Hysterectomy Stories

Hello everyone

I finally had my appt with the endo specialist centre today. As I have tried pretty much every treatment going, it has been agreed I shall have a total hysterectomy around September. I am to undergo an mri first to check my bowel, kidneys and bladder for any endo damage before planning my surgery. The reason being is I already have it on my pod and ureter, and I am showing signs of bowel and bladder endo, and I possibly have adeno. They want to ensure everything is planned right, and all required specialist surgeons are present.

I know there are risks involved with having a hysterectomy at 31. But I want to enjoy life when I'm young, and be able to properly play with and care for my 2 year old daughter. 

The level of care I got today was totally different to previous surgeons. I felt listened to, understood, and I know this is the right choice for me, albeit a scary one.

If anyone has any hysterectomy stories or advice to share, I would be so grateful.

Love and hugs to you all X x

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  • Hello, ive also been booked in for a hysterectomy, ive been diagnosed with adeno and endo, had some endo excused during my diagnosic lap, snd my hysterectomy is due on 28th July, I'm 39 so a few years older and have 3 children, are they leaving your overys in, my surgeon said a total hysterectomy and mine are staying as they are healthy and apparently they like to leave them in if they can,

    I think it's called a radical hysterectomy if they remove overies?

    It is a scary thought, but like you say you already have a life that you want to live and I feel the same, I'm far from living the life I want to atm, I do nothing most days as I'm just hurting to much, I can honestly say I'm counting gown the days 53 left lol.

    Good luck hunny,

  • Hi there

    Thank you for replying.

    I know exactly what you mean. I just have no life right now and it's so depressing.

    Mine is a total hysterectomy, womb, ovaries and cervix. I have endo pretty much everywhere. I didn't respond at all with zoladex, which is why a total is the best option for me. Leaving an ovary in would just keep feeding the endo.

    Best of luck to you, I hope it goes well X

  • Hi, I'm 10 weeks post op from major excision surgery for endo and total hysterectomy (ie uterus and cervix removed) for the adeno - surgery took almost 7 hours.

    My symptoms pre-surgery were: very frequent urination (every half hour with activity and every 2 hours when sitting still/trying to sleep), daily sciatic pain down the back of both thighs, daily nausea, daily headaches, bloating, stomach cramps, most days I felt like I was walking around carrying a bowling ball in my stomach, heavy and erratic periods and fatigue.

    Post-surgery the sciatic pain is gone, my headaches are less severe and not as common, the nausea is gone, my periods are obviously no longer a problem, the bowling ball feeling is rare but occasionally I still l feel it and I no longer need to wee so frequently (although I still probably wee more frequently than the average person but I had endo on my bladder shaved off so (a) this is still healing and (b) my bladder probably needs re-training as it's been so used to going so frequently.

    I still have some stomach pain and tire easily but my surgeon says this is to be expected at my stage of recovery.

    I kept my ovaries as my surgeon believes vehemently in persevering them due to the health risks associated with early menopause and using HRT. Unfortunately research indicates ovaries tend to stop functioning within 3-5 years anyway post hysterectomy.

    I hope this helps and that your surgery goes well. If you have any other questions please feel free to ask.

    Best wishes, Jo x

  • Hello Jo

    Thank you so much for your reply. Gosh it's like looking in a mirror, your symptoms pre op are like mine. Even more reason I need mri I think.

    Glad you are recovering well. Do you mind if I ask how old you are? I'm 31, so I'm young I know, but I need this surgery I think.

    Take care X

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