My story

[Stormtrooper4]

Hi All. Just wanted to put my story out there. I had a routine MRI scan a few weeks ago as I have bulging discs in my back and to my surprise 3 days later my GP called to say that my scan had picked up 'a large mass on my left ovary'. This literally shook me as it was completely out of the blue. The next thing I am booked in for a CA125 test the next day and then an appointment for a TV ultrasound the same week. My CA125 came back slightly raised, so again panic. I went for my TV ultrasound and the sonographer said that I had what looked like an Endometrioma. I then had a follow up appointment with a Gynae Consultant who agreed with the sonographer and then also examined me. This all happened with 2 weeks. My head was absolutely spinning at this point. The Consultant was amazed that I had had no symptoms whatsoever. No bloating, no pain, no bleeding between periods, nothing. We came up with a plan that I could have surgery to remove the left ovary and fallopian tube which I am absolutely fine with, I just want this thing out of my body. I had a CT scan on Thursday and await the results of that but the Consultant said he would have another appointment in a few weeks to get the ball rolling on the surgery. I know in many ways the NHS are failing but I really cannot fault the speed at which I am being looked after.

[Pastablue]

wow that is fast! Wish that was the case around by me, 2 endometriomas and a CA level of 252 and they couldn’t care less! It’s been months and I’m still on a waitlist for an initial appointment with a specialist (13 week wait), told the surgery waitlist is around 18 months

[Stormtrooper4 in reply to Pastablue]

Wow that is crazy! Some of these Doctors just don't seem to get that people are going out of their minds with worry. If I were you I would be making calls weekly. Ask to be put on a cancellation list (if you haven't already). Where are you based if you don't mind me asking? I'm under University Hospital Coventry & Warwickshire.

[Pastablue in reply to Stormtrooper4]

I’m under Wolverhampton so not a million miles away, sadly done all that but just gave up because I was getting nowhere and getting more stressed. To be honest now I’ve put it at the back of my mind my symptoms have got a lot better. Glad you were taken seriously though! Sounds like a good hospital x

[I-dunno in reply to Pastablue]

Hi there

Hope you get this message I’m new to this. I think it’s shocking that your CA125 levels are raised and they are not fast tracking you is shocking as they have to do it within 2 weeks for you.

Also are your endos quite big in size? Or are they under 5cm?

I totally agree with you fighting to be heard just adds to the stress so you are not on your own. Sometimes when u stop fighting things happen but I would say if you can one last time just state the policy for raised CA125 to the head of the department or even your gp.

And leave it. Until u can muster up the strength to go at it again. I’m sure it must be going to the wrong person.

Check gynaecology route for your area so they are following the right direction.

I have 10cm endometrioma

Had some trouble with some gynaecologists men. Kind of gave up fighting. Didn’t take too long. I met a lady (didn’t know she was a surgeon) it was supposed to be my initial consultation but after explaining to her where I’m at and what I been going through in my personal life she just said she doing my surgery. Saw her Monday last had my pre-op should be done in the next couple weeks.

So sometimes it’s just who’s listening…..

[Pastablue in reply to I-dunno]

My initial appointments were fast tracked, for the initial consultation and an MRI but they then decided to just refer me to the endo specialist which is the 13 week wait for the initial consultation.

Mine are 5cm and 3cm on the one ovary so fairly big. I gave up, did go back to my GP and he just said lots of people live with endometriomas so what’s your problem basically. I did have my CA125 levels taken again 6 weeks after the first ones and they were lower (still abnormal) but again nobody went through the results with me at any point… just rang up to get the results.

It’s been 12 years since I first went to the doctors about this would you believe lol, probably seen over 20 doctors and consultants and all of them have been awful, hoping I find someone who listens like you have found soon x