Pre hysterectomy, looking for support – Lisa’s Story

I am scheduled for a hysterectomy in 2 days and I am freaking out! I have been doing some research, including reading stories here and often women take medication to shrink their fibroid tumors prior to surgery. I am now wondering why my doctor would not have me do the same.

My story is this, I have been having issues with heavy periods, abdominal discomfort and expanding abdomen for a couple of years now! I was feeling run down, depressed and miserable but kept putting off going to the doctor or addressing this situation, just kept saying I was not active so I was getting “fat”. Then I started to get an increase in discomfort after eating any food, even small portions and my abdomen would turn hard as a rock. Finally I went to my doctor to discuss this. She sent me to have a ct of the abdomen with contrast. The tech had me freaking out because he came back into the room with me on 3 different occasions to ask if I was “sure I wasn’t pregnant”!

2 days later my doctor calls to tell me that I have a very large fibroid tumor and over sized uterus and she scheduled me with an OB/Gyn for 2 weeks. I went in to see the OB/Gyn and she tells me that I have a fibroid tumor the size of a football! Its on front side of my uterus and is the reason for much of my discomfort and my expanding abdomen. She attempted to do a pap smear and stated that I was so “distorted” from the size of this tumor that she could not even get the pap done!

I am 46 and have had 3 beautiful children, she tells me that she would recommend having a hysterectomy and if my ovaries look ok, leaving them intact. Not only am I a 46 year old woman with this issue, but I am also a severe type 1 diabetic and have been for 35 years. I am so, so worried about this surgery, I am almost petrified. I am not sure that I can go through with it because I am frozen in fear, afraid of something going terribly wrong during or after surgery.
I guess I am looking for some support that I am making the right decision to do this surgery. Any information, experience or words of wisdom would be so appreciated.

***************************************************************

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.

10 comments

  1. Hi Lisa,
    I am just over a year post op..total abdominal hysterectomy with both ovaries taken too. At first I’d gone to the doctor after a period which seemed to have stretched o Dr two months,ebbing and flowing .They found a fibroid about 10cm big. As there was no significant discomfort,I chose to have it monitored, as, apart from the bleeding(which had started to subside) I felt pretty well in myself…none of the characteristic pain,discomfort,or interruption of urinary or bowel functions,and the fact I had just started a new job and was still in the trial period,I really didn’t want to upset the smooth running of my work pattern.
    However,during investigations,a biopsy was taken,and revealed some suspect cells,possibly cancerous,possibly not,but the only way of knowing for certain would be to remove the uterus.
    I therefore went for surgery feeling as though I had everything to lose, I felt healthy and well,and if things went wrong,it would have been a disaster!!!
    My fears were unfounded….I was in hospital for two days,off work for eight weeks and phased back over four weeks to full time work.
    My advice is go for it!!! It is lovely not having to worry about flooding on your period, and not having to worry over when the next one will pounce. Absolutely fab to be able to wear white trousers with confidence,and not being wiped out through excessive blood loss.
    The best fount of advice was the Hysterectomy Association booklet “101 hints for a happy hysterectomy”….brilliant advice and tips…
    Oh,and I had the best news in that there WAS cancer there,but they were confident that all had been removed…and my boss was a Stirling bloke about me having to take such a lot of time off so early in my time there!!!
    Best of luck!!!

