complex ovarian cysts 3.8cm NICE treatment guidelines?

Long story but 3.5cm complex cyst found Jan 2017 on MRI then tranvaginal ultrasound end of Feb another complex cyst found on other side 3.8cm I was booked to have hysterectomy 2 months later with removal of cysts and endo .

Still not had date for hysterectomy and 3 gyne appointments cancelled and none booked at the moment. Had the CD125 test when they found cyst , told if I don't hear anything alls well.

Have contacted PALS to complain last Tuesday they have passed it to relevant department I've heard nothing, plus alerted gyne secretaries to situation heard nothing plus my GP asked for me to be seen urgently given an appointment and told GP I had one then cancelled it, so still no appointment my 30th May appointment cancelled now because I've been referred to colorectal department as need a colonoscopy before hysterectomy it seems, but obviously still need to see gyne and have cyst assessed pain and symptoms are awful :( , I also have adenomyosis and post ablation syndrome after awful NOVOSURE :(

Is there any NICE guidelines I can say about the treatment of complex cyst does anyone know? I know they use a watch and wait approach as it small but haven't been examined by a gyne since Dec but had the scan in Feb and just follow up chat and prod of abdomen bact then , at that point I could understand it as booked for a hysterectomy 2 months later so all would be cleaned out but now......... I have nothing it driving me crazy and I feel scared :(

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  • At my appointment i was told in exact words "as your cyst is over 5cm it has to be surgically removed. It would have to be removed in any adult, but someone your size (im the size of an 11 yr old) its actually huge." .. So im assuming its 5cm+. Unfortunately it is a long process, took me 12 months between diagnostic lap and complex surgery and that was with my team going in blind. (Had no prior colonoscopy like i shouldve done, or anything). They are snowed under and with cuts too! Theres no guidlines to complex surgery, only treatment needs to be started within 18 weeks and well the pill, painkillers, zoladex is considered treatment. Good luck! Hope it goes well!

  • Mine is a complex 3.8 cm cyst with a well circumcribed modular area 1.8 which is avascular in appearance I had an MRI in Jan then a transvaginal ultrasound in Feb then blood tests after this for my CD125 levels after that then was booked to have a hysterectomy with removal of endo and cysts Waiting time 2 months had pre op April 7th but no date for hysterectomy still I have not been examined by a gyne since Dec and not been scanned since Feb I am worried as have been left and sure that cyst should have been checked as hysterectomy has been delayed but really feel I need to be checked. I have e-mailed gyne secretary plus PALS and have heard nothing I am trying to find out the NICE treatment NHS guideline as sure that I have read they normally watch and wait with complex cyst I know it small but because it a complex haemoraggic cyst I really feel I need to be checked. My weight has dropped and pain is constant finding it difficult to empty bladder now and bowel very painful and needing the toilet constantly . I going to see GP tomorrow I think again.

    Cyst will be removed when I have hysterectomy and my surgeon is bgse and will be bowel surgeon present so will be able to work on my bowel but I feel I have fallen through the net somehow as don't understand why I now have no gyne appointments have had 5 appointments cancelled since Xmas and only had the ultrasound because I complained to PALS that the radiologist had written on the MRI results I needed an ultrasound and no one had booked me one.

    Hope you getting better now has your cyst been removed?

  • I understand your anguish i really do, but unfortunately it does all take time. My first surgery i was in for a whole 5 mins because the surgeon opperating was in no way qualified to touch me. You really dont want the same happening to you. It sounds like your gynae is just preparing for the worst. If he opens you up and finds out he needs a colon surgeon or urologist then theyll just have to close you up. Have you been diagnosed with endo? Endometriomas are a type of complex cyst and endo can raise your CD125. Maybe they are expecting stage 4 endo aka (complex surgery). I had to have a gynea, colorectal and urologist. I know youre worried but honestly its best that surgeons go in prepared, than blind.

    Surgery failed me. My left side is terrible even a few months on. Spent all last night tooing and frowing from toilet! One of my major flair symptoms! 😭 ..

  • Hi I have mild endometriosis and adnenomyosis but have to have hysterectomy because I had a novasure ablation before xmas and have been in severe pain since finally they've said i have post ablation syndrome so only cure is hysterectomy. I understand I need the colonoscopy as have had blood in my stools on and off for the last year so the colonoscopy is to check nothing more sinister as only had superficial endo on my rectum and nothing showed when I had sigmoidoscopy.

    I am just worried about the complex cyst as it should have been removed during hysterectomy which should have been last month. I'[ve not been examined by a gyne since Dec but had as scan in Feb which showed complex cyst with avascular nodule which is a good sign as no blood flow to nodule/tumor so shouldn't be anything terrible but symptoms getting worse have constant loose bowels so have lost alot of weight and find it hard to empty bladder now as so much pelvic pressure and can't walk far/ Am getting so fed up of waiting and no one checking me from what I can work out from the NICE NHS guidelines it seems if blood flow to nodule in complex cyst you need to be referred urgently but if complex cyst needs to be check at least every 10 weeks it's been alot longer than that so I'm going to contact them again.

    Your totally right I want them to be fully ready for surgery so glad to have colonoscopy before and am waiting for referall to see continence nurse to learn how to self catherise but just feel i need to be checked by gyne in mean time as have had pre op beginning of April, no appointments at all with gyne booked or or hysterectomy op date.

    Really sorry to hear your symptoms not improved do you have extensive endo when they finally did your lap?

    Mines all left side too it is miserable isn't it all the waiting. I've had 6 gyne appointments cancelled since xmas :( I know NHS is under alot of strain but have friend who had lap colonoscopy and hysterectomy in the time since my Novasure messed up think because i've been referred through A and E I'm not covered by 18 week rule :( She was referred through GP :(

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