Hi Indi,

I just came on here because I'm sat at home worrying. I haven't got any answers for you but wanted to share my experience. 
I'm 43 just had my smear high HPV, cancer cytology inadequate. I have to wait 3 months for the next smear. My GP told me she's going to refer me for ultrasound and possibly other tests. 

Previously I was told I had a cyst had an mri and no really info given asked if i had endometriosis sonography similar reaction to yours. I've had similar symptoms to you re periods the last few months. 

I'm thinking of paying for private tests to try and get some answers sooner. The thought of waiting for an extra up to 12 weeks. It's giving me a headache. 
I think if you ring the GP and push for an appointment you should get the results sooner. 3 weeks is a long time to wait.

Take care. 
 

Hi Shanni

Thanks for your reply. The waiting is the most horrendous part. Its been awful from the start tbh from the point the referral was made. The initial Dr was great, ordering bloods and doing referral etc, but the day after I had blood tests another gp recieved my results directly from the path lab (I guess because they were abnormal) and the Dr sent me a text saying 'all your results are satisfactory apart from one which is raised so I have done a 2ww referral for you'. 

The initial GP I saw had already processed a 2ww referral so this was confusing and I had no idea at this stage what blood result was raised, I phoned the surgery several times over a course of a week to obtain the result as they had not recieved them, the raised one was phoned through to the Gp and she had not put them on my notes. Eventually the reception was able to confirm it was the CA125. 

I then waited 9 days to recieve the 2ww app for USS then contacted hospital as I had not heard anything, they said it can take a few months to recieve an app for an USS. I pointed out to them that it was a 2ww and armed with the high CA125 I could not understand the delay they then put me on hold apologised that I had been put on the non urgent patient list by mistake and offered an app for 4 weeks after original referral date being the earliest they could offer. 

And now following the USS another 3 weeks wait to see GP to discuss findings. Honestly the mental health side of the waiting is unbearable, I do understand the strain on the NHS but I do believe things can be handled better and communication is a key element that seems to be missing.

Do you know if your Gp has processed your referral yet?

Hi Indi,

so you're next appt is still 3 weeks away. I've chased up my ultrasound today and they said within the next week. 
I also had to chase the result from the previous MRI myself as there was no info on the GP system maybe because I changed GP or it was never sent who knows. I then had to ring the GP with the information to get them to contact MRI to tell me the results. Then the receptionist who last week told me she couldn't chase my smear results said oh could email them for you. I beyond it all at this point. 
 

So I'm still awaiting ultrasound and previous results, before any further referrals are made.  I have to have a further smear in June. 
I may have nothing to worry about but it's just the way I've been feeling exhausted all the time and nauseous. 
I did a pregnancy test today, it was negative and that's made me feel more sick. Will keep you posted on my next steps. 

Are you any further forward been given any more information regarding your results/test? 

I hope you've been feeling okay and managing to stay positive or at the least not think about it too much. Xx

Hi Shanni

Sounds like your having to do a lot of the leg work yourself just to get anywhere with results or referrals. I think unfortunately this is a similar pattern for a lot of people in similar situations.

The waiting for gp appointment follow up to discuss results became almost intolerable, I was sending myself nuts analysing the USS results so much it was consuming my life. I phoned my surgery and begged for an appointment sooner than the one I had and I managed to get seen a week ago.

The Dr had recieved my results from the hospital USS but they had not been signed off by the GP that checks all results, it's a tiny surgery practice with 1 part time GP and 1 retired GP that helps out as a locum, that's all there is so I'm sure you can imagine it's all very slow. 

Anyway I saw the GP he went through results with me, he explained that he is doing another 2ww but to gynae and that I'm probably looking at a hysterectomy! My CA125 is now 141, but I'm not convinced it's for reasons of cancer, I'd like to think it's some other benign cause.

I asked my GP about endometriosis and about being referred to an endo specialist but his response was more urgent on getting me seen in gynae as quick as possible and that he's more concerned about my uterus and ovary,  whatever that's supposed to mean. What really worries me here is if they decide to remove everything via hysterectomy, it won't solve the endometriosis and I will likely need more surgery further down the line so I think I have a bit of a battle with Gp/gynae to get the correct specialist to do the correct procedure to put my body back on the correct track.

I have had a lot to research, absorb and come to terms with and half of it I don't even know yet I'm just speculating like if it is cancer or stage 4 endo affecting other organs like my bowels or bladder, the whole few weeks has really opened up a huge can of worms of problems I may have to face and I have been struggling.

I have my initial gynae app in 7 days time, I will keep you posted with what they plan and next steps. 

Hope things start moving in the right direction for you soon and you start getting some answers. It's difficult to not let it consume your life, all the thoughts and chasing but take some time out to try and reflect on something more positive. I haven't long moved house so I have had painting walls etc to distract me.

Keep me posted on progress x