  2. Hi Lisa,
    I am just over a year post op..total abdominal hysterectomy with both ovaries taken too. At first I’d gone to the doctor after a period which seemed to have stretched o Dr two months,ebbing and flowing .They found a fibroid about 10cm big. As there was no significant discomfort,I chose to have it monitored, as, apart from the bleeding(which had started to subside) I felt pretty well in myself…none of the characteristic pain,discomfort,or interruption of urinary or bowel functions,and the fact I had just started a new job and was still in the trial period,I really didn’t want to upset the smooth running of my work pattern.
    However,during investigations,a biopsy was taken,and revealed some suspect cells,possibly cancerous,possibly not,but the only way of knowing for certain would be to remove the uterus.
    I therefore went for surgery feeling as though I had everything to lose, I felt healthy and well,and if things went wrong,it would have been a disaster!!!
    My fears were unfounded….I was in hospital for two days,off work for eight weeks and phased back over four weeks to full time work.
    My advice is go for it!!! It is lovely not having to worry about flooding on your period, and not having to worry over when the next one will pounce. Absolutely fab to be able to wear white trousers with confidence,and not being wiped out through excessive blood loss.
    The best fount of advice was the Hysterectomy Association booklet “101 hints for a happy hysterectomy”….brilliant advice and tips…
    Oh,and I had the best news in that there WAS cancer there,but they were confident that all had been removed…and my boss was a Stirling bloke about me having to take such a lot of time off so early in my time there!!!
    Best of luck!!!

  3. Hello, your story is so familiar to many. I am 45 and had full abdominal hysterectomy 4 months ago with very similar symptoms to you. It is only now that I realise how poorly I felt for so many years, putting up with bloating, discomfort and awful periods that kept me stuck in the house in some cases for several days.

    I can truly say that the operation has changed my life completely and in such a short space of time. It’s true what everyone says, take it easy and listen to your body in the early days after the operation and you will heal quicker.

    I am now back at work and can say that I am really loving my life.

    Good luck and please don’t be scared.

    All the best, Vickie x

  4. Hi Lisa ,
    I wouldn’t worry re shrinking of fibroids etc .i am 43 ,one child and I was suffering for years with heavy periods ,looked pregnant etcetera .
    I has a total abdominal hysterectomy on 22/1/2014 and it was the best thing I ever did .my scar was extended as my uterus and multiple fibroids were huge .1 was the size of an 18 week pregnancy ! Boy was I glad to be rid of them .
    Honestly it will be the best thing you ever done and you will feel like a new woman.i know I do .i wish I had of known and I would have done it years before .
    The lead up to the surgery is worse but on the day I was very calm .it can be sore but just ask for the pain relief and I had a bit of trouble with constipation but it was easy sorted .
    Don’t despair ,just go for it and you will be fine .honestly ,the hysterectomy is very liberating ,no more periods ! Yippee !
    All the very best
    Take care
    D xo

  5. Hi Lisa, Aw I do feel for you. It’s exactly 12 months today since I had my hysterectomy and removal of two fibroids, one was the size of me being six months pregnant. Like you, I had been having many issues. I had really painful heavy periods, the hard abdomen and bloated feeling. It affected my bladder, bowels etc and made life very miserable. 

    I’m 51 now and unlike you didn’t have any children so it was a difficult time, I knew something had been wrong for a while and kept putting it off.

    You are bound to feel scared but I can honestly tell you that it is definitely worth it all. The run up to the operation is the worst bit, honestly. Once the day of the op arrived I was quite calm. The op was a bit more tricky than first though as the fibroid was stuck to my bowels and my ovaries were also stuck to my bowels so they had to be left in place, (a blessing really, so no instant menopause). The pain after the op wasn’t as bad as I expected and the hospital manage your pain so well, I was in hospital 3 days and felt well after two days. I followed all the advice about taking things easy and not lifting, I quite enjoyed the taking it easy bit! I read all the stories and advice on this website and it really helped me, the support is fantastic!

    Here I am 12 months on and feel blooming fantastic! Best thing I’ve ever done, I keep pinching myself coz I can’t believe there is no more painful periods and all my other associated problems have gone, it’s fab!! 

    Wishing you all the best for your operation, you won’t regret it xx

  6. hi,i had my op a year ago on tues.i had fibroids which i didnt realise and had just carried on as usual putting up with awful periods.it was only when i couldnt get up one morning i found i was severley anemic and was told i need a hysterectomy.i freaked as i have never been in hospital but my consultant was lovely and let me try the injections first but they didnt shrink it enough so the op it was.i had tah and i was petrified and not the best patient before the op but i have to say my care at blackpool vic was outstanding.every member of staff was so patient and caring.now i am glad it was done as i really dont miss the periods.i would advise to read as much as you can on here as its has more info than i got from anywhere else.take your time in your recovery dont try to rush it.take care.

