Another year to wait

Hi Eliz,

Sorry to read your story and that you find yourself here. My daughter had a similar experience when she was in her 20's. She started with a pain on her right side and nobody would listen to her. She began to not be able to wee, and after breaking down at the doctors after several months was sent for investigations. Turned out she had an ovarian cyst the size of an orange, which they removed. She has been fine since and gave birth with one ovary!!!

I think I would contact the doctor again, and stress how uncomfortable you are. See if he can bring things forward. Otherwise, could you afford to get a consultation privately? I did that once when a doctor said I wasn't pregnant, when in fact, I was.. (no water tests in those days!!!!) I thought I was going insane at the time.  xxx

Hi NannyAnny,

Thanks for your response. Your experience doesn’t sound great. It’s the not knowing that’s the stressful part, Combined with lack of confidence in the system after last time and then being told this time that I’d been given incorrect information on my TV scan. 
I was thinking of finding out how much it costs for a private gynae consultation. I think I’ll see what the next scan shows at the end of next month - if the tumour has grown - and take it from there. On the plus side, I had a CA125 blood test done (took two weeks to get the results) and that was normal, which rules out ovarian cancer. But there’s no equivalent test for womb/uterine cancer. Endless frustration at the moment. 

Hi Eliz and welcome to our group.

I'm finding it hard to believe that they are factoring your age into it! If you have a tumour in your womb they can't expect you to wait 5 years or so until it's removed. They also seem to be ignoring both your previous medical history and your family history.

If I was you I wouldn't sit back and wait. I'd be on the phone on pretty much a daily basis to pester them. 

It might be an idea if you have a chat with the nurses on the Macmillan Support helpline, freephone no. 0808 808 00 00. They should be able to advise what you should do.

Sending welcoming hugs, Barb xx

Hello Eliz. Is there a NHS Walk-In centre that you can go to?  I had womb cancer a few years ago (I am ok again now) and on the day that I had an emergency, a big bleed, I was not able to get an emergency appointment with my GP. I went to a NHS Walk-In centre and was seen by a doctor there, who questioned me very carefully and in a lot of detail, then put pressure on my GP to see me immediately. The GP then saw me that same day and referred me to hospital. Perhaps this is a way that you can get seen quickly, and taken seriously, without having to resort to going to A&E. Good luck and I hope you get to see a specialist soon. LR.

That might be a good idea. I have contemplated taking pillow, blanket plus a supply of sandwiches and staging a sit in at A&E. But I could be making a fuss about nothing!

Thanks MrsBJH. GP says hospital referrals are out of their hands. The other suggestion of going to an NHS urgent care walk-in centre sounds like the it might be the best option. It’s that or A&E at this point. I’ll try the Macmillan support line. Thanks for the tip. E x

Hi @Eliz. I didn't have a great time and a lot of to-ing and fro-ing to get my diagnosis unfortunately and was failed by many GPs so I can sympathise. I was always just offered medication. But I kept on going back, changed GP and finally got one that took me seriously. The urgent gynaecological referral being for over 50s is nonsense. I am 42 and I was put on the "two-week wait" referral which I thought was a protocol that had to be honoured. If I was you, I'd go back to basics and change GP which would be a quick way to get a second opinion. 

Hi Cakenport, you do sound like you had to fight hard. Urrrggh. It shouldn’t be that hard. I haven’t seen the same GP twice since this started in 2019. I’m rural based and the only other GP surgery nearby is in partnership with mine, so probably not much of an option on that one. But I do think I need to push the system harder as it’s definitely failing me at the moment, and not for the first time.

Just a thought you could contact the scanning dept and inform them you are available and could take a last minute cancellation  

This is what I would do .

You could say the psin getting worse x