Diagnosed with endo but pain in right ovary dire, Im obsessed that its Cancer

[fishingfilly]

In a nutshell, pains in abdomen, scan saw cyst and endo, lap last Oct, told endo to right ovary. 6 weeks later pain re-appeared.
Another scan showed shadowing to left and right but difficult to see what it was I was told. Given pain killers to take and last 6 months had pain handful of times, consultant was shocked.

got another scan in 3 weeks time - I have this niggling question in the back of my mind that its ovarian cancer

Hi filly
didnt want your post to go unanswered - it seems you've been through alot over the last year.

Im not a medic but have you had any other symptoms? I'm thinking along the lines of unexplained weight loss, bloating tummy, back ache?

well yes and no the pain makes you feel and imagine all sorts.

Ok has the pain changed over the last year? Is it managed by the painkillers well or is it getting worse?

Pain is the worst thing ever - so debilitating especially when it is ongoing. I can totally understand where you are coming from but try to stay positive.

pain has def eased but I take the pain killers before I get the pain ... my pain is very located and 90% during my period so on advice from consultant take the pk's as soon as I start my period to build up...so its difficult to say.

Im hoping the scan (it will be an internal one as well as ultrasound/abdominal)will put my mind at ease. I will tell them about my concerns...its a private hospital and the scan last time was very thorough around 45 mins (compared to last NHS one that was 15mins)

the scan sounds really thorough which is probably what you need to put your mind at rest. Dont be afraid to voice your concerns. Remember too that in many cases ovarian cancer is often symptomless for a long time (although not in all cases ofcourse).

It sounds like you are under being monitored which is good - the next 3 weeks will seem to stretch on forever though - always does when you are waiting for something. I hope you will have good news :)

thanks Hogs - are you a gp? seem to know your stuff?

Hi Fishing

You really ought to see a specialist gynae with up to date knowledge of endo; it seems that the one you saw was probably a general gynae. He may not have managed to clear it all out last time around.

Voice your fears certainly re cancer but I think your very understandable fears are groundless.

Sounds to me like you have a "chocolate cyst" on your ovary and that is certainly endometriosis related. These can be very painful indeed.

Are they going to deal with the endo surgically again; tablets are only a short term solution here.

www.endo.org.uk is a good website to look at.

Hi Attila yes in Oct 09 I was seen by general gyno, who said oh lets get you in, get rid of it and everything will be fine dear! When pain came back I googled, researched and found the endo.org site, found my own specialist endo consultant who is great, also corresponded with a couple of people who are under him so am confortable. He read my notes and said it wasnt even removed but the area was "washed out" he was shocked!

think Im just feeling a little vunerable at the moment not having a good time of late so bad things pop into your mind.

Interestly in 2009 I was told I had a small choc cyst on ovary but in July this year scan didn find anything not event a small fibriod they said they saw.

This time round I want all these things definately ruling out I will go with a list of things for the radiographer to look for - Gosh they'll hate me!!

hi fishing,

Your story certainly illsutrates the importance of actually finding a specialist who knows what they're doing. I was appalled to read what happened to you in your first paragraph.

Choc cyst is an endometrioma and is linked to endometriosis.

Are you still under the care of this specialist endo cons?.

Endo is a pig of a disease; you indeed have my sympathies as a fellow sufferer. In my case the endo was cited all over my uterine cavity.

Poor you - my pain is very predicatable and located so it makes me wonder whether it is endo but they say it is!

I get the pain 90% of the time around my period.

Yes still under consultant so see what next couple of weeks brings

I'm not an expert, but it sounds a lot like endo pain. It's extremely unlikely to be cancer, as ovarian tumours tend to be painless. Mine was (although fortunately it was also benign).

Hope you're not too uncomfortable today :)

Hi Fishing how are you today?

I am not a GP but i do know a bit about ovarian cancer through personal experience (my mother had it) so i read up an awful lot on it at that time!

Hi Hogs sorry to hear about your Mother.

~Im good thanks

Hi fishing thats good to hear.

I totally get where you are coming from - after Mum I was obssessed with every small stomach cramp and practically pestered my GP to the point of distraction!

fishingfilly - my wife had ovarian cancer 13 years ago and had an ovary taken out and chemo therapy before we had children. She had no pain. She had ovarian cancer but non specific symptoms such as IBS type bowel problems. We only discovered she had it by accident because there were so few symptoms other than not being able to conceive.