  7. Hi.

    I’m Helen, I went through a total abdominal hysterectomy 7 months ago.
    I don’t have children. I came to grieve and still do that I’ll never give birth. My pelvis was small I had suffered pcos since 17 heavy periods. Endometriosis the whole lot. At even my age I know that if you work yourself up, you will end up sick. I needed my ovaries in to help what’s left of hormones to keep my bones stronger. Sorry I won’t give you advice. I know sounds harsh but here is why. Everyone is different. Hysterectomy is a last resort, I’ve been there when my doctors was not listening until I put my foot down and met what I believe was my gyne putting me out my misery.
    I joined as Linda is brilliant. Supportive doesn’t tell you what she thinks but provides information so you can get right support.
    I’m sorry what your going through, it’s hard and sometimes I rant on a computer it comforts me. You have been blessed with 2 children. Something most women don’t get.
    I will say this please do not read stories, let people tell you things, my moto. It will either make you or break you.
    Either way you and only you have to make that choice.
    Of course you will be in agony for a while I won’t deny that. I also suffer bipolar. I was however determined to stay in a positive frame of mind. This allowed me to get up second day walk few steps this helps straighten your back.
    Please I plead with u to not listen horror stories or frighten yourself you have support on here the right information where Linda is not saying this or that will happen. She is guiding you the right info.
    I sincerely hope this has helped. I hope you are well soon. I really do.
    I would like when your well to write back and share what you felt.

    Xxx

  8. Thank you for sharing your story. I am 28 years old and 9 days post-hysterectomy, appendectomy and removal of a 22cm tumour on one of my ovaries. I too looked very pregnant! It is perfectly nature to be scared about your operation, what I have been surprised about however is how much better I feel in myself since the operation. It sounds like your tumour was very large like mine and carrying that around for me plus all the constant bleeding and abdominal pain was extremely draining. Now, although I get tired easily, I can think much more clearly, the bleeding has stopped and I have lost 2 stone 4lb in weight! Everyone’s post-op experience is different; I hope yours is as beneficial as mine has been and I wish you all the best.

  9. Dear Lisa,

    I am 46 as well and was absolutely petrified ahead of my hysterectomy (LASH) last June. And I did not even know beforehand that what was planned as a 30-minute-routine-surgery would turn out to be a three-hour-difficult-procedure (there were issues from a previous op and the largest fibroid was 25 cm in diametre).

    The first feeling I had right after surgery was that of huge relief and this feeling persists. I really only noticed how the fibroids had impaired my everyday life, once they were removed. (Although you should take ample time to recover post-op!)

    I did some research on the “fibroid shrinking pills” when I was first diagnosed with fibroids and there seems to be an array of side effects. In fact, I tried everything under the sun to remove my fibroids without surgery, as having a hysterectomy to me means involuntary childlessness which is quite a heavy cross (you will fortunately not have to bear).

    In short: my experiences with the hysterectomy / fibroid removal have been very positive and I wish I had made the decision pro surgery earlier.

    I wish you all the best and a speedy and well cared for recovery!

  10. Hi Lisa
    Please don’t worry! I am 31/2 weeks post op – I had huge fibroid too – all went well and they managed to do the op vaginally . The whole experience was so positive for me – it is so nice getting rid of all that ” pelvic congestion” I felt like I’ve been pregnant for 2 1/2 years!!
    Keep calm, keep well hydrated and regular post op healthy snacks .
    I was home 24 hours after my op.
    Get lots support from those around you after the op – rest lots and don’t lift anything.
    Good luck – hope it goes well x

Leave a Reply

%d bloggers like this: