I’m glad I had my surgery – Helen’s story

I had a total abdominal hysterectomy, omentectomy, appendectomy and removal of a rugby ball sized ovarian cyst and another not so large cyst on the other ovary. They have cut me from my bikini line up past my belly button to under my rib cage so they could get the cyst out on one piece.

I felt so unwell before I had the surgery, I looked pregnant, I was severely anemic, I was out of breath, I found it difficult to fasten my shoes, my pants crippled me, I couldn’t eat as I would vomit and the heartburn was constant and incurable.
I was working right up until surgery day, I look back now and wonder how I managed to do so, I’m a nurse in a very busy mental health unit, without sounding whiny my workload is immense. I spoke with a couple of my colleagues recently and they told me how worried they had been because of how I looked, one of them said they actually thought i had cancer and that I might die, obviously they couldn’t tell me at the time.

After the op I was in hospital for 4 days and then home. At first it was very difficult to get comfortable and I was very anxious and squeamish about the wound, you hear of stories where other people’s wounds have come open. I slept on the couch for a week as not only was it difficult to get into bed but I feared my partner might knock me in my sleep. The recovery was really good, I’d say 3 weeks and I felt I could cope with the wound, the pain was much better although physically I was weak.
I had a couple of set backs, at week 5 the biopsy results came back and they found that the larger cyst was cancerous, the consultant however was confident that they removed all the cancerous tissue therefore I do not need to have any further treatment ie chemotherapy.

There was also a small infection in the wound but antibiotics cleared that up. It was the lower part of the wound the bit I felt took the longest to heal, apparently it is quite common to get an infection there, it’s where they have knotted the invisible stitching. I was told that infections like this normally go when the stitches dissolve however because of the redness and swelling they gave me antibiotics.

I have been getting increasingly worse hot flushes as time has gone on, I went to see my GP at week 6 and he advised me that I will have to have HRT there is a high risk I would develop osteoporosis without it, no ovaries = no estrogen. There is a history of breast cancer in my family, my nan died of it and my mum had it but luckily and thankfully survived after treatment. There is an increased risk of breast cancer with HRT however my GP advises me the benefits of HRT outweigh the risks, despite this he is sending me for a breast screening and in the meantime I am to take calcium and vitamin D tablets to help strengthen my bones.

I am 37 years old and it is a little daunting to hear I may have to take HRT medication to well into my 50’s, I do not usually take any medication, is rare i take paracetamol these days. The whole adventure has been like a whirlwind and overwhelming at times but i have to say that if I had to do it all over again I would do the same, compared to how I felt before the surgery I feel a hundred times better.

They said 12 weeks off work but I will be taking longer, I don’t know if it’s all I’ve had removed or the anxiety that goes with it but I certainly don’t feel ready and my abdomen continues to be tender, a knock in work would only set me back again so I’m gonna make sure I’m well enough first. Ideally I would like to have had my apt at the breast clinic and a trial of HRT before I return to work but we’ll have to see.

Recovery will be different for everyone, I’m at week 8 of recovery now, I feel fantastic (again compared to before the surgery) but I still have pain and still feel tired and get tired easily and when I over do things it sets me back a bit again. Mentally I’m worried, It’s all the “what ifs” like what if they didn’t get all the cancer, what if I have breast cancer, what if I can’t have HRT and I end up with osteoporosis, what if i can’t have HRT.

I have a different mind set these days I don’t feel empty like I thought I would but I feel different and more delicate. I’m gonna focus of getting better in my own time, if that means longer off work then so be it, you only get one life there’s no way I’m wearing myself out for someone else. Helen

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5 comments

  1. Hi,
    I’m totally new to this site and at the very start of my journey….. I have a large ovarian cyst (23cm) and have just been told I have to wait 4-6 weeks for a full abdominal hysterectomy. I look 6mths pregnant and have been signed off work. I feel very self conscious and have to wee constantly and at times urgently.
    Im scared of the opp and the recovery, I’m 54 and post menopausal and don’t have young children so I suppose I’m lucky that I have my husband and two grown up girls that can help me to recover. we are due to fly to Canada on the 26th June for a holiday of a lifetime, and if I’m lucky then I may get a date for the opp by the end of march. Am I being totally unrealistic to think that possibly we might still be able to go or should we think about cancelling…?????

