Hey,

In almost exactly the same boat as you.  Mine was found by accident.  I was admitted to hospital in November with what ended up being sepsis but in the battery of tests they did they found an increased CA125 level and I had terrible abdo pain and irregular and heavy bleeding.  Have also had the bleeding after sex for a while but put that down to irregular cycles caused by the coil.

Since I was discharged I have had repeat CA125 levels to check it wasn't the sepsis affecting it and they were still high at 125.  Had another blood test last week whcih I am waiting for the results of and then ultrasound tomorrow.  Like you I am looking at the list of symptoms and knowing I have them all and expecting the worst.  

I would love to be having a colposcopy but they haven't mentioned that at this stage.  I just know something is wrong and ultrasounds seem so inconclusive I just want them to have a good look.  

Like you I have been referred to the gynae unit at my local hospital and just in the waiting game.  I think this waiting is worse than the knowing - do you agree?  At least when you know you can make a plan and actually do something.  This is a horrid limbo.  

Hope you hear soon.  Let me know.  xx

Hi

thanks for replying to me. It's strangely comforting to o ow I'm not alone on this. 
Can I ask what your ca125 levels were when you had sepsis? Have they came down at all? 
I was at the end of my weird, long bleed when they did my blood test, so I'm hoping that caused my raised levels as I've heard it can be higher when you're on your period. But I know I'm probably clutching at straws a bit. 
 

my GP referred me for colposcopy because apparently it's routine if you're over 35 and have had bleeding after sex for more than 4 weeks. 
I *think* if it had just been my long period, he may have just advised to monitor it. Well, until my raised ca125 came back anyway. 
I don't know your age, but if you're over 35 you should be being referred for colposcopy if this has went on longer than 4 weeks? 
 

Good luck with your scan! Your symptoms could easily be endometriosis which can cause raised ca125 too! 
 

Let me know how it goes!!

Thanks for the info on the 35+ thing. I had no idea.  I do hate that different hospitals and consultants seem to have different ways of working.  I am 44 so definitely need one and will push for it in my next chat with someone. 

One thing I didn't mention was that I had an ultrasound and CT while in hospital and they did see something on my ovary but said it was small and could be as a result of ovulating - the scan tomorrow is to compare to that.  I would like to have the colposcopy though as I just know something isn't right and they ruled out endometriosis on those other scans.  

I don't have any note of my in hospital CA125 level and I asked the GP when I had my bloods taken again last week and she said she didn't have it on file. 

Hopefully this two week wait will go quickly and you will soon hear from them or have an appt.  Don't be afraid to chase.  I have only told a few people and probably only because it was linked to me being in hospital but they have all said to keep on the doctor and consultants back.  To get the name and number of the consultants PA and to use them as a way of keeping in the loop and chasing.  

Fingers crossed that this time next month we will both have good news and this will be soon forgotten.  

Thanks for the info on the 35+ thing. I had no idea.  I do hate that different hospitals and consultants seem to have different ways of working.  I am 44 so definitely need one and will push for it in my next chat with someone. 

One thing I didn't mention was that I had an ultrasound and CT while in hospital and they did see something on my ovary but said it was small and could be as a result of ovulating - the scan tomorrow is to compare to that.  I would like to have the colposcopy though as I just know something isn't right and they ruled out endometriosis on those other scans.  

I don't have any note of my in hospital CA125 level and I asked the GP when I had my bloods taken again last week and she said she didn't have it on file. 

Hopefully this two week wait will go quickly and you will soon hear from them or have an appt.  Don't be afraid to chase.  I have only told a few people and probably only because it was linked to me being in hospital but they have all said to keep on the doctor and consultants back.  To get the name and number of the consultants PA and to use them as a way of keeping in the loop and chasing.  

Fingers crossed that this time next month we will both have good news and this will be soon forgotten.