probably hormonal but the ultrasound will double check for any structural issues. I am slightly concerned what else might be going on and what decisions I might have to make, it is good to read that you found it hard to decide. Good to hear you are happy with your choice.

  2. I didn’t realise until after my Total Abdominal Hysterectomy (including the cervix and fallopian tubes but not the ovaries) that lots of the things I was putting down to my peri-menopausal stage were caused by pressure from my enormous fibroid. Since my surgery I have noted several improvements to my health. The problem with haemorrhoids has disappeared, I have not had a UTI, my constipation problems have lessened and my lower back pain has improved. I also have not had any episodes of stress incontinence sine the operation and this had been an increasing problem. All these symptoms can be attributed to the extra pressure being exerted by the bulk of the fibroid. I also lost 1.1 kg immediately due to the weight of the fibroid!
    I now have an interesting ‘smiley face’ scar and a nice flattish tummy! Sexual enjoyment has not been compromised either. I am feeling positive about my well-being and glad I can move on with life.

  3. Thank you for sharing your experience, I am in the same situation. I have been procrastinating for the last three years as to what to do, my womb is now the size of a 5 mth pregnancy. I have no other symptoms so it is hard to work out what is the best option. The suggestion by both male consultants is a full hysterectomy incl. cervix. I will keep reading . I am glad you are on the road to recovery. Thanks

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