  2. Hi Jan,
    Sounds all fairly positive and you appear to be staying strong which is great to hear. I hope you recover soon. I have gone back to work now on phased return I felt fully ready about 3 weeks ago, I was exercising on my gym equipment and doing tougher hill walking. Work bosses have let me down and caused me some anxieties and negativity but that’s another very long story.
    So I spose at just under 4 months I finally felt ready. Hot flushes have been increasingly worse, alcohol and stress appear to bring them on more than anything, iv Google searched this and it looks like it’s true. Not an alcoholic just like the occasional beer ? Still not on HRT, got my breast apt end of Oct and GP says after this apt I can start some.
    My wound is nicely healed, scar is red, people have advised bio oil, my friend used it on one of her surgical scars, massive difference compared with a scar she didn’t use it on.
    I find I have to wear big belly warmer knickers if I’m wearing jeans because can still be uncomfortable, anything that has buttons and zips digs in really, I try and stick to smooth, soft clothes. Around the wound can feel tingly /numb and still I little anxious about it, im particularly delicate and careful with my scrubber around that area in the shower. I was quite nervous when someone would try and hug me but that is much better now. I was always quite squeemish about it though.
    I think it changes you ,iv definitely become more outgoing and wasn’t to do more things ,things I haven’t done before .I feel more confident and perhaps even a little bit more mouthy which was never like me before ,don’t know if it’s a good thing or just a side effect of the menopause haha .

    Hope you’re doing well and keeping positive , would love to know how you’re getting on.

    Helen

  3. Hi Helen
    Thanks for your reply. Hope you’re doing OK. I’m about 5 weeks post op now. My scar is healing and I feel stronger. It looks like my work will support 12 weeks off but maybe not any longer than that. This would be combined with part time hours for a month when I go back. It’s an office job so I hope that will work out. I’m hoping I’ll be feeling fully recovered by then.
    I’ve had 2 cancers: the cyst itself which like yours had grown to the size of a rugby ball and also the womb lining. I’m not worrying about it too much as these have been removed. Instead I intend to get back to full fitness and build my overall strength so if anything does come back I’ll be able to push myself out of bed and get about better.
    I’m having a few problems like more hot flushes than before the op. But my main issue now is that my abdomen is incredibly sensitive. I can only wear loose skirts and it actually is only comfortable when I’m naked! Did you find this? If so how long did it last? I’m hoping the area will settle down so I can relax more in the next few weeks.
    All the best
    Jan

  4. Hi Jan, glad your doing ok.
    That does seem like a short course of antibiotics. I know a had 7 days worth and it cleared my infection right up which was a relief because it caused a burning sensation which at times had me doubled up in pain.
    Iv nearly had 12 weeks off work now but I’m still taking more, I don’t think you and I have had a typical hysterectomy and I think it will take longer for everything to settle and recover from the trauma, despite this there’s the emotional shock of being told you have cancer. I recieved a copy of a letter from the gynae/oncology team the other day and even though I already knew I had had cancer seeing it written down like that shocked me again.
    I would like another 6 weeks off work myself. I have been getting out more, building my strength but it’s still hard and I get tired and still there is pain when I do to much. I really don’t think you can rush these things.
    Take care

  5. Hi Helen
    Your situation is very similar to mine. I had the same procedure on July 23rd, so I’m now 16 days post op. My reocovery has been quite good and I spent 5 nights in hospital. The cyst had a rare form of cancer and I had the initial stages of cancer in the womb lining. I’m 54 and post-menopausal anyway so that hasn’t been too much of an issue.
    My main problem is that the wound has become infected. I’m going to my GP surgery about it and have been given more antibiotics. When I left hospital I was given 4 days worth of antibiotics. As soon as I finished them, the infection set in. Is it normal to have such a short course of antibiotics for major surgery with an 8 inch vertical gash?
    Apart from that I’m doing OK. Been signed off work for 6 weeks but definitely intend to take longer. Your thoughts would be gratefully received.
    All the best, Jan

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