My Ovacome

Anyone had pelvic problems years after dealing with ovarian cancer?

Hi - I had ovarian cancer 20yrs ago and had uterus and ovaries removed, followed by six months of chemo.

All has been well apart from some stomach problems which have been diagnosed as being related to auto immune pernicious anaemia and type 1 gastric carcinoid.

I have been experiencing some strange symptoms over the last 9 months, similar to those you'd expect if you were diabetic, Various test have come back normal and I was referrred earlier this month for a CT scan to rule out anything.

This has shown up a pelvic cystic mass and I'm now waiting to see the gynae oncology dept to investigate further. I have read that some problems relating to endometriosis can present later on even though the uterus and ovaries are no longer there but am curious to know if anyone else has similar problems long term.

My regular CA125 blood tests are fine. On my last test I had a minimally elevated CA 153 result which is just flagged for monitoring. Other bloods are normal.

6 Replies

I am sorry you are having all this worry, I am thinking of you and send my best wishes x G x


So sorry to hear that you may have a few probs ahead but I cannot tell you how it has boosted me to hear that you had ovarian cancer 20 years ago!! I had a cyst removed last June which resulted in a temporary colostomy. After 6 months of chemo I was declared cancer free. Hair stared to grow - all good. In March had scans and tests to make sure all was good for my reversal.... that day was last Tuesday. Imagine my despair to wake in recovery only to learn that the surgeon had opened me to find strange seed like surfaces on my lower intestines. It was decided to do a biopsy.. this has shown that things have flared up again. I am gutted and so is my partner and family, friends. It means more chemo etc.... does this mean that for the rest of my life I will be in and out of chemo.. or could someone out there give me a glimmer of hope? Although 61, I am young at heart and still have so much to do!!!


Thanks for your good wishes. Yes I am alive and kicking after 20 yrs :-) Sometimes the gynae prof wheels me out and get's his students to guess my gynae history and delights in saying that I am proof that people do get through OC! I am lucky/unlucky in that I have a very clear idea when something isn't right health wise. The difficulty I have is getting the doc's to believe me :-( I had, what I now know to be classic OC symptoms but I was told I just had pelvic inflammation. I had a brief holiday and then steeled myself for another attempt at convincing the docs. I was lucky that there was a female covering doc who realised that my large tummy was not right. She sent me for an ultrasound; I was told me the results straight away, saw gynae the next morning then in for the op. 6 months of carboplatin (?) and then routine apps. The bit that I was irritated by was the fact that due toaccess difficulties they left the cervix in place. This has meant that I still require smear tests. These have been fun as the doc's/nurses always have difficulty in locating the cervix. In fact I've been asked a few times if I'm sure the cervix was left as they can't find it.

It must be frustrating for you to be looking forward to the milestones for colstomy reversal and onward recovery. I do hope that they come up with an acceptable and successful treatment plan and you get back into the swing of things. Just make sure you ask as many Q's as you feel you need and that you are satisfied with the answers you get. Returning your good wishes for a positive outcome :-)


Hi...I know what you mean about getting the Oncologist to take notice... mine is just the same.....I had recurring symptoms for well over a year.....before he took any notice..and then he said there wasn't much he could do other than attempt to shrink the tumour, but It won't go away... good news is it did go away .. and now I am in remission. :-) love and best wishes x G x :-)


Update: I managed to bring my appt with Gynae forward by visiting the dept and telling them that I didn't want 2 wks wait with this hanging over me. I was fortunate enough to be fitted in to see a consultant who was very nice.

She was less emotive and calmly explained that what she thought had happened was that although my notes said I'd had a hysterectomy and ovary removal it may not have been clear that the cervix had been left and the scan doc many have been confused to see this on screen.

I was given a physical exam, including a smear as I was at the 5 year mark and told that they would discuss my scan at their Snr Doc meeting and following that I would be advised that all was ok and back to gastro or that it might be as well to have an MRI to rule out anything and clear up some confusion from the CT scan.

She did say that there were some signs of 'diverticular' on the urethra. I've managed to resist researching this in any depth but it does fit with symptoms that I went to see gynae doc with in 2007!

Anyway I'm still feeling washed out and now have to wait 2 weeks to get the MRI scan out of the way. Unfortunately although I'd like to be positiive I rather think they will find something as I am feeling so rough. Will update when know.


Update: CT and then MRI confirmed that there is a cystic lession in the pelvic area. There's some concern it's a recurrence of the OC but this does seem unlikely after all this time. They found an additional cyst within the cervix remnant.

Proposal now is surgery at hospital specialising in gynae cancers. Have had a sigmoidoscopy as there is concern that the cyst is attached to the bowel. Not much else to say as I'm not sure what I'm dealing with at the moment. Will have a clearer idea post op!


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