Just a little bit of help and advice please - My Ovacome

My Ovacome

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Just a little bit of help and advice please

Minibarr16 profile image
Minibarr16

Hello

I'm hoping it's ok to post just for some advice given I have not been diagnosed with Ovarian Cancer but have been having some tests etc. I guess I'm just looking for someone to help shed some light on a few things.

So...I started with spotting between periods about four months ago and suddenly started having a much longer cycle than normal. I've been having very watery discharge (sorry tmi) so much so it makes my trousers wet. Fast forward to two weeks ago when I realised that I was really bloated and had been getting progressively more bloated over the previous three or four weeks. I never normally bloat and even if I put on weight it goes on my arse and hips rather than tummy. I went to the GP and to be fair she was quite thorough and said she'd refer me for an ultrasound and I had some blood tests. My CA125 was 90 and so my scan was pushed through quickly. I had both a pelvic and internal ultrasound. The technician basically told me there was nothing wrong with my ovaries and I had an "abnormal" roof of my uterus but he thought that was down to two c section scars. I go back to the GP today and she says the report says my left ovary is lower and sitting in the pouch of douglas and there are adhesions attaching it to the uterus (I think)

I've been referred to see a gynae but that'll be ages as she says everything else is reassuring. I asked to have my bloods repeated today (two weeks from when they were done before) to see what the CA125 has or has not done. My GP has suggested she thinks it's endo. I've had endo in the past and the symptoms I'm having are not endo symptoms I've had previously.

Meanwhile my tummy is growing and is becoming quite painful esp. if any pressure is put on it.

Anyone have anything similar or can give me any advice where to go next. I don't have an inkling that something is really wrong but equally I know that this isn't normal for me.

I know you all have more than enough to think about rather than someone who isn't in the same boat so any words of advice no matter how small would be appreciated.

Many thanks

11 Replies

The only symptom I had was a bloated stomach that blew up and wouldn’t go down and after several doctors and a couple of A & E visits a doctor did the CA125 test and the result was through the roof. I was fast tracked for an ultrasound and CT scan but it was really the CT scan that revealed all. I had pain and an ultrasound a few months before to be told it was a burst cyst and nothing to worry about so I’m not convinced ultrasounds are totally accurate but I’m not wanting to scare you and CA results can be raised with endometriosis and cysts and fibroids so it could well be something non sinister. Bottom line is that you say you’re still in pain with your stomach so that is not right and you need to get to the bottom of it. My GP kept telling me I was peri menopausal and thankfully I trusted my instincts that she was wrong and it was more than that. If you disagree with your GP or feel you are being fobbed off, if try another doctor or go to A & E and say you’re in pain until someone listens.

Hi, listen to your body, ask for a second opinion asap. Hopefully it will turn out to be nothing but yr CA125 although not off the scale is above normal range. I hope someone listens to your concerns. Do let us know how you get on xx

Thank you so much for taking the time to reply. My ultrasound report apparently says no cysts but I haven't read it myself just through the gp. The other strange thing is that my pain is more right sided which is strange when it's my left ovary 'out of whack'.

Hi. It's better to get a CT done. Please do not depend on the USG as gospel . Not that a CA125 reading of 90 means the Big C but this coupled with bloating, it's better to get the CT done early. Wish you all.the best and praying that everything will.be fine.

Naimish

CT Scan is the way forward I think. Don’t wait.... if only to put your mind at rest.

Good luck.

Only bloated, extremely exhausted regardless of sleep. Ca 125 above 30, lost weight. Best wishes Liz

Get a CT scan immediately since your bloating is getting worse.That is the only way to find out and put you at ease.

I agree with everyone else - go back and beg, plead, or insist on a CT scan. If you keep going back and pestering, they hopefully will send you for one, especially given your increasing discomfort. It may all just be adhesions,but whatever, being this uncomfortable for months on end while you wait for a gynae appointment is unacceptable. And remember, the squeaky wheel gets the oil, so to speak - the more you hassle, the more likely you are to get what you need. Otherwise, if you've any money at all, get a pelvic CT done privately,though you may need a referral from your GP to organise one. My CA125 was never higher than 91, and I had OC and a tumour growing separately in the pelvis - I'm not trying to frighten you, because all mine showed up on the ultrasound, and the CA125 level isn't just related to OC, its an inflammatory marker, so it might not be that, more likely adhesions from your surgeries, but nonetheless, make a fuss...

Hi, your CA125, whilst not excessively high, it’s still above the ‘normal’ range, endometriosis can affect that reading so that may be your cause but I think you should ask for a second opinion in order to rule anything nasty out. Your scan has shown your ovaries are ok but you’re spotting, you have a discharge that’s excessive, you’re in pain and you’re bloated so somethings going on in there. I had both a CT scan and an MRI that, together, gave a really full picture of what was happening. You need more than an ultrasound scan to definitely to be really sure. Go back to your doctor and if she won’t push for an earlier appointment with gynae ask if somebody else can. Unfortunately OC is often missed and also misdiagnosed by GP’s .

I hope you get some satisfaction soon, let us know how you get on ❤️Xx Jane

Thank you all for your help.

I did a repeat of my CA125 yesterday and haven't heard anything today (so will take that as a good sign I guess?!) so on Tues (Bank Holiday here) I'll hopefully get the results. I'm assuming if it's gone down that really I shouldn't be too worried?

I would be "happy" to pay privately for a ct scan but I'm just not sure how to convince my GP that she should refer me. She absolutely seemed not concerned at all "was reassured by the US and CA125 can be raised for lots of different reasons" which is why I'm totally second guessing everything.

Had my repeat ca125 which came back as normal (don't have the actually number yet) the thing is I'm so bloated like I'm five months pregnant by the evening...

Feeling frustrated and not sure if it's just some sort of bowel problem...

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