Oopherectomy dilemma - ovary removal stories please

Hi Ladies, would anybody who has had this operation be able to share how it went, how you felt afterwards and how it affected your life generally, how the hrt has worked, as well any effect as your endo?

I'm 42 and don't need ovaries for fertility reasons but confess the idea of removal disturbs me irrationally for some reason. It does seem though that I am severely ill and simply may not have much choice in the end.

Hearing others experiences would really help me get my head around things. Tia for your stories....

My background: After a laparoscopy diagnosis of Deep RV Endo ( a single 2 cm nodule) in December I've been in discussion about surgical next steps. Initially I was told I'd need excision. After further bowel investigation though I've been told it's high risk as bowel is attached to the cervix and distorted and was instead recommended a zoladex trial with a view to possible oophorectomy BLO and tubes if it works. I've agreed to this trial and took zoladex round 2 yesterday. So far it is not going all that smoothly side effects wise. I am generally not in great pain though my fatigue is off the scale and hard to cope with and sexual intercourse with hubby is a past memory now. I have bladder issues that are disruptive, my bowel despite being the cause of it all is not problematic though I am occasionally straining when I used to be a cup of tea and go girl ( apologies for the tmi). I am post operatively experiencing more pelvic pain than pre op. I have a coil in which has stopped my periods.

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  • I've just had an oophorectomy but my RV endo was excised at the same time (it was similar size to yours I think - 2.5 x 3 cm). Obviously as you know I had this carried out as part of a much bigger surgery.

    I personally would be asking a lot of questions about what happens with the RV nodule if they leave it behind, in terms of future surgeries, and I might also be looking to try and see another specialist and get a second opinion. It seems odd to me to take out healthy ovaries and leave diseased tissue behind (I assume the thinking is that they want to put you in menopause) but I'm not a doctor so I don't know if this is the right thing.

  • They are saying it's a high risk op, I don't know if that's unusually high risk even for bowel or just normally high because it involves the bowel. I saw the Colorectal guy and he seemed keen on me having hysterectomy which I don't think the Endo guy is so keen on ( at least it's not been put on the table to me) so it may be an accessibility issue as my nodule is low and attached to cervix. Or my surgeon just trying to give me options as I experience a-typical symptoms.

    My pain is moderate compared to many here if you judge it be painkillers, but other symptoms very intrusive in quality of life . I believe the theory is if oestrogen driven inflammation is the driver of my symptoms it could be tackled that way but not possible in all cases. I am doing a zoladex trial to see if that is the case with me and I know it may not be and the surgeon is open minded and working with me on options.

    It's not impossible the recommendation or joint decision becomes both as with you.

    Above all I really want is for the exhaustion and enfeeblement to end, I can't live like this.

  • How are you feeling about the Oopherectomy, has it bothered you?

  • It does bother me TBH and when I was trying to get my head around the surgery that was the thing that I struggled with. Not because of the fertility aspect, as I didn't want more children, but just in terms of what it would do to my overall health. I was terrified of turning 60 overnight when I'm still in my 30's. But when it came down to it, I had no quality of life. It was just a constant cycle of painkillers and laxatives and fear. I had tried pretty much all the drug treatments and none of them had given me relief for more than a couple of weeks. I still feel like myself now it's done, and so far my worst symptom is the flushes, but I was having those anyway due to prostap.

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