Did you have a blood test to see your levels of CA125?  Your symptoms could be several things although it is fair to say that Ovarian cancer can be missed at times for example my one sister was told she had diverticulitis and also IBS at different times before she was diagnosed. I know it seems like a long wait before the ultrasound scan but it will provide some answers for you. Try not to worry but don't be shy of speaking to your GP again before the appointment.

Thank you for your reply DarkerDays and I'm sorry to hear about your sister. I do hope she is doing well. 
I didn't have a blood test. I did wonder if I should go back and ask for one whilst I'm waiting for the scan, but I'm worried that the doctors will see me as a bit of a worrier and I feel like I'm wasting their time. The pain does seem to be getting worse. 

Morning bumblingbee, Your worries have compelled me to write my first post this morning.

dont ever feel link you are wasting your doctors time. You know your body the best and if you haven't had a ca125 test, ask for one. Please also keep in your mind that it is very rare at your age to be diagnosed with ovarian cancer at your age, and there could be lots of less serious conditions that are causing your symptoms. 

i must say I had been back and forth to the gps multiple times over a period of at least a year with an array of different symptoms - bloating, back ache, going to the loo up to 30 times a day, skin changes, bowel changes, and haywire periods, and it wasn't until I saw the  post menopausal lady doctor that she actually did a pelvic exam and refered me. The first thing she did was ca125 test.

I was referred by my GP in may last year for an ultrasound, as she felt a pelvic mass during an examination. I was fast tracked to the gynae clinic, had a uterine biopsy (hysterocopy) which was reassuring, and the scan showed an 8-10cm dermoid cyst.

they wanted to operate in June to remove it, but given that it didn't appear urgent, I asked the surgery to be early August so I didn't have to rearrange family hols etc and miss Glastonbury.

the surgery date came, I was starved for 24hrs, and had been gowned up ready to go to surgery when the consultant came and cancelled it at 6.10pm, I really wasn't amused as you can imagine. I got referred into a private hospital as an nhs case as I wasn't prepared to go through that again, and the consultant was lovely.

i had my surgery on 19/12 and when I came round, the theatre nurse told me that she didn't take the cyst after all, due to it being more than double the size that had been identified on the scan! When she came to see me after the operation she said that I need to go for more complex surgery as they were unable to do it keyhole, and she needs a bowel surgeon along side her. She was taken omentum biopsies, fluid biopsy and peritoneum biopsy in the meantime. Not the outcome I was expecting.

I heard from my docs Friday to say she had written to them asking for me to be referred into hospital ASAP, and I have a follow up appointment with consultant on 16th Jan to discuss next steps. I am a little on the concerned side, however I just have to keep reminding myself that malignancy is rare at my age (45). The waiting is pretty difficult and my issues have dragged on for over 6 months now

dont ever be afraid to ask for something at the docs. Take care x

Thank you so much for your reply whoisjeanie. It sounds like you have had an incredibly stressful time, I am so sorry to hear about all of that. You mention a pelvic examination and I'm also surprised that I haven't had this either. I have seen 3 doctors, including the consultant gynaecologist, and it was only the last doctor I saw that felt my tummy and did a urine sample. No one has done an internal examination of any kind or any blood tests. I think I might go back and ask for this, as the pain has got worse and I don't know if I can wait nearly 3 weeks with the pain and the worrying.  
 

I really hope things get much better for you now that things are clearer and that your surgery goes really smoothly. Thanks again so much for replying.

It has been stressful I admit. I have kept my worries all to myself because my husband lost his mum to ovarian cancer when he was 12 years old. It hit him REALLY hard when I was on a 2 week referral. So I've played down my concerns considerably so as not to worry him.

Hopefully the scan will put your mind at rest. If you are still experiencing symptoms, I found that keeping a diary of them, together with dates of periods, and notes as to how they were, really helped put my case forward. I too, felt like I was wasting the time of the doctors as I've lost count of the number of times I've been, with connected symptoms over the last couple of years x

Hi there, 

I'm 28 and was diagnosed with ovarian cancer in November following removal of a 25 cm dermoid cyst on my ovary which turned out to be malignant. It is a very rare cancer however your post made me want to tell you to keep pushing to get to the bottom of whatever is going on. 
 

It took nearly 3 months from first GP appointment to diagnosis and things happened quite quickly for me. After my ultrasound I was referred to oncology gynaecology but then referrred back to normal gynaecology as they though it was unlikely cancer due to my age. This likely delayed things for me as my cyst grew over 10cm in 2 months and meant I had a csection type surgery and lost my ovary and Fallopian tube because of its size. 
 

