Ovarian cysts or cancer?

[Kmartell7]

I've been having bad symptoms lately, they started after I had surgery almost a year ago, they are now much worse and are an everyday thing.. I have most all symptoms of ovarian cancer, almost pregnancy like symptoms. Extreme nausea, bloating, abdominal pain, very increased need to urinate, change in appetite, increased gas, bigger lower abdomen, pelvic pain, a very strong uncomfortable sensation in uteris area, very pressured feeling, and a pulsing sometimes,and much more... Does anyone else have these from just ovarian cysts? Or should I be worried about having ovarian cancer..? I also have endometriosis and have had a ruptured cyst

[Hidden]

I have had a similar scare, you need to be talking to your gynaecologist about these symptoms and you need to get your CA125 marker measured. Mine is high, and it almost stopped me from having IVF but CA125 levels can be high in women with Stage 4 endo with ovarian involvement. The important thing is to track them over time (every 2 years possibly). It is highly unlikely to be ovarian cancer.

I have had ALL the symptoms you describe, on and off for many years but it got worse following my 1st endometriosis surgery nearly 3 years ago. I had bilateral endometrioma, with one ovary pushed down to the pouch of douglas (recto vaginal cup de sac area) and my bowel left tube was twisted around it, swollen and stuck to my bowel and peritoneal lining. I had surgery for 2 hours to free ovaries, drain cysts, cut adhesions and much more.

Sadly, 3 weeks post surgery I suffered horrendous left sided pain, worse than before (which was pretty severe, believe me).. I was nauseated, throwing up, swollen, frequency, severe pain that painkillers did not touch.

I suffered for a year prior to getting a 2nd surgery, I should have pushed for it earlier, as you should now. It is not normal to be this ill but ENDOMETRIOSIS alone can and does make you this poorly.

On my 2nd surgery, it was found I had a huge 8-12 cm post peritoneal inclusion cyst which was so big it was putting pressure on all my other organs, and my bowel. My surgeon removed the cyst and performed histology tests on it to check for cancer - and luckily it was not. It was a septated fluid filled cyst and occurred as a result of my previous surgery. It was also stuck to my bowel, and my surgeon luckily cut the cyst away from the bowel without the need for a bag / stoma (which was a risk for me). This is why it is important to have a bowel surgeon involved if there is bowel involvement.

I had to resign from my job because of all the pain, nausea, and was even unable to walk on some days as the pressure rested on some nerves, and i was unable to stand on left leg. Leaving a good job in london after 13 years of hard work was sad, and i was even able to work from home all the time but i was not even well enough to do that, i felt that ill.

But my health had to come first. And yours needs to now as well.

Get referral back to your gynaecologist.. It is highly unlikely to be ovarian cancer, because that is very often painless until the latter stages, and with your history of endometriosis, it is most likely that. There is only a connection between 'A-typical endometriosis' and ovarian cancer and ATYPICAL endo is very rare.

My left ovarian cystic structure has grown back, and I can see the outline of it on my abdomen - but my CA125 levels, despite increasing, have not increased too much. I was due more surgery early this year but decided to get my CA125 tested and then go to IVF. IVF worked on the 1st round, early days yet and I have been quite unwell but it's all looking good at the moment. You can understand why i am cautious (despite another member on here yesterday telling me off via private message about my worrying - a lack of empathy is her issue). If she had suffered as I had, she'd be cautious too, it's natural and normal to worry after years of severe illness and multiple surgeries and infertility as a side issue served at the same time.

So I urge you to book to see your gynea again, ask for your CA125 to be measured, and for a transvaginal ultrasound. Your gynaecologist will be able to see whether your ovary is filled with fluid, blood or other tissue - so that should reassure you. But, you are in alot of pain so you need to have further surgery for your endometriosis. I recommend going to an accredited BSGE Endometriosis Center, bsge.org.uk/ec-BSGE-accredi...

When you have stage 4 endo as you do (if you have ovarian involvement you are automatically stage 4), then go to one of these centres, demand referral from your GP. The benefit of these is that as well as gynaecologists, they have colorectal surgeons and urologists, pain management nurses.

This disease is not just of the reproductive organs, it affects the bowel, bladder, ureters - and other areas too long to list here, as it has with me. I have endo on my ureters too.

But try to to worry, take control (although I know this is so tough when ill) and search for a surgeon at one of these BSGE endo centres. Your endo needs to be EXCISED, meaning cut out, not burned, as this does not get to the roots of the endo.

Sorry for the long answer but this is indeed a complex, painful and overwhelming illness so you have my thoughts. I am here to help.

Are you also considering fertility treatment after getting your symptoms addressed? Take heart from me, yes it is early days, as so many doctors have told me (because my results have surprised them) but after good surgery, is is possible to either conceive naturally (depending on tube health, mine weren't good and one was cut out due to hydosalpinx), or you can have IVF. I am nearly 40 so there is hope.

Take care.

[Hidden in reply to Hidden]

Hi I don't have endometriosis but I have had a cyst like you in the past and had it was a frightening experience resulting in surgery. I would go to yr gp's and push for a referral to rule your cancer fears out and to see what can be done to help you. It's not worth the risk and it sounds like you've been through more than enough and needs to be sorted quickly. It's not just your physical health but yr peace of mind. Take care and I hope you get sorted quickly. Xx

[Vickal]

There is a condition caled adenomyosis that has a lot of the symptoms you are experiencing. Not cancer you will be pleased to hear but very hard to diagnose. There's a fab website which offers support, advice etc. adenomyosisadviceassociatio... take a look. You do need to see a specialist to get some help with what your experiencing. The link that YellowRose provided is what I would recommend too.

Good luck getting some answers. Don't panic about cancer it could be a number of other things. xx