anyone else have all these things & have you had surgery yet?

Psoc,endo,7cm cyst on ovary and kink in bowel due to endo & ca125 test was 48

I was in hospital for a week after a night of pain worse than my labour. It started like the pains I always get when due on left side but then it got much worse with sharp shooting pains up my bum I think at that point I passed out with pain woke in morning and gp sent me to hospital they said could of been passing kidney stones? After tests ct scan MRI scan I was told I have 7cm cyst on right ovary (pain is always on left) they said I have endo I was told I had pcos in 1997. This was oct 2013 I'm due a op to remove cyst and endo and also part of bowel. I've been showing some things that made me think I was going through change bad skin sweats I'm only 38 so was tested for this, so when I got letter from the hospital this week it mentioned my ca125 level is 48! Which I googled thinking it was the menopause and got a shock it's the test for ovarian cancer can anyone help?

4 Replies

  • CA125 is one way to test for ovrian cancer markers- and is not very reliable for that, because the vast ajority of high results are not for cancer at all but are for endo.

    As you already know you have endo - that explains the result.

    It is no longer significant if endo is already confirmed.

    The only benefit to the test, regarding endo - is if you have not yet been diagnosed with endo and are struggling to cajole a surgeon to give you surgery to diagnose endo, then a higher result indicates either cancer or endo and this can speed up your operation date.

    Ovarian Cancer is exceptionally rare before the menopause - and the fact you now know you have endo fully explains your CA125 result as it does for just about all of us on this forum that have had a raised result. So you can ignore that result - it has no bearing on the battle ahead at all.

    My surgery was probably just as big but slightly different. I had a laparotomy -cut across the bikini line, 8cm endometrioma removed from pouch of douglas and detached from right ovary that was repositioned. Left endometrioma 6cm was removed along with an ovary and the fallopian tube. Smear test done, mirena coil inserted, extensive removal of endo by diathermy from many organs, several biopsies taken including cervix.

    Entire pelvic cavity stuck with adhesions which were cut back wherever possible freeing up the organs that were stuck together.

    Catheter inserted for a couple of days of my recovery.

    The result was about 5 months to get free of post operative pains and be able to lift a full shopping bag or a toddler without causing ouch. About 1 year to regain full strength of my tummy muscles again. 17 months to get my bladder working for itself (which is an unusually long time and usually only tkes a few weeks at most).

    But it was worth it in the end. It is a long recovery - and it is in the early weeks very sore to do much of anythng- especially trying to get on to and off the loo and go to do a poo, when you have not got any tummy muscles working. It is very sore and awkward to try and push a poo out using the back and leg and side muscles instead. It does take practise and laxatives to help too.

    But I am fully recovered from the op now, it wasn't entirely successful in that it didn't remove all the endo or couldn't in the time I ws in theatre, and the mirena coil has since given me a cyst that burst and another which is still there and causing me a spot of bother. But as I had 3 cysts in the months before the surgery, 1 of which burst, I am not entirely convinced this is down to the mirena, it could just as well be my own body letting me down.

    The surgery on the bowel - you will need to discuss with your surgeons. It could mean shaving off the endo or anything up to full resection of the bowel which is a double operation, but they should have a fair idea what they intend to do.

    Either way the result of the op will mean much the same in terms of toilet trips and trying to use the loo without having full strength tummy muscles.

    My advice for that is if the toilet is in a bathroom - put a small step ladder or chair next to the loo so you have something to lean on to sit yourself down and support you standing up again. Less easy in a box room toilet, but attaching a low handle to the back of the loo door might help if you can read that.

    Also have a towel rolled up or a cushion - to push in to your tummy to help you bare down and push poo out without hurting too much. like you roll on to the soft cushion. It helps too.

    Before the op - move everything you use regularly to waist height around th house so you don't need to stretch up to shelves or bend down to the floor. Both of which cause ouch.

    Get a flask to carry hot or cold drinks in, because everywhere you walk you will need one hand held on your tummy wound and one hand to steady yourself against a wall or furniture and this doesn't leave you any hands free to carry drinks safely. So a flask or water bottle is a great asset.

    Open an account with a supermarket that delivers to your door, you really will not be up to the long walk round supermarket aisles - even with someone with you, it is exhausting and sore, and you certainly will not be driving a car for at least 8 weeks maybe longer.

    It's not the driving forward that's the problem but the reaching back for a seatbelt, and looking over your shoulder to reverse and park. That tugs right on where the surgery was done and it ain't nice at all. it can knock the wind out of you to hve a sharp pang when you hve over stretched a healing muscle.

    The laparotomy cuts through 7 layers of muscles - it therefore takes a long time for those layers to all knit back together again and longer still to build up strength in those muscles tht you lost by not being able to use them at all for some time.

    I know it sounds daunting - but many of us have been through the big ops and we are here to tell the tale. It isn't an easy or comfy recovery - no ops are, but keeping exercising by every hour or two pottering aboutthe house and getting your circulation going is always a help and so is eating healthily - smaller portions than normal because you are not using up so much energy, but increase your hydration by taking onboard more water drinks.

    You can do this - and you will feel so much better once the op wounds are healed. Probably better than you have felt in years.

    Best of Luck

  • Thanks so much I'm new to all of this but been suffering for years was just scared with the ca125 test reading as my stepmother was told for 14 months she had kidney infections then only cause here mum kicked up a fuss was tested and actually had acute myeloid leukaemia??!!

    As for the bowel surgery that's the only bit I know what's going on I have a tight kink at the rectosigmoid junction and will need bowel resection? That's what I have to have but don't know what it means? As for gynae they want me to start taking cerazette I am not seeing endo clinic till 28/04/14!!! I was told in oct when being discharged from hospital I would have cyst removed and whatever else needed in 3 months!

  • Hi yes im the same ! Had severe left side abdo pain did blood tests showing CA 125 levels elevated so it went into panic stations ... Had loads of scans & tests which showed Endo, 5 fibroids, PSOS and a heameraging cysts on left ovary. I pee blood when im on n had vomiting and diarrhea when im on plus agonising pain ( bin like this for years) but because of my age & the additional left side pain went to the doc.

    Been put on progrsteron only pill since december and am still having regular periods which altho now arnt painful tend to last for 13-14 days which leaves me exhausted & run down.

    I wont have surgury as its not a cure, whatever they remove grows back & as the last comment testifies the recovery is long & painful with little benefit so i just dont see the point !!!

    You are not alone. Its sucks bit there are treatments that can at least make things bearable !

    Big hugs x

  • What about sweats do any of you have them?

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