My wife had a scan about a month ago and a cyst was fund on her remaining ovary which sounds a lot like yours. We were/are very very worried like you are now because a shadow was seen not just a fluid filled cyst. She had no pain and her CA125 cancer marker was very low. She had a hysterectomy 2 days ago because the doctors did not want to take any chances.

The reason I am telling you this and being quite direct is because 'having a pain' does not mean you have ovarian cancer. My wife had no pain and yet she had ovarian cancer 13 years ago. She had no pain last month but she has a cyst that sounds a lot like yours.

Abdominal pain and ovarian cancer are not always or even necessarily linked. It could be many many other things and endometriosis sounds like the most obvious problem. You should have bene monitored much more carefully to avoid this unecessary worry. I am really surprised you were sent home for 6 months because my wife has been treated so promptly and monitored so carefully by the NHS.

Frankly I would consider getting yourself in front of an NHS gynae consultant. You should be given a CA125 blood test ASAP as that tests for the ovarian cancer markers altough it can be elevated by endometriosis too. The consultant may well suggest a laproscopy as well to confirm a diagnosis as well as biopsy.

I wish you all the very very best and please please try not to Google. I know it is hard not to but ovarian cancer is an extremely complex condition and there are many benign cyst types you may have.

Hi Been and thank you for posting. Im pleased your wife is well although she has suffered over the years.

To re-cap as not really communicated that well!

I went to see GP as was having terrbile pains each month to the point I was nearly passing out. Referred to gyno on NHS

Saw gyno, scan there and then which showed choc cyst to right ovary and small fibriod. Back to gyno within 20 mins who said it was endo but to confirm booked in for a laproscopy.

Had this and was told all removed, left fibriod as very, very small nothing to worry about. Everything else very healthy.

6 weeks later pain returned. Went back to GP to get referred back to consultant/gyno. then started to research endo, looked at UK site and found consultant which specialises in endo in my area. Corresponded with others who recommended him.

Decided to go private to see him but in a nutshell have managed to get to see him at a private hospital within 2 weeks but on the NHS

Scanned and it was very thorough and told fibriod couldnt see, shadowing to right and left ovary but nothing major...said it was very hard to see properly.

Consultant gave me lots of options with another lap being my last resort, decided to try the painkillers

back 3 months later for monitoring - pain killers doing the job, only pain once now. But consultant has booked me in for a scan (2nd one in 6 months) to monitor

I know the "scan person" - sorry brain not finding correct word - is a new person as the last one I had has retired.

So I will see what the scan shows, and ask for them to chek everything twice! I have the scan on the Monday and the follow up appt with the consultant on the Wedn.

I will also ask for the blood test I think.

I also don't think your symptoms fit those of ovarian cancer which, as Shineon says, doesn't usually present via pain. It seems much more likely that it's related to endometriosis, especially as your episodes of pain correlate with menstruation.

As far as I understand it, ovaries and testicles develop from the same structures in the embryo, but then differentiate in place and function. It's well understood that bruising to the testicles can cause intense pain, so it shouldn't be surprising when similar pain levels can occur in the ovaries, as attested by women who experience pain during ovulation. That's another pointer to it being endometriosis because of the timing of episodes of pain correlating with menstruation as the endometrial tissue will be responding to the same hormones as the uterine tissue. And considering that endometriosis is the condition of uterine tissue migrating outside the uterus, it's not surprising that such tissue can end up being attached to the ovary.

The CA125 test has the same problems as the PSA test for men, so don't rely too much on that. But it's worth getting done, even though it's not definitive, just as a reassurance that everything possible is being done to find out what's going on, and as a base line if needed in the future. If the diagnosis is endometriosis, I hope your specialist will be able to provide a suitable treatment plan. Endometriosis is a painful condition and one which I think is still poorly understood despite the impact it can have on women's lives.

Huggley - yes I have been diagnosed with endo, had a lap also to confirm. As its on both ovaries after much research and discussion with a great consultant (endo specialist) it best to leave the ovaries alone if I can manage pain, I am having regular scans to monitor spread.

will know in 2 weeks where Im at with it after another scan