Post menopausal .. suspected OC what was your pain like prior to diagnosis

[diww1]

I can’t find out if I have OC due to other heath conditions I can’t have any surgery .. I have history of ovarian cysts prior to menopause. I am now post and 56 years old. I was diagnosed with IBS last September after admission to hospital for something else, when they found the ovarian cyst by chance as I was in so much pain after a colonoscopy .. it must of “bothered” the cyst .. it was 5 x 4 cm in Sept 2018 .. I had a scan this March and it has grown to 5.8 x 4.3cm it looks like a simple cyst but I have many OC symptoms 48-96 hot flushes a day .. gynaecology PAIN it’s been worse last 2 - 3 weeks it’s awful .. I know chemo can cause sweats and night sweats but what was you pain like prior to diagnosis and any one have sweats and bowel Chang’s that was said to be IBS .. it took 55 years for my bowels to change I don’t think it’s IBS I think my cyst is malignant

[Purple-iris]

Sorry to hear you are in pain, whatever your diagnosis this needs sorting. If you’re in the U.K. you can ask for a second opinion. I would also go back and ask for improved pain relief and if it is severe go to A&E.

My only symptom was needing to urinate more frequently, I didn’t have any pain and my abdomen swelled up over 4 days whilst on holiday so ended up with an emergency laparoscopy which found the tumours.

Have they tested your CA125 ? It’s a protein in the blood that can be raised and is an indicator for some women but not all.

Unfortunately dIagnosis of OC is not always straightforward and often involves a biopsy or investigative surgery.

As you have other health conditions it may be useful to ring Anna on the Ovacome helpline and she could advise you of your options. She is very knowledgable and can also advise as to how to get a second opinion if needed.

Hoping you are able to get some answers and discount OC to put your mind at rest and also get effective pain medication until this resolves. Remember in the majority of cases the cysts will not be cancerous.

Good luck Kim x

[diww1 in reply to Purple-iris]

Thanks Kim .. my CA125 is 23 but as you say it doesn't always proove accurate in all cases .. I really can't have surgery .. I have a serious blood condition and am very overweight in poor health sedatary for 20 years plus .. I have bad health .. I had done tiny bowel polyps removed 2-5 mm and lost 4 and 1/2 pints of blood .. I can clot with blood disorder but it can cause sudden bleeding too .. there's no agreed golden standard of how to treat us with this awful blood condition.. I've had DVT lung clots brain clots and in the past year 3 major Rectal hemorrhages ... It's too risky to touch me .. pains not less today .. I hope things are going well for you x

[Purple-iris in reply to diww1]

Oh I’m so sorry you are dealing with such a number of serious health issues at such a young age. Your CA125 along with indications from your scan sound encouraging for not being OC but I’m not sure how they would tell without a biopsy and I’m not a professional.

Please try to speak to your team about getting more effective pain relief if they can’t investigate further so that you’re in less discomfort.

I’m doing well thank you had a shock stage 4 diagnosis almost 3 years ago needed chemo and surgery so has been a rollercoaster but very lucky to still be here.

Hope they can help with your pain and you start feeling more comfortable.

Love Kim x

[Purple-iris in reply to diww1]

Meant to add this incase you want to chat with Anna.

Kim x

Ovacome support line is open 10am-5pm Monday-Friday, on 0800 008 7054 or [e-mail]

[diww1 in reply to Purple-iris]

Thanks for that x

[Lindaura]

I agree with everything Iris has said.

Sadly, some women have a long and painful wait for a correct diagnosis.

I was lucky, although my cancer was very advanced before I had any symptoms, but my first symptom was diarrhoea. A week later, swollen belly, diarrhoea and vomiting, I was diagnosed with Ovarian Cancer.

Best wishes,

Laura

[diww1 in reply to Lindaura]

Bless you that doesn't sound like fun at all. Please see reply I've left above for Kim .. I am so risky for any surgery .. I hope you are doing well now x

[Neona]

I did not have any pain. I had inflammation which was diagnosed as polymyalgia, anaemia and later had nausea and slight but persistent diarrhoea. Eventually couldn’t eat. Was diagnosed stage 3c clear cell ovarian cancer 2 years after the inflammation started.

[diww1 in reply to Neona]

Bless you I hope uiu are ok now .. thank you for sharing your experience x

[Lyndy]

Hello I was told that it is unusual for IBS to develop in post menopausal women if they have not suffered it previously. This doesn’t mean that you have OC but if you are being fobbed off , as others have said make a fuss and get a second opinion from a specialist xx

[diww1 in reply to Lyndy]

Thanks for that .. the gynacologist duevt say u gas IBS it was a ward doctor when I was in for something else in Sept last year I had ovarian pain so they did an ultrasound and found the cyst .. they can't biopsy or remove it .. so no matter who I see they won't be able to be sure .. only time will tell if it's cancer x

[bamboo89]

I had no symptoms at all of ovarian cancer - just found a very large lymph node in my groin. When they biopsied that, it turned out to be stage 4b cancer there,in the ovaries,fallopian tubes,a separate tumour on the pelvic wall and spots of cancer all over my bowel and omentum. And I noticed absolutely nothing, other than increased urinary frequency (normal for post menopausal women anyway). and certainly no pain. Hot flushes I had every 2 hours 24/7 from the age of 47 right up to 64, then I got longer gaps between them. But I did notice when I lost weight around 64 that my hot flushes were nowhere near as frequent nor as bad - for me, there's a connection between over eating, being heavy and having hot flushes. I also notice that a sugar hit (chocolate bar or cake) may trigger hot flushes, so there seems to be some connection with sugar too. Now I'm so skinny cos of the cancer and rarely eat anything sugary, hot flushes are just occasional, always one or two during the night, or more frequently day and night if I eat a very large meal.

[diww1 in reply to bamboo89]

I hope you're ok now .. so we're your hit flushes due to the cancer or being post menapause .. I had none in menapause .. then on 1 Dec 2017 they came every 15 to 20 mins and have carried on since .. it is a concern as I has none during menapause ..

[bamboo89 in reply to diww1]

No my cancer hasn't gone, I'm living with it - my oncologist said hot flushes are not particularly associated with ovarian cancers when I asked her. And if they were, mine wouldn't be improved now either, given I've still got cancer.

In your situation, with a CA125 of 23 being well within normal range, I really wouldn't worry about whether you have ovarian cancer, especially since you can't have any surgery anyway. I could be wrong about this, but aren't ovarian cysts associated with possible hot flushes?

[diww1]

I am sorry you've still got it .. and hope you can get good treatment and support .. because I've gone through menapause I am not ovulating .. my gynacologist said it's a non functional cyst and they can't tell if it cancer without it being looked at and i can't have it removed .. it's a risk even if it's not ..due to risk of bursting or twisting or blocking bowel .. it's also very irritating and painful but I must learn to live with it x

[delia2]

What about a PET scan? That will show cancer anywhere in your body. They’re relatively expensive and in the US harder to get approved but since you can’t have surgery it seems necessary.

[diww1]

I may ask as my pain is a concern I don’t think it’s IBS they may remain we can’t operate so why pay for a PET scan .. but I need to know x