Unilateral oophrectomy following endo cyst diagnosis

Hi there I'm new to the forum. I am 32yrs old and have had endo type symptoms for many years. 18m ago I had my first lap surgery and was diagnosed with an ovarian cyst on my left ovary. It was not removed at this point. A few months after this I was admitted to a and e with abdominal pain. I was then request admitted to the gynaecology ward (different hospital to the original sirgery) and underwenta second surgery to try and remove the cyst. It wasn't possible as it was adhered quite badly and I had a bleed during surgery. A sample was sent away and came back as an endo cyst. I have since had pain pretty much as before. Following a consult with the third Dr it has been decided to remove the ovary (I've been down the hormonal and pain control routes). I'm now terrified not of the surgery but the side affects of loosing the ovary. Does anyoneone have any experience or suggestions to share. If so how do you feel afterwards?

Thanks in advance

Katie

8 Replies

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  • Are you under a bsge specialist centre?

  • No just gynaecology consultant at my hospital but have seen serval consultants over the last few years. I'm not sure where the nearest one to me is possibly Sheffield.

    Thanks for getting back to me

  • Hi Katie - I had both mine removed last August due to endo. At 44, recovered really well and felt fab until started hrt.... Pain now back albeit not as severe. I also have Adenomyosis so it may be that which is the problem or hrt is growing the remaining endo. The lap surgery itself was fine, keep fit an healthy before hand and gentle walking helped me. Hope all goes well and keep us posted. Julie x

  • Hi - general gynaecologists dealing with endo will often only concern themselves with the ovaries in the belief that this is the main place that endo affects. In fact the most commonly affected place is called the pouch of douglas behind the uterus but this is often not even looked at. Ovarian endo (endometriomas) usually represent long standing endo that will usually indicate endo elsewhere. Just addressing one ovary by removing it is not a thorough solution without considering the bigger picture. An expert in endo will work on the basis of carefully removing endo not your organs. I would definitely suggest you seek a referral to a specialist centre before going ahead and having an ovary removed in order to establish if it can be saved and whether you have other endo to be addressed. Have a look at my post on the treatment pathway and get back if you have any problems getting a referral which can be made by a GP. You have a right to this under NHS Choices. x

  • Thanks for the informative reply do you go back to your own GP for referral?. Also I followed the link to the bsge centres it showed one in Sheffield but then wouldnt load. Would you happen to know if there is still a centre there? I'm not sure whether or not to still go for the scheduled surgery but ask for them to just try and remove the cyst and definitely not the ovary. Sorry for the 20 questions

  • Yes, it is clear on the BSGE site under 'requirements to be an accredited centre' that referral is by primary or secondary care:

    bsge.org.uk/requirements-to...

    So if you GP says it has to be by a consultant refer them to this - take a copy. It is your right in England under HNS choices to be seen by a consultant lead team of your choice. We know you have endo. The Sheffield centre is still on their list so as far as I am aware is still one.

    x

  • Hi all, I'm jumping in as I am in same position. I'm awaiting lap from general gyny (whom I trust as much as i can). He doesn't know if he can save the ovary. My nearest accredited centre is Edin and 1) my gyny, 2) GP and 3) a specialist nurse on the helpline from the Edin centre say I can only get funding for referral there if initial gyny lap shows complications.

    I'm 48, my back and side pain is nagging but not severe. My bleeding is irregular but not terrible.

    I honestly keep wondering if I should have any surgery or just continue with 'watch and wait' . I'm on the waiting list for surgery after feeling torn (obsessed?!) by reading posts here that warn about endo spreading and organs sticking together and pain continuing even post menopause....

    And yet, I know my symptoms are generally mild compared to others. And I've had 2 kids....do I really need a lap (*gazes at navel in repetitive rhetorical spiral!*)

    -K

  • Hi Kira - we talked privately. Unfortunately you don't have the same choices in Scotland and you would only get a referral to a centre with confirmed severe endo. So that is out for you. Treatment is based on pain and if you are not in pain to speak of then there is a case for leaving well alone and doing exactly what you are thinking of - expectant management. Having organs stuck together is not actually in itself a problem if it is not giving pain. Adhesions tighten with time but don't in themselves grow and spread or infiltrate organs. You will only get pain if they are pulling on nerves and there will be many people who have abdominal surgery for any reason walking around with adhesions without knowing it. Some even have a frozen pelvis without any pain. Your endometrioma had remained the same size when we talked so this could indicate that your ovary is now declining given your age. If you had endo infiltrating an organ such as your bowel then you would expect symptoms such as severe pain and perhaps blood. Only you can really know if this is impacting on your life in a way that is adversely affecting your quality of life; this is the yard stick in considering surgery. It may not do any harm to have a diagnostic lap and have the ovary removed as long as the gynae knows not to go cutting away at your insides in a way that might cause loads of adhesions to form that might then go on to give pain that you don't currently have. x

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