If the pain gets bad go to A&E and they'll get to the bottom of it. A girl in the ward beside me after surgery had come in the night before with pain and it was a twisted cyst on her Fallopian tube and ovary. She had emergency surgery and it was all saved and sorted. Don't sit at home in agony.

The likelihood is it's not anything too serious, however don't let your age be something that allows people take your pain or concerns less seriously. If you don't feel listened to push, if you do feel listened to then trust the system. In fairness the NHS is fantastic but those who shout loudest do tend to get heard first.

Wishing you all the best. 

Hi mcamymc 

I'm sorry to hear about your recent diagnosis, it must have been quite a shock for you. I hope you are recovering well from your surgery? 

im very concerned at the rate this dermoid has doubled in size in 6 months. It explains a lot of the symptoms I was having. How di you realise something wasn't right? Did you have symptoms or was it discovered in a routine exam?

 I'm sorry that you've lost your tube/ovary at your age. I'm not as disappointed in losing one of mine and a tube at 45. I just want to get the next surgery booked and done.

currently got post op infection (feels like an abscess behind belly button )

I think you're right, those that shout the loudest get to be heard, hence me dithering along for 6 months and it's still inside growing 

take care and I hope any ongoing treatment is going to plan x

Hi whoisjeanie,

Thanks for your reply. Sorry to hear about the infection- it sounds so sore! Getting over surgery is a big enough ask without getting an infection on top. Hoping you're feeling better soon. 

I'm 8 weeks post surgery now and although I'm feeling better I have just returned to work and I am exhausted (I'm a therapist and work with children). My commute is also over an hour and my body just isn't alright with a full days work after 8 weeks off! 

I may just be getting very fed up waiting for results though! I'm having fertility preservation too hopefully.

I had lots of symptoms by the end- couldn't eat, reflux, bad stomach and pelvic pain, fatigue. But before that I had chronic UTIs, bad tummy, pelvic and abdominal pain -all random stuff that never happened at once but when I look back was definitely there. I also had a lump that I could feel when lying down. I looked 5 months pregnant by the time I had surgery. 

What symptoms have you all had?

I've complete hijacked bumblingbees post- sorry! I hope you get your answers soon! 
x

Thank you so much everyone for encouraging me to push a bit with my gp. I went back today because the pain was really bad and had moved to both sides. I saw a nurse who felt my tummy and said it's very soft so she's not worried, but she also did a urine sample. She said I have a lot of protein and blood in my urine and thinks I have a kidney infection, but I will need to wait till Friday or Monday for my results to know for sure. She said it is possible that that is what is causing me the pain, but that it's important that I still go for my scan.

Hello there

firstly- totally understand how worrying this all is. Similar has happened to me (sorry not trying to hijack your post - I just want to share with you) I’ve had symptoms for 12 years- diagnoses with ‘nothing ‘ after a laparoscopy in 2005, then polycyatic ovary syndrome in 2006, I have adenynosis and endometriosis - all of which can give heavy clotting, lower back pain, pressure, sharp squeezing pain, lots of weeing etc etc. I have fibromyalgia and also caught something called ‘cat scratch fever’ diagnosed at the breast cancer dept of hosp after I had some breast lumps biopsied.(all clear for cancer) 

two years later I had my gall bladder out after they found gall stones wedgeD in the duct while scanning my ovaries! At this point they found fluid around an ovary which they said was prob a burst cyst. A line was drawn under that and the shadows formally seen passed off as nothing. 

A while later following continued upset tummies after my gall bladder op, they did send me to gynae who said I had a strangulated fibroid And wanted me to have a camera which I refused as I was just getting over surgery and didn’t want to be poked about any more. They didn’t push as symptoms had settled and when I had twljes to gyna there seemed no concern from her- it wasn’t very much like we’ll if you like we cld give u a coil for the periods but as they had settled, why start messing about?

 Symptoms seem to have settled although I can still wee a lot(small amounts but v often) and my tummy does from upset to the ‘other way’ weekly. I’m often bloated but it’s become normal

at no point was a Ca125  test suggested. I had full bloods before Christmas’s and was phoned to say levels were high which is when ovarian cancer was suggested.

ive had Christmas trying not to worry and a scan booked for next week.

if it’s cancer, then having read up a little (I’ve avoided google searches as don’t want to get carried away)

My point is that despite very obvious symptoms( I’ve told the doctor every time I’m there that I feel nausea a lot and it’s put down to IBS. 

This is the first time ca125 level has ever been checked so please push for this and maybe an internal scan ( sounds awful but its a small probe thing and I’ve had it a few rimes ) 

good luxk and keep us posted