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.  

Can you find out the name of the consultant and see if you can chase.  4 weeks is too long to wait.  

I have probably waited longer than I should have but I have put that down to Christmas break and spending some time getting the sepsis markers down.  

I'm asssuming the longer wait time must be due to covid pressures on the NHS. I can see on my NHS app that the GP requested a 2ww. 

[@shanklygates77]‍ how'd it go today? :happy:

Hey - could not log in to this to reply before now.  A bit nothing really - the sonographer said he couldn't see anything major - said there was some fluid but that he would need to pass on results to the consultant.  No clearer.  Haven't heard from them and I have called her PA yesterday and today and left voicemails.  Back in limbo but glad there isn't a canatalope sized tumour.  A load of things I have read have said that ultrasound is not reliable and so the initial relief didn't last ages.  

How about you?  Still waiting?

x

Hi

I guess no news is good news in this journey ey! I'd certainly be feeling very relieved if I was you! 
Did they mention doing a colposcopy cos of the bleeding after sex? I think that is my biggest worry right now! 
 

Still a long wait ahead for me unfortunately as my appointment is still ten days away. I feel as if I've accepted the inevitable now. I've been looking at cremation plans and planning out voice recordings to leave for my kids. Sometimes I feel at peace with it, and other times I'm an absolute mess. I swear this waiting is messing me up completely

I can't believe you still have so long to wait.  Hope it goes quickly. The waiting is definitely torture.  I can't help but think that at least once you know you can work with it and make plans and fight it.  You can't do anything while you don't know anything.  Feel for you.  

I got a call today to ask me to go in for a face to face appoitment with the consultant.  It is next week.  I did ask what this meeting was for and didn't get much info.  Is this the meeting where they give you the bad news?  Wondering if I should take my husband but also not sure restrictions (and school pick up time) would allow anyway. 

Can't help wondering why they would want a face to face meeting?