My Emergency Hysterectomy- Andrea’s Story

I would like to share my story as my hysterectomy was such a shock and perhaps will help others in the same position. I underwent endometrial ablation in March after suffering extreme pain in tummy and severe bleeding for years. The operation I was told was a success and my periods stopped.However I never felt quite right after it and still had pain in abdomen and especially my lower back. I was tired all the time and just generally miserable.

In June I went to doctor in unbelievable pain and got sent straight to hospital. After tests and scans the next day I was told I had a massive cyst and was asked about cancer in the family! So imagine my shock when they said they could not rule out the possibility it may be cancer. I was told it would be best to have a full hysterectomy to prevent ovarian cancer. Such a shock lying all alone in hospital surrounded by medical staff and trying not to cry. Anyway the operation went ahead everything taken away except my cervix which they could not remove as it is stuck to my bowel.

Turns out my operation was not straight forward and took 5 hours to complete. It turns out I was riddled with endometriosis! ! All those gynaecological appointments and not one of them suspected or investigated endometriosis, so angry all those years of pain and lethargy.

So after operation attached to morphine press button to self administer. Was able to talk to visitors and felt quite good after operation and then the pain hit that night. The effects of the anaesthetic and the morphine yuk yuk. Catheter came out following afternoon and scary getting up . Was painful to walk to toilet and scared to go to toilet however wasn’t as bad as I thought was harder to walk.

Had the operation Friday and asked to go home Sunday much rather recover at home. First week passed in a blur of pain killers and sleep, oh and a terrible cough which was ouch on my stomach!

Second week felt bit better but still pretty immobile and still annoying cough ( apparently common ) ….staples now out which was no problem at all…still not wanting to look at wound but did eventually long scar but hidden. Had to take some senna to help bowels but toileting ok. Have had no bleeding. Third week felt awful sore and very tired.

My psychological frame of mind not good, think the shock of it all and the worry of still not knowing if I have cancer taking its toll. Find out at end of 3rd week I don’t have cancer what a relief.

Week 4 still exhausted and sore. End of week 5 and just begin to feel human again can walk better and feel bit better.

I am now week 6 and can do some housework and small walk however still exhausted mid afternoon. Have terrible insomnia since operation and night sweats. Waiting to see gynae for HRT. I’m sure the hysterectomy has been the right choice but I wonder if any others have had an ablation then ended up with cysts and a hysterectomy?

Update 25 August 2014:

Underwent emergency hysterectomy removing everything except cervix. 10 weeks post op the pain is almost gone unless I lift anything bit heavy or on my feet to long. Don’t take any meds. The only thing still struggling with is fatigue, really frustrating. Still not back at work but hope to return gradually.

Insomnia has been my biggest side effect however this may be due to surgical menopause or trauma from surgery or both.

Finally on HRT this was delayed due to my doctor not following up on surgeons letter grrrr!! The hot flushes have reduced considerably.

So to all the women who have just had their hysterectomy, hang in there it gets easier but please please rest when you need to, try set a goal to do each day to give you a sense of achievement. Do not underestimate what a major operation it is.

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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. Hi sal,
    My goodness what a time you have had! Thank you for sharing your story I really think it helps to have others share there stories. I was dismissed from hospital with no information on hysterectomy or what may occur, thank goodness for this web site. I am now 7weeks in and starting to be more mobile however having been plunged into menopause my emotional and psychological state is terrible. I also just found out I should have been on HRT but my doctor surgery never contacted me to get this started. I am assuming this has delayed my progress some what…
    I can understand the not wanting to go out I could feel myself getting like that so pushed myself to sit in car at weekend and my partner drive me anywhere , just to get out.
    I have read sage is really good for hot flushes.
    Stay strong and look forward!
    Regards Andrea

  2. I had my full emergency abdominal hysterectomy in mid December 2013 after a very similar experience to you Andrea. My heart goes out to you as I read your story! I had an endometrial ablation in October prior, after suffering 18 months of dreadful pain and continuous heavy bleeding, only to be told Cancer cells had been discovered. Everything was removed including Cervix. Being allergic to Morphine I had a very rocky road with pain relief etc and my first few days have been wiped from my mind where I was so poorly with reaction to the op, drugs etc. Although I was sent home on the 5th day I was backwards and forwards to the ward every day for checks for a further 8 days as my iron level hit the floor, my temperature hit the sky and my wound got infected! As I was still in very early recovery the walk to the ward every day took its toll!! Once my blood levels etc had improved all I did was rest. I’m lucky to have amazing husband, 2 grown up children(still at home), family and friends who did shifts so I spent no time alone for the first 6 weeks as I was so weak. Gradually I improved day by day but it took 3 months to feel ok to go out! I didn’t drive again until April 2014! I was given the all clear by Gynae in March but was shocked to be told when my op was done the Cancer cells had erupted into the wall of my womb and started to spread so had I of not had my op in December I was told by March I would had of been in trouble! Phew!! Because of the ‘ Cancer’ side of things apparently the layer of cells surrounding my womb also had to be removed. My op was 4 hrs! It upset my outlook on life and took me a while to feel more myself without the emotional breakdown that things could have gone so badly wrong. Sadly agoraphobia set in as I’d been home so long and my family and friends all worked with me to get over that! I had been asking my doctor prior to my Ablation if something could be wrong but didn’t get referred for 18 months being told it was just my ‘Change of Life’! (I am now 50!). I was told by Gynae after my op that I cannot have HRT because of the risk of Cancer so I take Red Clover and Evening Primrose/Starflower Oil capsules 3 times daily which helps with the hot sweats but some are unbearable especially as we have been having very warm weather lately! But I feel blessed that my nightmare is finally behind me and it has been since June that I feel I can start living my life again and feel like my old self at last! Reading your similar story touched my heart and I hope your recovery gets you back to where you want your life to be. This website has helped me all the way reading everyone’s different stories and experiences. I didn’t think there was ever a light at the end of the tunnel at the time as this was my first ever surgery and experience of hospital stay ( apart from the natural births of my children). I wish you and anyone who reads this a speedy recovery. It does happen eventually:))) Salxxx

  3. Hi Andrea,

    I too had an endometrial ablation however was still in pain over a year later and it began getting worse. I had a scan which showed a small fibroid. After seeing a new consultant and going through my options I decided that a total hysterectomy was my only option to ensure that the pain would go, I had injections for a while to make sure that stopping my ovaries from working would make my pain stop, which it did. In feb this year I had the operation and do not regret it one single bit. I am on HRT but my quality of life has dramatically improved, the first few weeks took a little getting used to what I could and couldn’t do and I’ve gradually built myself up to where I am now. My next step is starting to do regular exercise, which I’m hoping to join a gym in the next week or so!
    I hope you’re recovery goes well, Gemma.

  4. Dear Andrea,

    I had ablation and cyst removal in Sept 2009 and then total hysterectomy in Feb 2010. I have ovaries but no cervix. I would have liked to have kept my cervix but the loss of that I feel, is a small price to pay for the relief I have had since.
    My only issue left by totoal hysterectomy, in my opinion, is slight nerve damage to bowel, as like you, everything was stuck together or to something else. I do now suffer from ongoing constipation.
    I was back to work after 4 weeks but exhausted easily for a good while.
    My biggest achievement was to climb a 1600metre mountain in Italy in May 2010 – exactly 3 months after the op! took me a good while but I did it!!!
    I wish you well and continued good health.
    Jacqui xx

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