Back in late 2015 and I had a cystectomy, few months later I was getting ready for my wedding and week before I had an ectopic pregnancy which I had to have emergency surgery to remove my tube. This is what I was told at least, I went to a scan a few weeks after and the ultrasound lady said I now have "kissing ovaries" meaning they had attached which I kind of expected as that's the nature of endometriosis and I've been told mine is aggressive. I believe I had another cystectomy done by the same consultant again, who told me after the surgery that he couldn't find the second ovary and that the kiss they saw on the ultrasound was just a cyst.
I thought I would try not to dwell on it and went ahead with my IVF, had a year on Zoladex before hand and then had three rounds two unsuccessful and one early miscarriage. I am now in a big queue waiting for another operation and I'm now worried my consultant may not have my best interests at heart, as he is also the private fertility consultant and wants me to use my last embryos after this next cyst removal. Which I don't want to do as I have argued with him that I feel I can't carry children having had at least a dozen early miscarriages, so I just don't know what to do ladies?
Meant to see him this Friday to discuss my surgery and I'm worried he might have been the one who removed my ovary and didn't tell me....
Spoken to some people locally about it and they seem to think I should have kicked off, I've just always excepted the suffering and just sucked it up. I have severe endometriosis and a shortened life expectancy because of it mainly because someone "took" my ovary without my permission or knowledge. What would you do?
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HarrietC
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You really need to speak up and change gynaecologist stop putting yourself upset to keep other people happy sorry you are going through this but you must go through complaints procedure or something
Get your medical records. They should shed light on who removed the ovary. And complain about it (if private check the complaint procedure). On the NHS you should find this on their website or you can contact PALs at the hospital in question.
Although complaining won't bring back your ovary it could stop it happening to other people.
Also with checking the medical records to check if there's any mention of the possibility of removing it. Like when you have a lap and they say possible other things that could happen, part off
Sorry to hear that you are going through all these. You need a better doctor ASAP. and if removal of the ovary wasnt mentioned in the consent form, then someone must be Sued!. You also need a fertility specialist that has your best interest at heart. All the best love
I'm really sorry you've been through all this. I totally agree that you should complain. I had a bad experience with a consultant and so wrote a formal complaint and was re-referred to see someone else. Due to the complaint, I think they hurried through the appointment too so it didn't mean that I then was back on a waiting list for ages.
It is awful that this has happened and they need to be made aware of malpractice so that it does not happen to others as well as sticking up for yourself too.
It also helped me to do it to feel a little more in control- esp as you have another op, you need to feel confident in your consultant.
A good consultant should also listen to your concerns and take these into consideration and not argue with your decisions about IVF options.
I bet though that when you check the consent you signed before the ectopic surgery there will be a clause saying that you give them permission to remove anything that could potentially be a problem. For instance, if your ovary was stuck to the ruptured tube and they couldn’t separate them so were forced to take the ovary too.
Why do you think you have a shortened life expectancy? Obviously two ovaries is ideal, but when one is removed the other one ‘takes over’, you don’t NEED two. And it certainly shouldn’t affect your life expectancy 🤔
If you loose an ovary the other ovary take over yes but it has limited life, so it is halved by taking all the work and also smaller from previous surgeries. My consultant has said I will go through the menopause probably by the time I'm 37. I am unable to take any HRT as there is so much risk of cancer in my family, so this will inevitably reduce my life expectancy. Most post menopausal women start developing lots of other health conditions because of a lack of hormones, I have thought it through and asked my consultant, he also indicated that my ovary was still present after my ectopic pregnancy today, so I'm sure it was in a cystectomy procedure.
I think you need to change your consultant. You say that you don’t think he has your best interests at heart, which is obviously a bad thing, but he’s also giving you very odd information. I had my left ovary removed about 25 years ago. My right ovary took over and everything carried on as normal, every month. I’m now perimenopausal, at 53. I can’t have HRT either.
I very much appreciate what you are saying about your family history of cancer, and there might be another reason for your consultant’s...pessimism. Lots of women go through menopause at a similar time to their mother, he might be basing his estimate on your mother’s experience. But purely from a gynaecology point of view, losing one ovary to endometriosis will not shorten your life expectancy, or bring menopause forward. It just doesn’t work like that.
Well I'm glad I told him today I want to see a specialist, the guys is a jerk and has been giving me all this shockingly odd information. I have had loads of blood test that count how many eggs I have, I know it a total guestimates but that's what he has been going on. My mum didn't start till she was in her 50's but by the time she was 55 she had endometrial cancer that had spread.
Thank you so much for your reassurance, I don't know what I'd do without this forum to chat on.
I think the support you get or don’t get from your doctors makes a HUGE difference. I have been so lucky with my gynae, she has been on my side throughout everything we’ve been through. I honestly don’t think I would have coped if not for her. And you’re right, these support forums are brilliant; endometriosis makes people feel so low and lonely and it’s great that we can come here and know we’re not alone 😊
So who did you see today? And is there a plan for going forward?
I live on the south coast so my consultant tried make it sound hard for me to see a specialist endometriosis consultant, I said I would wait as I need a cystectomy again, I have four brewing in my final ovary. I am hoping I'll receive a referral soon and my gynecologist said good bye yesterday, I'm pleased because I've had no luck since I've been under his care.
He said the closest specialist is in West London but he said they're was someone claiming to be a specialist in Tunbridge Wells which is fairly close but I said I want a proper specialist not someone just making claims (like himself I was thinking).
So hopefully a new chapter, a more cheerful one I dream.
Regarding the menopause/early menopause, just keep an open mind. There's a menopause support online group, the lady who created it is Diane Danzebrink. You could talk to her, explain your concerns about HRT, your life expectancy and she will give you the info and contacts you may need. Do it when you are ready. But, please be assured that the door of life will be open, not close. Lots of hugs.
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