I am awaiting laparoscopy to diagnose Endometriosis. I have a cyst on the left ovary which they have said may be a chocolate cyst.

[lisalovescake]

I have also been told it may be Tubo Ovarian Abscess as one doctor diagnosed me with PID and did not put me forward for laparoscopy then after being admitted for a week. My GP stIll believes it is Endo. They have told me they may have to remove the ovary and possibly tube but I want to hear more from women who've been in this situation please..

I am not comfortable with taking the ovary (I really would like to be a mum and ive heard if more health orobs when taking ovaries even if just one) but dont understand if it is necessary for my health and returning Endo etc. I am going to speak to my consultant again soon but want to get it clear the kinds of questions I should be asking before Laparoscopy in which they said they will diagnose and remove any Endo if it is there plus ovary if necessary.

I am 35 without children but trying.

Thank you everyone xx

[MMary-Moderator]

Hi lisaflanagan,

When I go in for my ops I always write down a list of questions about what they are looking to carry out, what implications that will have on my recovery as well as future life and I write down my concerns. You might find our laparoscopic surgery information leaflet helpful: endometriosis-uk.org/sites/...

Best Wishes,

M Mary, Volunteer Moderator

[lisalovescake in reply to MMary-Moderator]

Thank you so much for your reply that's very helpful x

[lisalovescake in reply to lisalovescake]

Hi everyone....I had my consutant`s secretaries email after my doctor told me to contact her about bringing laparoscopy forward since I've been waiting for 6months with worsening symptoms and worry of fertility becoming more damaged. Was originaly put onto priority list for op but doesnt seem to have been treated that way. I e-mailed the sec some questions about worries of removing ovary and whether they will cut or burn any endo they find. They sent me an appointment for the 18th April, two days before my laparoscopy to ask the consultant my questions. Does anybody know anything about these questions and how best to go about getting endo cut out instead of burnt as I've read it is best? Also does anybody else have experience or knowledge about choc cyst and having to have ovary removed or not....under what conditions should ovary be removed? I am 34 without children wanting to conceive and don't want them to take ovary if not absolutely damaged beyond working again but how will I know this?? I know it may be said that its best to take ovary away with cyst especially if difficult to remove the cyst from ovary but this has to be weighed up against pros and cons of leaving it if possible and my fertility...Just not sure what they're going to say or come across in a couple weeks time. I'm also having dye test done to check fertility at same time.

Thanks so much ladies xx

[Tillyfloss]

hi. How are you feeling today?

I've had chocolate cysts that were very troublesome. My local hospital had to do emergency surgery and we we're told afterwards that going forward I would have to have a hysterectomy and have the right ovary and tube removed.

I got referred to a bsge centre and the endometriosis specialist was amazing, he operated and dealt with the stage 4 deep infiltrated endometriosis as much as possible ( my bowel is covered and can't be helped but the rest he's treated) and he removed and did a full reconstruct of my right ovary. You have to make sure you are seeing a specialist in endometriosis otherwise I would have gone with the hysterectomy and lived to regret it.

I hope you have good pain management in place and support from family and friends.

cx

[Minchoo in reply to Tillyfloss]

You should get a second opinion as outlined by Tillyfloss. Have you thought of doing IvF privately? You can produce eggs with one ovary. Keep asking questions. I am 35 in the same boat as you but both my ovaries have cysts on. Going ivf and then thinking about surgery to try to save my ovaries. Xx

[lisalovescake]

Hi Tillyfloss and Minchoo, thanks for your replies. (Im sorry I've written such a long reply..if you could find time to reply me I'd be so grateful)

I am feeling slightly better today have managed to get a few things done thanks for asking. I'm so glad to hear you received better treatment than a sudden hysterectomy Tillyfloss. Minchoo gosh.. similar situation to me, fertility worries just adds so much more trauma to Endo?

I think in the near future I probably will have to try IVF but have to get through this laparoscopy on 20th April and receive diagnosis from it first and full fertility tests before that. They will do a dye test during this.. do you know if there are any more they can do during laparoscopy Minchoo? I don't know if I can afford private IVF sadly. Is your ovary reconstruction to be private if you go ahead? Tillyfloss was yours private or NHS? Do you know if this is something they will consider on nhs or they'd rather just take my ovary? Seems so wrong.

So laparoscopy is on 20th..couple of weeks away and it will be my first one...in order to diagnose Endo and they said will remove any of what they can if that's what they find and the cyst. So given that it is only a couple of weeks away until the op and given that I have a new appointment on the 18th Just before it to raise concerns about all this right before it.....do you think i should decline to remove it when k see them on 18th??? As I don't have time for a second opinion just this appointment to ask questions two days before I go in. It's my very first op and don't even know if I have Endo for sure yet but highly suspected and they just told me at first consultant appt that they may have to remove ovary with cyst that I have. Does anybody know what the implications will be of disagreeing with them to remove it at this point? I mean healthwise also I've waited a long time for cyst to be removed and diagnosis... will they postpone this lap because maybe they need to makesure of a better surgeon to not remove ovary? Im thinking i wont have specialist Endo surgeon at lap as it's meant to diagnose Endo for now but did say they'd remove what they can during. I wish theyd just do things then and there like be able to use exact surgeon i might need on 20th. I'm dreading waking up and being told they couldn't do anything yet after so much pain and waiting and fertility worries..everyday seems like having children could be more out of reach. It's like there is no urgency at all about my fertility being left to be damaged. At first diagnostic laparoscopy when they suspect endo do you know if im ok to ask for specialist surgeon since its not yet diagnosed but they HAVE told me they will remove what they can there and then.

Feel like given the fact I have no children yet and my age and making me wait a long time for lap with much worsening symptoms i should be able to have specialist surgeon to do things I need there and then instead of risking more damage to fertility and removing ovary that may not have to be removed.

I guess if I change my mind and say I don't want ovary to be removed then they wohld have to have a specialist surgeon at my op?

So confused aren't I?! So sorry for seeming all over the place... I'm still very new to asking the right questions and trying to makesure things are done correctly for me in context of sorting endo and fertility at same time asap as it's already a year since I first suspected. I can't afford any mistakes on their part or shortcuts read so much about it but I havnt known where to begin with them when I go to appointments.

Only two weeks before lap and don't know if I'm to tell them not to remove ovary or even if they give you honest reasons about why they suggest removing it!! I just remember they said if the cyst is too stuck to ovary they may have to remove that too. I know one will work on it's own but that could develop cysts in future and then what. I don't want them to cut corners and regret it later.

Think I'm repeating myself too!

V v sorry for rambling just felt massive worry and confusion at the moment.

Thank you xx